What do all of these chronic diseases have in common?
- Alzheimer’s, dementia, cognitive decline, and memory loss (collectively referred to as “aging”)
- Multiple sclerosis (MS) and other neurological disorders
- Mental illnesses like depression, anxiety, bipolar disorder, and psychosis
- Cardiovascular disease
- Learning or developmental disorders in kids
- Autism spectrum disorder
- Autoimmune disease and immune dysregulation
- Cancer
- Male and female infertility
Answer: They can all mimic the signs and symptoms of a vitamin B12 deficiency.
An Invisible Epidemic
B12 deficiency isn’t a bizarre, mysterious disease. It’s written about in every medical textbook, and its causes and effects are well-established in the scientific literature.
However, the condition is far more common than most healthcare practitioners and the general public realize. Data from a Tufts University study suggests that 40 percent of people between the ages of 26 and 83 have plasma B12 levels in the low normal range—a range at which many experience neurological symptoms. Nine percent had an outright deficiency, and 16 percent exhibited “near deficiency.” Most surprising to the researchers was the fact that low B12 levels were as common in younger people as they were in the elderly. (1)
That said, this type of deficiency has been estimated to affect about 40 percent of people over 60 years of age. It’s entirely possible that at least some of the symptoms we attribute to “normal” aging—such as memory loss, cognitive decline, and decreased mobility—are at least in part caused by a deficiency.
Why Is It Underdiagnosed?
B12 deficiency is significantly underdiagnosed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many deficient people have so-called “normal” levels of B12.
Yet, it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL—levels considered “normal” in the U.S.—have clear vitamin deficiency symptoms. (2) Experts who specialize in the diagnosis and treatment of a deficiency, like Sally Pacholok, R.N., and Jeffrey Stuart, D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. (3) They also recommend treating patients who show normal B12 levels but also have elevated urinary methylmalonic acid (MMA), homocysteine, or holotranscobalamin, which are other markers of a deficiency in vitamin B12.
B12 deficiency can mimic the signs of Alzheimer’s, dementia, multiple sclerosis, and several mental illnesses. Find out what this vitamin does and learn how to treat a deficiency.
In Japan and Europe, the lower limit for B12 is between 500 and 550 pg/mL. Those levels are associated with psychological and behavioral symptoms, such as:
- Cognitive decline
- Dementia
- Memory loss (4)
Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.
What Is Vitamin B12 and Why Do You Need It?
Vitamin B12 works together with folate in the synthesis of DNA and red blood cells. It’s also involved in the production of the myelin sheath around the nerves and the conduction of nerve impulses. You can think of the brain and the nervous system as a big tangle of wires. Myelin is the insulation that protects those wires and helps them to conduct messages.
Severe B12 deficiency in conditions like pernicious anemia (an autoimmune condition where the body destroys intrinsic factor, a protein necessary for the absorption of the vitamin) used to be fatal until scientists figured out death could be prevented by feeding patients raw liver, which contains high amounts of B12. But anemia is the final stage of a deficiency. Long before anemia sets in, deficient patients will experience several other problems, including fatigue, lethargy, weakness, memory loss, and neurological and psychiatric problems.
The Stages of a Deficiency
B12 deficiency occurs in four stages, beginning with declining blood levels of the vitamin (stage I), progressing to low cellular concentrations of the vitamin (stage II), an increased blood level of homocysteine and a decreased rate of DNA synthesis (stage III), and finally, macrocytic anemia (stage IV). (5)
Common B12 Deficiency Symptoms
The signs can look like the symptoms of several other serious disorders, and the neurological effects of low B12 can be especially troubling.
Here are some of the most common vitamin B12 deficiency symptoms:
- Tingling or numbness in the hands and feet
- Brain fog, confusion, and memory problems
- Depression
- Premature aging
- Cognitive decline
- Anemia
- Weakness
- Fatigue
- Reduced appetite and weight loss
- Constipation
- Trouble balancing (6)
Children can also show symptoms, including developmental issues and learning disabilities, if their B12 levels are too low.
Why Is It So Common?
The absorption of B12 is complex and involves several steps—any of which can go wrong. Any of the following can cause B12 malabsorption:
- Intestinal dysbiosis
- Leaky gut and gut inflammation
- Atrophic gastritis or hypochlorhydria, or low stomach acid
- Pernicious anemia
- Medications, especially proton pump inhibitors (PPIs) and other acid-suppressing drugs
- Alcohol
- Exposure to nitrous oxide, during either surgery or recreational use
This explains why a deficiency can occur even in people eating large amounts of B12-containing animal products. In fact, many of my patients that are B12 deficient are following a Paleo diet where they eat meat two or three times daily.
Who Is at Risk for a Deficiency?
In general, the following groups are at greatest risk for a deficiency:
- Vegetarians and vegans
- People aged 60 or over
- People who regularly use PPIs or acid-suppressing drugs
- People on diabetes drugs like metformin
- People with Crohn’s disease, ulcerative colitis, celiac, or IBS
- Women with a history of infertility and miscarriage
Note to Vegetarians and Vegans: B12 Is Found Only in Animal Products
You cannot get B12 from plant-based sources. This vitamin is only found in animal products. That’s why vegetarians and vegans need to know the signs of deficiency—and the steps necessary to fix the problem.
B12 is the only vitamin that contains a trace element (cobalt), which is why it’s called cobalamin. Cobalamin is produced in the gut of animals. It’s the only vitamin we can’t obtain from plants or sunlight. Plants don’t need B12, so they don’t store it.
A common myth among vegetarians and vegans is that it’s possible to get B12 from plant sources like:
- Seaweed
- Fermented soy
- Spirulina
- Brewers yeast
However, plant foods said to contain B12 actually contain B12 analogs called cobamides that block the intake of and increase the need for true B12. (7) That explains why studies consistently demonstrate that up to 50 percent of long-term vegetarians and 80 percent of vegans are deficient in B12. (8, 9)
The Impact of a Deficiency on Children
The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age six on a vegan diet are still B12 deficient even years after they start eating at least some animal products. In one study, the researchers found an association between a child’s B12 status and their performance on testing measuring:
- Spatial ability
- Fluid intelligence
- Short-term memory
Researchers found that formerly vegan children scored lower than their omnivorous counterparts in each area. (10)
The deficit in fluid intelligence is particularly troubling, the researchers said, because this area impacts a child’s ability to reason, work through complex problems, learn, and engage in abstract thinking. Defects in any of these areas could have long-term consequences for kids.
I recognize that there are many reasons why people choose to eat the way they do, and I respect people’s right to make their own choices. I also know that, like all parents, vegetarians and vegans want the best for their children. This is why it’s absolutely crucial for those that abstain from animal products to understand that there are no plant sources of B12 and that all vegans and most vegetarians should supplement with B12.
This is especially important for vegetarian or vegan children or pregnant women, whose need for B12 is even greater. If you’re not willing to take a dietary supplement, it may be time to think twice about your vegetarian or vegan diet.
How to Treat a Deficiency
One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment are relatively easy and cheap—especially when compared to the treatment patients will need if they’re in a late stage of deficiency. A B12 test can be performed by any laboratory, and it should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com.
As always, adequate treatment depends on the underlying mechanism causing the problem. People with pernicious anemia or inflammatory gut disorders like Crohn’s disease are likely to have impaired absorption for their entire lives and will likely require B12 injections indefinitely. This may also be true for those with a severe deficiency that’s causing neurological symptoms.
Some recent studies have suggested that high-dose oral or nasal administration may be as effective as injections for those with B12 malabsorption problems. (11) However, most B12 experts still recommend injections for people with pernicious anemia and an advanced deficiency involving neurological symptoms.
Try Supplementing
Cyanocobalamin is the most frequently used form of B12 supplementation in the U.S. But recent evidence suggests that hydroxocobalamin (frequently used in Europe) is superior to cyanocobalamin, and methylcobalamin may be superior to both—especially for neurological disease.
Japanese studies indicate that methylcobalamin is even more effective in treating neurological symptoms and that it may be better absorbed because it bypasses several potential problems in the B12 absorption cycle. (12, 13) On top of that, methylcobalamin provides the body with methyl groups that play a role in various biological processes important to overall health.
Change Your Diet
Nourishing your body through whole food is the best way to get the vitamins and nutrients you need. If you’re low on B12, try eating some vitamin-rich foods like:
- Liver
- Shellfish
- Clams
- Oysters
- Organ Meats
Eating other kinds of seafood, like octopus, fish eggs, lobster, and crab, can also help you attain normal B12 levels. If you’re seafood-averse, you can also get this vitamin from:
- Lamb
- Beef
- Eggs
- Cheese
It’s important to note, though, that the amount of B12 in these foods is nowhere near as high as the levels in shellfish and organ meats.
What to Do if You’re Experiencing Vitamin B12 Deficiency Symptoms
If you suspect you have a deficiency, the first step is to get tested. You need an accurate baseline to work from.
If you are B12 deficient, the next step is to identify the mechanism causing the deficiency. You’ll probably need help from a medical practitioner for this part. Once the mechanism is identified, the appropriate form (injection, oral, sublingual, or nasal) of supplementation, the dose, and the length of treatment can be selected.
So, next time you or someone you know is “having a senior moment,” remember: It might not be “just aging.” It could be B12 deficiency.
Now, I’d like you to share your experience. Have you experienced any of the symptoms associated with low B12? How do you make sure you get enough of this vitamin to stay healthy? Tell me in the comments below.
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AnnF says
I’m wondering if some of the people here who still have really low levels of B12 despite injections, etc. might not have liver problems. Maybe too, some kind of cancer? Cancer can cause all kinds of weird symptoms even when it’s still small. I don’t know how you can test for it, though, if you don’t know what type you are looking for. You can have tests for liver function done, though, along with a sonogram. You might want to have your kidneys checked while you are at it.
Marpy says
I had B12 and D deficiency but after some time on supliments, my blood work is normal with the exception of a low reading of 11 for Gamma Glutamyl Transferase ( range is 14 – 62 U/L) . My Glomerular Filtration rate was 79 (An eGFR from 60 – 89 ml/min/1.73 m2 is consistent with mildly decreasing kidney function) . I could never find anything out about the low Gamma Glutamyl Transferase and all my doctors tells me is that low is better than high without providing any details.
Eric Richards says
My my what a big long thread of comments
Hello Chris
At the top of the page you forgot to mention *Cholesterol (&or Statin provoked medical conditions).
A few years ago I am thinking “I am doing everything right but can not get my cholesterol test right”
The best I could get out of the cholesterol group was the triglyceride down to almost half 1.1 mmol/L where the pass is <2 by saying a absolutely NO to any food I thought had “toxic” sugar in it.
The breakthrough came when I was reading “Your Blood Never Lies” it was suggested by the author James LaValle RPh, CCN to look at Homocysteine. So next time I had a cholesterol test I added it in as a extra private test. After the results came I made a visit to my naturopath (who in fact teaches doctors how to read blood test) the Homocysteine was over the limit at 19.8 when the limit was 5-15umol/L.
It was suggested next time I get a blood test to go for a vitamin B-12 test, I wish now I had of gone back just to test B-12 because 3 months later the Homocysteine had gone worse from 19.8 to 22.1 umol/L and Vitamin-B12 was 161 pmol/L the high end of the borderline 110-170 the pass is 170-600 pmol/L. But despite that the over all cholesterol had dropped a bit better and closer to the border line fail apart from the HDL cholesterol, so I think my diet & lifestyle must be right for good cholesterol apart from the B-12 deficiencies.
My naturopath added it is the B12 deficiencies that makes the homocysteine to go up, then that in turn makes your cholesterol go up, and added high homocysteine does far more damage than high cholesterol. I wish I could pass this information onto James LaValle as it is missing from his book and could be worthwhile added in to his next edition, if it turns out my naturopath is correct, the next cholesterol test is lookinggood. On page 208 there is a list of food for Iron, Folate & Vitamin-B12, as I have a high end pass for iron I can see some foods on the list I have in my diet, the same for folate (I get a mid range pass) but can not see many foods I get out for the B12 apart from the odd smoked salmon I get from time to time. Interesting enough in the book it says for high than normal calcium could be “Control your homocysteine ……” & you guessed I have high end normal for calcium on a OligoScan mineral hand scan use internet to learn more on OligoScan reports.
luba says
Hi, i’m 32 years old and already 6 years suffering from depression. i’m getting treat by antidepressant drugs “ssri” everyday and b12 injection one a month.
every half a year my b12 decreased to 180 and i’m feeling extreme depression. so, usually i’m doing series of injection (about 6 at 2 weeks) and i’m feeling excellent, and so forth.
month ago i did the same series of injections and felt better. but this time only after a month its came back: sadness, depression, no energy. i did blood test and its shows 180 again . how could it be after a series of 6 injection month ago.
something got wrong, what/how its could be? my blood not absorbing b12? or maybe ther are any influence/ correlation between the antidepressant to b12? im feeling very bad, what can i do?
i would appreciate any kind of advise and treatment.
thank you 🙂
Diane says
Luba, what form was being injected? I read that the most common type used for injecting was cyanobalamin, the least useful type to our bodies. Maybe you’re not converting it to the active form.
I’ve just been reading a ton of useful information here:
http://www.b12-vitamin.com/
joel says
what type of test will show me my TRUE/REAL b12 status…
there are many tests recommended like total B12, active B12, homocysteine, serum folate, RBC folate etc…?
Judy says
Eleven years ago I found out I have a severe B12 defiency. My level was 41. I’ve been using the B12 oils (methylcibalamin) you can order online for years now. My level has been very good. But my symptoms really haven’t gotten better. My gait is still bad, short-term memory problems, weak very stiff muscles and more. My doctor doesn’t really know what else to do. I use a cane for short distances and a rollater for long distance. I’ve learned to live with this but it does get me down a lot.
Kate Wader says
Hi, Judy – perhaps you try and read about the Wahl’s Protocol, you can find an article even here, in the section Immunity & Autoimmune Disease. It looks from your description like you may benefit from her diet, even if you are not diagnosed with any of autoimmune problems. Her diet increases energy levels providing all essential nutrients needed to produce more energy on a cellular level. She has her website and there are books / ebooks on Amazon as well if you are interested to become familiar with her works.
Judy says
Hi Kate
Thanks for your reply. I’ll look into her books. Seems very interesting material. Thanks again!☺
instagram online says
Thank you for sharing the post. Another reason for me not to go vegan. I think I will eat vegan once a week. B12 deficiency is not something we can cure with Vitamin B12 pills.
Terri Rossi Owen says
I went to the doctor for really bad signs of demetia or alzhiemers, muscle wasting, weakness,depression,hand and head tremors and back pain. They sent me to mental health and the did blood work. I was sent to a neurologist and she did tests and prescribed me B12 1000 mcg. My level is 350. She never told me I was B12 deficient or anything. I am also taking vitamin D3 5000 once a week. I was doing really good and I didn’t take any B12 for about 8 days and everything came back like everything !! I started my pills again and ordered the methyl type online. I’ve been in the dark all this time. Thank God for articles like this. I super depressed right now. They are starting neurological behavior testing.
Tracy Rowe says
they should do an Intrinsic Factor Antibody test as well. It’s only accurate about 60% of the time, but request it anyway. Also, it might be a good idea to read this http://www.bloodjournal.org/content/129/19/2603?sso-checked=true
Henry says
Instead of doing this outside the box testing why not just supplement along with increasing meats (i.e. B12 rich foods) if symptoms are present.
The B12 lozenges are super cheap. it can’t hurt even if you don’t need it. End of discussion.
Jeanmarie Todd says
“vitamin D3 5000 once a week” This is way, way low. Recently revised recommended daily levels are for 8,000 iu a day of D3. Take with preformed Vitamin A as well, to keep them in balance, or simply eat a lot of liver or other organ meats.
Marpy says
I was found to be B12 deficient with many of the symptoms discussed on this form. I was also found to be vitamin D deficient. Not sure if the 2 are some how related. I started taking over the counter b12 suplements and a lot of the symptoms got considerably better but not all. When I finally started taking vitamin D suplements, that is when the symptoms finally disapeared. Testing for Vitamin D is expensive and so a lot of doctors do not want to do it and in Canada some government plans do not cover the testing unless you have a defficiency. Not that my doctor put me on 1000 per day which proved to not be enouogh and I am now on 3000 per day which is proving to be adequate in my case. The specialist sent me for the initial D testing ( it was covered if a specialist sent you but not if a GP sent you) and now that I have been shown deficient, I am covered regardless of who sends me.
Good Luck
Marpy says
Note – I was also taking magnesium and I am no longer taking Magnesium as my levels are fine – A lot of the food I eat is high in magnesium and that seems to be adequate to maintain my levels.
Marpy says
B12 and magnesium . Long story short – last summer, I was having issues such as tingling arms and tingling legs, off balance and head pressure. blood tests showed that my B12 was low (77) and so I went on over the counter B12 (1200mcg) . This over a period of months cleared up all the symptoms . In mid February of this year, my blood tests showed a high B12 level (703 – range is from 138 – 652) . Everything else showed within limits . When i went to a neurologist (mid April) , he told me to start taking Magnesium (250 mg per day) he ordered additional blood work which showed a b12 level of 546 (I had backed off on the b12 supplements due to high reading), a low vitamin D level of 47 (75 – 250) is the range, a low reading of 11 for Gamma Glutamyl Transferase ( range is 14 – 62 U/L) . My Glomerular Filtration rate was 79 (An eGFR from 60 – 89 ml/min/1.73 m2 is consistent with mildly decreasing kidney function) .
Everything else tested was in range .
The last blood test taken in early may (ordered by my family doctor showed a b12 reading of 676 (Hi), a magnesium level of 0.98 (range is 0.7 – 1.0 mmol/L) and confirmed the other readings from the previous blood work.
In early May I stared taking a vitamin D supplement (1000 IU 25mcg) as well as the B12, Complex B100, a one a day vitamin and 250 mg Magnesium I was already taking.
shortly after starting to take the magnesium Symptoms (tingling in arms and legs and head , off balance feeling, pleasure in ears and head) came back.
Has anyone had any issues, similar issues as a result of to much/ hi b12 / magnesium or a combination of? Also, I could find little on what Low Gamma Glutamyl Transferase means as most problems are related to high readings and so any insight on that or anything else I have written above would be appreciated.
Thanks Marpy
Marpy says
note that after the last blood test showing high b12, I continued taking my B12 as the doctor did not say to stop and as such, my level could have gone considerably higher. I stopped taking the B12 yesterday after reading that to much could cause side effects – some similar to what I am experiencing. My B100 Complex contain 100 mcg of B12 which I figure should with my change in diet to eat more foods fortified with and containing B12 maintain a healthy level for me.
Molly says
Could you be low in another important electrolyte? Just from something I read, in case it helps:
“Using B12 can cause muscle spasms because there isn’t enough potassium in your body to keep up with your blood cells need for potassium when they begin to divide properly again after a period of low vitamin B12.”
http://www.health-boundaries.com/home/know-your-nerve-cells/
Marpy says
Thanks for the reply – My potassium level was 4.7 (acceptable range 3.5 – 5.2) and so was ok.
Tracy Rowe says
It isn’t possible to have B12 levels that are too high. B12 overdose is impossible, as the vitamin is water soluble, and any excess is excreted-this has been proven in studies where patients were given extremely high doses of b12 over a period of time with absolutely no ill effects. Of the B vitamins, only B6 is toxic in high doses.
It should be noted that a high reading of serum B12 does not mean you’re “cured”. If you are still having deficiency symptoms, you still have a deficiency. The only way to know how much b12 in your blood is actually being used by your body is an Active B12 test, which are hard to get and usually expensive.
If you’re supplementing with B12, you need to supplement with Magnesium and Folate or Folic Acid (whichever works better for you) as B12 methylization requires Folate and depletes magnesium, as well as potassium, which should be supplemented by high potassium foods only if your levels are low. Too much potassium is dangerous and can cause heart issues and stroke. You should have your ferritin (blood iron stores levels) tested, as people with b12 def often have low iron as well.
Marpy says
Hi Tracy – Thanks for the reply. My Magnesium and potassium levels were checked and were on the high side of acceptable limits. My B6 was not checked. What I am taking B6 wise is a multivitamin (2.5 mg) and B100 complex (100 mg) . My understanding based on an internet check is that the maximum recommended daily intake for B6 is 100 mg and the daily recommended intake is less than 2 mg. As such between diet and supplements, I am somewhat over the maximum daily and way over the recommended daily . As such I will stop taking the B100 complex. This is considering that my levels for everything vitamin wise checked during my last blood test was good with the exception of Vitamin D. I will stay on the vitamin D and the one a day vitamin and see what that does.
Thanks for the information – Marpy
Marpy says
I have be off the B100 complex (which contains 100 mg of B6) for 3 days now and my symptoms have improved considerably. I was wandering if anyone has any idea of how long it takes for the B6 in a persons system to get down to normal levels? The tingling feeling in arms and legs is much better but still experiencing off balance ringing ears and light headednes although not as bad. Thank you
Tracy Rowe says
usually the protocol with b6 is 4 months on 2 months off. I would have your b6 levels checked. If you feel you need to supplement other b vitamins, find a b that contains no b6
Marpy says
Thanks Tracy. I was only on the B100 and magnesium for 3 weeks and began feeling the symptoms (off balance, tingly arms and legs, shaky feeling, ear pressure) within days of starting to take them. These symptoms seemed to be slowly improving even while I was taking the Magnesium and B6 but really got much better within days of when I stopped taking magnesium and B6. I have for 15 years or more some twitching in my right eye lid and left cheek that comes ant goes as well. This as well got worse and then got better when I went off the B6 and Magnesium. I was wandering if B6 in the amount I was taking over a short period of time can cause this ?
Next time I am in to see the doctor, I will ask for a B6 test as it has never been tested for in the blood tests that they sent me for to date.
Thanks Marpy
Tracy Rowe says
If you’re on Facebook, you should join the Pernicious Anemia-B12 Deficiency support group. They have a wealth of information.
https://www.facebook.com/groups/PAB12DSupportGroup/
Marpy says
Thanks Tracey – I will visit the FB site. Base don last blood test, my B12 levels were up around 700. My symptoms were almost completely gone till I started taking the Magnesium and The B100’S . I was never tested for B6 but will ask the next time I am at the doctors (3 weeks). I had read that some people will have symptoms when they go on B100’S as their body has to adjust. Lots of information out there but some is conflicting and so I am trying to get a better understanding. Especially with respect to the B6.
Thank You
Marpy
Brian Johnson, Owner, Ancestral Supplements says
Our early ancestors would have easily exceeded their B12 requirements with just a bite of liver.
In modern times, we look for B12 supplements because it’s easy… comfort is not good for the organism.
Jon says
Yes, organ meats can easily supply B12, and other nutrients like choline; nutrients that are hard to find in other natural foods. Liver and other organ meats are not liked or consumed by many westerners. And anyway, doctors still are recommending limiting the consumption of cholesterol. So nutrients like B12 and choline are not consumed in adequate amounts via natural foods. Doctors and other health professionals also recommend limiting sun exposure and to always wear sunscreen, which helps contribute to vitamin D deficiency. Are doctors working with us or against us. Doctors need to get their acts together. Bad communication, and bad information plagues us.
Tracy Rowe says
Doctors are still following the outdated and debunked Ancil Keys study about fats and cholesterol. And, let’s not forget, statins (cholesterol meds) are one of the most prescribed (and most profitable) medications. Doctors are barely trained in nutrition and vitamin deficiency, and are still trained in theories that are no longer useful. It is up to us to take charge of our own health.
Jon says
Both myself and my father have suffered from fatty liver at one time. In doing about 10 minutes of research on the internet, I found that low choline can be a cause of this condition. I started eating more eggs, and also (on days I didn’t eat eggs) started using a supplement. Fatty liver gone; liver enzymes back to normal. My doctor knew nothing about this. Doctors really don’t know that much about nutrition (as you said).
Brian Johnson, Owner, Ancestral Supplements says
We are the ones that are responsible for our health… no else… just us.
People are so busy trying to get their kids into the best schools… so busy being good consumers… so busy that they don’t bother with health related learnings… until it’s too late. Actually, even then, most people don’t bother to learn… they’d rather pay for advice and pay for some pills. After all, that’s what good consumers do.
A return to true ancestral living is the paradigm shift.
Christopher Burrell says
Can you point me to the study where it was debunked?
Kathy Swartz says
A couple of years ago I had the same thing. Numbs legs all the way to my hips. I also had a very red throat that didn’t allow me to eat hardly anything. Finally I was diagnosed with a B12 deficiency, my level was 75. Not good. Hospitalized for 4 days, received shots every day, then weekly and then monthly. I finally gained all feeling back in my feet and legs. Took many months, so hang in there! I have since been diagonosed with pernicious anemia and am not able to absorb B12 through food, just shots. So now I give myself shots every 2 weeks. Monthly was not enough for me. B12 does not stay in my system very long. I’m told everyone is different. So just listen to your body and don’t let anyone tell you that your amounts of B12 are high enough. Also read the book “Could it be B12”? I found it has some good information even though I knew I had a deficiency.
Dutchy says
So crazy how doctors always have people shoot once a month or once per three months even. This is never enough. If you check blood test on the internet for example for b6 or so, they say that if you take b12 injections, one should stop for a week before the test cause it may influence the test. This kind of tells me that the b12 shorts stay in your body for about a week. I inject myself every week instead of what my doctor told me to do it once per 3 months. I found out about my b12 absorbtion problem because I had many, many miscarriages for years. My serum b12 level was 241 and in the Netherlands this means there is no problem but some grey area. I insisted on injections and right after my first shot when I got pregnant again (I got pregnant every month) IT STAYD and I did not have a miscarriage. I also noted my egg came on day 12 when on b12 injections while before it was always day 4 to 9. Now, if I stop injecting for just 1 month, I have my ovulation on day 4, for me this is prove that I need to shoot more frequently so I shoot every week. I also noticed I got back to being tired and depressed again, so I will now take folate with it, I think this should help. I already take magnesium so my hopes are on folate 5-MTHF (don’t take folic acid cause that chemical fake stuff that can cause problems).
Julie B says
About a year ago I was finally tested and found to be B12 deficient. 138 My numbness was all the way up my legs past my hips. I was afraid I was headed for a wheelchair. I started taking the shots and my numbers responded quickly. I still have numbness in my feet. I am wondering if this will ever go away. Is there a therapy or exercise? another vitamin supplement?
Stephanie harvel says
I have read about b12 patches you can get online. That’s my next try. I’m getting injections every week for the last 6 months or better and I’ve barely creeped up to 300. I still feel like garbage but better than before.
Divya says
Hi
I was diagnosed with b12 deficiency 2 years back(with level = 130 )and was treated the normal way (B12 shots every day for a week, then weekly and then monthly for 3-4 months). I got my levels checked, they were around 700. Almost all of my symptoms were gone. But now since 3-4 months, I started feeling the symptoms were coming back. I started taking b12 shots 1000 mcg monthly and I feel better. Anyone out there felt the same? or anyone taking B12 shots since many years?
Joey says
Try jarrow b12 lozenges from Amazon. I heard some users getting limits of 1999 because she took too much, like 3 a day which is way to high. Recommended dose is 1 per day you can chew. I took one today for the first time and man I felt great. Pure clarity and calm.
Tracy Rowe says
have you been tested for Intrinsic Factor antibodies? It sounds like you might have an absorption problem which could indicate Pernicious Anemia. Have you had other blood tests? MMA and Homocysteine? Elevated levels are also indicative of PA. It would explain your recurrence of symptoms and the lowering of your b12.
Jennifer Laird says
First I will say I do work for this company, but I was general reading this article and wanted to at least reference B12 Topical Patches for anyone to look into.
patchmd.com
Josie says
B patches have been proven ineffective because the B molecules are too large to be absorbed trans dermally.
Nice idea but does not work.
Marly says
My daughter was diagnose with a seveve vitamin B12 deficiency . She has had one B12 injection.She has a severe case of under the skin swelling, itching and peeling on her face, ears and moving onto her neck. Her face is red with leather like spots. Could this be as a result of her b12 deficiency? She has had it for 6 months and doctors say it is eycema and will have to live with it. The only treatment of the symptoms that helps is acupuncture but they isn’t treating the cause! Her skin is back to normal after a treatment but lasts only about 3 days. What are your thoughts and/or suggestions? HELP!!!
Stephen says
I recommend looking for a doctor that is trained by Dr. Walsh. http://www.walshinstitute.org/
Oliver says
Is your daughter eating the same things as you and the rest of the family are eating – more or less?
Joey says
Try apple cider vinegar or baking soda. I hear turmeric supplementation also but no first hand experience.
Nizoral 7oz shampoo also.
GODJoey says
Also this chewable jarrow b12 lozenges. Very potent. Users reporting very high levels if more than one per day was taken.
Tracy Rowe says
supplements only work if the person does not have PA. It is a good idea to test for Intrinsic Factor antibodies to be sure.
Amy says
Dr. Kresser, I didn’t see MTHFR mutations as a cause of B12 deficiency. Is MTHFR homo- or hetero- zygous mutations not a cause of a deficiency?
Maria Lopez says
I had been having trouble for 3 years with tingling in hands and feet. Thought it was topamax i was taking for migraines. Past year i almost fall asleep while driving heart palaptations in last 2 months had gotten so bad I thought i was having a heart attack. Leg cramps were waking me up at night, started drinking coconut water with potassium which helped a lot with those. But chalked it all up to thyroid. Went to dr and she tested my b12…im at 182 deficient. I have started shots. 2 shots, one a week so far. 2 more in 2 weeks. Then once a month for 3 months. My heart palaptations have stopped….one now and then. Leg cramps so so. Tingling is a little less. I now itch like crazy no hives. And mild headaches are slowing that were getting bad. I hope this works.
Stella says
Leg cramping is due to Magnesium deficiency most likely since calcium is a muscle control tractor(and we get more then enough in our diets) magnesium is a muscle relaxer! I love it and take powder form of magnesium twice a day in warm water (the blue bottle brand Calm found at whole foods! Cheers!
Cynthia says
Hi. I read some of the comments and replies on this conversation. I am too a B12 deficiency for almost 2 years now. At first, I tried the over the counter tablet but it made me so constipated!. Then, I talked to my doctor that I don’t want over the counter B12 vitamin and she suggested the B12 injections. Right now, I have been doing the injections. When my lab work results came out, it was low 152 and I have 4x a month B12 injection until it went down to once a month injections. From time to time, it will be almost normal B12 range then it will go down again. But one thing that really help me is eating liver! My mom will cook for liver and I will eat it for a week then my symptoms will be gone..
Human Fuel says
Azolla an aquatic fern and algae spirulina and chlorella are the best and naturally source of Vitamin B12. The Good thing about this is that they are tasteless so you can add flavour to it. Try these, after that, your Vitamin B12 deficiency is controlled.
nikki says
did you read the article? B12 is not plant based…..you can’t get b12 from plants.
Mike says
I wish folk would get it right:
Many people say that the only foods which contain vitamin B12 are animal-derived foods. This is untrue. No foods naturally contain vitamin B12 – neither animal or plant foods. Vitamin B12 is a microbe – a bacteria – it is produced by microorganisms
inom says
That part sounds like a joke. According to this article, logically all vegetarians should have neuropathy and severe symptoms. My whole family and forefathers have been vegetarians for thousands of years, one of most healthy and happy people on earth. i personally don’t recommend being veg or no veg, but this article is surely misleading.
Tracy Rowe says
Vitamin B12 CANNOT BE FOUND IN PLANTS. Period. The only edible source of vitamin B12 is through meat. I’m sorry if this violates your sensibilities, but numerous scientific studies have proven that cobalamin is only found in meat and the B12 found i plants and micro organisms is an analog. Until the analog is consumed and digested and absorbed into the animal’s body, it is useless to humans. If you object to eating meat, use a b12 supplement.
Jr says
There are no natural plant substitutes for a true B12 plants carry a sub catagory which is of no use to human use and can actually make uptake of genuine B 12 less effective Many vegetarians / vegans are under this false illusion and are making themselves sick.
Veronica says
Thanks Chris. Really love your work. I just wanted to share my experience with b12 and spirulina. I was vegetarian for 8 years and took spirulina consistently in high dosages for months. I then went to the doctor to test my nutrient levels and she was surprised to see how high my b12 was i.e over 1,000. The only thing we could put it down to was the spirulina. The spirulina I use is 450% RDA in b12. So perhaps there is some spirulina that works to build b12? I’m no longer vegetarian and prefer to eat the Paleo way, however still take small doses to keep my nutrient levels up.
Alison says
Hey spirulina has the inactive form of vitamin B12 which your body can’t use and it may block your body from absorbing active vitamin b12 found only in animal products. It will also appear as b12 in your serum B12 blood test (the serum blood test does not differentiate between the active and inactive forms of b12 but measures all cobalamins). To check whether you actually may have a deficiency get the blood test called Active B12 from your Dr. If you have any of the symptoms please get it checked as it can cause permanent brain and spinal cord damage if left too long.
Tracy Rowe says
you can have high serum B12 levels and still be deficient. An Active B12 test is the only way of knowing if the B12 in your blood is actively being used by your cells. Usually about 80% of serum B12 is inactive and useless.
Susan George says
B12 deficiency is a real serious matter. It is really one of the prior reasons for infertility among people.
Shannon says
Hi Chris, thanks for writing the article. I live in Canada and have had digestive issues since my teens, so yes I take prescription and non prescription ant acids. I’m 44 now. I have also been diagnosed bi-polar with anxiety since 18 and degenerative disc disease since 30..I could go on. Anyway I have been having worsening symptoms and went to my doctor. He ran many tests and said he would call if something came up. no call came, not shocking. Lucky for me I was able to get my results on line. My B12 is 188 no MMA was done but it did show High RDW 15.2 looking that up said possible PV, but explained it was unusual blood cells. I think I’m B12 deficient how do I get my doctor to help me if test as far as they are concerned are fine?
Marpy says
imo – Your doctor may have missed picking up the low reading in the results. Discussing it with him may be an idea. As well, you can pick up B12 supplements at places like Bulk Barn and Shoppers Drug Mart. I had an initial B12 reading slightly lower than yours and I took B12 vitamins I purchased at Bulk Barn. It took a couple of months before most of my symptoms were gone but it did work in my case.
John says
Check,for Celiac disease
Brenda says
Ugh I wish you would do more research and rewrite this article. Up to 60% of people have a methylation issue and can not process the synthetic cyanocobalamin that food is fortified with. It actually causes more problems.
Also advise to people to get a blood test results in a false negative with this part of the population. I test that I have too much which perplexes the doctors as I’m vegan. My first test was prior to me eating vegan. My mother eats meat and lots of eggs and her test results are the same too. This is because this fake vitamin cyanocobalamin is floating around unused in our blood stream.
There is study I guess you missed that supplementation with nutritional yeast corrected the b12 deficiency in a group of raw foodest.
There is more updated news in these comments than in your article. This is a horrible and eventually fatal imo so people need the truth.
alia says
So i was diagnosed with a b12 deficiency of 90, i had tingling, numbness in my leg & hand, heart palpitattions. I have had 5 i injections yet in 2 weeks. I dont think I am getting better. How much time does it take? Also, since i have been taking my mecobalamine shots my heart palpitations have increased and i cant sleep properly. Please tell if it will get better!
Molly says
B12 uses up minerals, perhaps potassium, magnesium, and possibly calcium are needed? I take 2,000mg potassium daily in 4 doses and all heart issues stopped. Occasionally I need more. If you choose to try minerals, start low like with 300mg in the morning and evening. See if it helps.
Magnesium may also help, I take it as well. Start with a low dose like 100-200mg in morning and evening and see if it helps. You can take more as needed. I do not take calcium because I eat a lot of raw cheese which has a lot of bioavailable calcium in it.
Best Wishes.
Em says
Molly, I am sincerely worried for your health. (I don’t know where you have been receiving your information.)
1. Unlike sodium, magnesium is a scientifically PROVEN cause of hypertension, and a very, very, very minuscule number of people in the world would need to take magnesium supplements. Most (if not all) of these people would need to NOT use the supplements for an extended amount of time. … The popular belief that salt causes hypertension is based on a correlation, NOT a causation.
2. The 2,000 milligrams of potassium is an enormous amount to be taking daily.
3. From the numerous medical journals I have read, (unless a person has an EXTREMELY rare contrition or are severely anorexic/bulimic), the only supplements that can be taken daily without severe side effects are B- vitamins (and B-12 can safely be taken in extremely high doses). Also (from what I have read so far), the only mineral supplement that people may need to take OCCASIONALLY is zinc.
(THE ALL CAPS IS FOR EMPHASIS, I AM NOT YELLING AT YOU.) 🙂
Em says
*I meant the only supplements that are safe and may be necessary for optimal health (caused by our diets, the industrial production of food, and the long list of unnatural pollutants, etc.) …
Also, I forgot to include the fact that sodium bicarbonate is helpful for maintaining kidney function, and Vitamin D (cholecalciferol) is also safe to take on an as-needed basis.
Vitamins A, C, E, and K -as well as potassium- are UNNEEDED if you eat anything that’s naturally green or orange, even if it’s only in a pie formation or a juice.
Jeanmarie Todd says
Your comments are so full of misinformation, I don’t know where to start. Here’s one: Vitamin A is not found in “anything that’s naturally green or orange.” You’re apparently thinking of Beta-carotene, which MAY or MAY NOT be converted in the body to true Vitamin A, which is only found in animal foods. Many factors make the conversion difficult-to-impossible for a large percentage of the population.
Molly says
Sources: Dr Linus Pauling, PhD; Dr Abram Hoffer, MD, PhD; Dr Andrew Saul, PhD; Dr. Carolyn Dean, MD, ND; and 2 bookcases of books, including text books, and sites like this one – many of them. And quite a few videos.
You are kind to be concerned, but please don’t worry. I know my history, you don’t. What I will tell you is that I’ve been able to fully reverse neuropathy in both feet and eliminate heart issues such as palpitations, pounding and skipped beats. All in all, a nice improvement. Ever onward!
Em says
The problem with receiving medical information (aside from definitions that have not been revised over time) from books is that literally any person can write (or dictate), publish, and sell a book. Also, many health/nutrition books are written using epidemiological and sometimes entomological studies as their supporting medical evidence. (It is scientific evidence, but it’s not solid medical evidence because it does not provide causation.) Reading numerous peer-reviewed scholarly articles published in different medical journals on each subject is the best way to justify any nutritional practice.
Molly says
Peer-reviewed scholarly articles are rampant with fraud, even the NY Times has had articles about this, along with the Washington Post and others; it’s big news. I read actual studies, also often fraudulent, but when thoroughly read such fraud can often be discerned.
You said:
1 – “magnesium is a scientifically PROVEN cause of hypertension.”
No, the lack of Mg is a proven cause of hypertension. It is used in cases of heart attack in hospitals to save lives, and it does. Research has proven that proper levels of magnesium will lower insulin resistance, lower blood sugar, and aid in the prevention and treatment of complication of neuropathy and retinopathy. Magnesium enhances blood flow through damaged vessels, and prevents or delays the onset of type II diabetes. Without enough magnesium, the heart muscle can develop a spasm or cramp and can stop beating. Ever wonder why heart disease is rampant today? Could be partly due to magnesium deficiency.
2 – “The popular belief that salt causes hypertension is based on a correlation, NOT a causation.”
Maybe. If by salt you mean pure sodium chloride, NaCl, you are dead wrong, it does indeed lead to hypertension and the mechanism is well known. If by salt you mean the genuine article such as any good sea salt, then yes, it does not cause hypertension, it reverses it because not only does it supply all the vital minerals the body needs, it provides potassium which is stripped out of table salt, NaCl.
3 – “The 2,000 milligrams of potassium is an enormous amount to be taking daily.”
It all depends upon the health issues of the person taking it. Doses of 1g up to 11g are very helpful for certain conditions and under certain circumstances.
4 – “…the only supplements that can be taken daily without severe side effects are B- vitamins (and B-12 can safely be taken in extremely high doses).”
This is untrue. Depending upon the forms and the amounts, B vitamins can have very severe side effects; it’s always best to use the correct form to minimize or eliminate those effects. B12 used incorrectly and without folate, magnesium and potassium can cause all sorts of trouble, including severe migraine. The safest vitamin is vitamin C, taken to bowel tolerance.
5 – “Also (from what I have read so far), the only mineral supplement that people may need to take OCCASIONALLY is zinc.”
Also untrue, most of America is deficient in magnesium, as well as zinc, and in sulfur. Many are deficient in potassium. Certain health issues may require minerals not even stated here, many with chronic fatigue need copper, which needs to be taken with zinc…
6 – “I meant the only supplements that are safe and may be necessary for optimal health (caused by our diets, the industrial production of food, and the long list of unnatural pollutants, etc.)”
You are possibly ignoring the effects of poisoning of the cell via various means, and the fact that even some who eat only organic or better, and no processed food whatsoever, are still ill. Any supplement is safe if it is the correct, orthomolecular form, and if your health issues dictate that you need it.
7 – “Also, I forgot to include the fact that sodium bicarbonate is helpful for maintaining kidney function,”
Even sodium bicarbonate can cause trouble such as headache, nausea, and even kidney failure under certain conditions. A person needs to know why they need it and how much to take, and when.
8 – “and Vitamin D (cholecalciferol) is also safe to take on an as-needed basis.”
If by “as needed” you mean people who have either been tested and found deficient, or who have most of the symptoms of vitamin D3 deficiency, I agree: they need it. If, on the other hand, you mean occasional use just for good measure, I respectfully disagree.
9 – ““Vitamins A, C, E, and K -as well as potassium- are UNNEEDED if you eat anything that’s naturally green or orange, even if it’s only in a pie formation or a juice.”
You could not possibly be more wrong.
There was a study done at the University of Washington in Seattle comparing oranges that were grown organically to those grown conventionally. You probably presume that all oranges have around 60mg of vitamin C, like most people think. What they found was that conventional oranges have no vitamin C whatsoever, and those grown organically vary between 10mg and 60mg.
Furthermore, vitamin C is NOT heat stable, so in a pie at least 50% will be lost. In any store bought juice, unless it is unpasteurized, again 50% or more of the vitamin C will be destroyed by the heat. Store bought juices are nothing more than colored sugar water, so for good nutrition you must have a good masticating juicer and juice your own. It’s a great idea, I have one, but it’s not cheap and it’s not easy.
As for vitamin A, the analog is found in fruits and vegetables in the form of beta-carotene. Genuine vitamin A, the group of retinoids that includes retinol, retinal, and retinoic acid, is only found in animal foods such as liver, butter, seafood and egg yolks and cod liver oil. The ability to convert beta-carotene to vitamin A is highly individual, not all are efficient at it, some cannot do it at all, and the ability to convert declines with age starting around 20yrs old. Beta carotene is not an adequate substitute for retinol, true vitamin A. All the fruits and vegetables in the world will not adequately substitute for the real deal.
Most people need more vitamin E than they can possibly get today since the germ is stripped out of refined flour and our current society is fat-phobic (vit E is a fat soluble vitamin, found in wheat germ oil, almonds, sunflower seeds, avocados).
As for vitamin K, it is found in more than just colored vegetables or leafy greens. It can be found in dark chicken meat, pork sausage, baby back ribs, goose liver, hard cheeses such as Emmental, Jarlsberg, cheddar, bleu and Edam; eggs (yolks), butter, and natto. In fact, only K1 is found in leafy greens, K2 (MK-4) is found in animal foods, and MK-7, MK-8, and MK-9 are found in fermented foods such as cheeses and natto.
Finally, since there really is no one-size-fits-all-protocol for health, everyone should read and carefully consider for themselves. That is the beauty of a site like this one, with conversations back and forth that help others as well as ourselves.
Tracy Rowe says
Brilliant! May I add a few things? Vitamin B6 should be taken carefully, as high amounts can be toxic. If supplementing with B vitamin complexes containing B6, it is best to follow a 4 month on 2 month off regimen to avoid toxic build up. Potassium should ONLY be supplemented if you are tested to be low. High levels of potassium can cause hyperkalemia, a dangerous condition that can affect the heart and lead to stroke and other heart issues. It is best to supplement with potassium rich foods instead of synthetics. Vitamin B12 needs folate (folic acid) to properly metabolize. It’s important to a) have folate levels checked, and b) if on injections especially, supplement with folate or folic acid (depending on which your body tolerates better) at injection time to make sure you are getting the benefits of the injection. Finally, if severely deficient, cut out alcohol (if you drink), and, I swear to god, foods like Redi Whip, which use a nitrous oxide propellant. Also, smoking can make a difference as to which form of B12 will be effective.
Pernicious Anemia (the form I have) is difficult to diagnose, as current testing is not always accurate. IF antibodies test is the current model for testing for PA, and is only accurate about 60% of the time. Supplementing with b12 before testing for deficiency can also skew results, and you should be off supplements at least 4 weeks (longer, if possible) for a more accurate reading. Once you start treatment (especially injections) further testing of B12 is useless, as it will always skew high. Elevated serum b12 levels after treatment only indicate how much b12 is in your blood-NOT how much is being used by your cells. An Active B12 test is the only indicator of how much vitamin is actually being utilized, which is usually about 20%
Molly says
Agreed! And thank you. In my case, potassium reversed all heart issues I had – because they were a result of potassium deficiency and not magnesium or calcium deficiency.
No processed food in this house, either; all organic or better.
Oliver says
Molly – you have an outdated understanding of nutrition one, and two – you really need to back away from nutrient supplements – all of them. Of all things science knows the least about in minerals and what we do know is the damage they can cause when taken as supplements. Just east some normal raw foods along with your burger and you’ll be a lot better off.
You are on the most slippery of slopes with all your supplement taking and you will never right your ship – and it will get worse for you.
===What we do know is that many elements can negatively impact other elements. For example, many minerals do not ‘get along’ with other minerals – they can cancel each other out; long-term, doses of zinc can cause copper deficiency; Calcium will compete with other minerals to reduce their absorption, as well as Magnesium;
In short, so many vitamins and minerals, especially in the concentrated form that are supplements, can have an adverse chemical reaction when they meet up with other chemicals and chemical processes in your body – including the depletion of many vitamins and minerals – the ones you naturally make and use.
This is especially so with minerals which in large part act as catalysts, chemical elements that trigger many of the natural chemical reactions in our body. Minerals are co-factors for most biological reactions. Without minerals, vitamins have little or no effect. Minerals, each and every one, play an uber key role in how each and every vitamin works in the body. Minerals are basically the spark plugs of life, or keystones to our health. Minerals are the catalysts that keep our ‘battery‘ going and hold it’s ‘charge’, and have so much to do with how our body creates and uses our vitamins. Minerals are co-factors – triggers for thousands of essential enzyme reactions in the body. No trigger – no reaction – no vitamin effect.
Stop taking mineral supplements.
Jeanmarie Todd says
Thanks for adding all that helpful detail, Molly!
Stella says
EM! Pls do t be telling someone not to take Magnesium. So many people are deficient in it and being in healthcare. I can tell you. It is a muscle relaxer and gets rid of palpitations and cramping most athletes take it after a good sweat. In fact I take it twice a day and so does my mom who 5 years ago at 80 she diagnosed with chronic heart failure! (Likely due to excess calcium that some idiot told her to take. Magnesium glycinate (powder form for quick absorption) and K 2(Japanese natto) has totally reversed her CHF !!! Doctor was pleasantly surprised. And called it a miracle. I call it a deficiency. No one person eats the same so we don’t all need the same supplements however that one is a bigge. Studies have shown that men qith prostrate xmxer all had a Mag deficiency! So do t l ow here u got your info from!!! And last n bits are awesome and yes cows eat greens and greens have B12 gee ppl!
Molly says
Also, cobalamin should not be taken in the evening, it will keep you awake. I don’t take it after 2pm.
Magnesium relaxes muscles and helps with sleep, take it 30 min. or so before bed and see if it helps.
inom says
Hi Molley
I have heart palps and other symptoms for over one year, been supplementing magnesium, but no help, I have been thinking of potassium link, would you mind sharing how you decided to supplement with potassium? Mine blood levels are normal, but there might be some other test i can look?
Molly says
Same here, I was already taking magnesium and using Celtic sea salt, but got heart palpitations anyway. I read about potassium and thought about it and decided to try it. My blood work was extremely good – but I was not well so the bloodwork was useless. If a test says you are fine and you are absolutely not fine, the test is useless, please don’t rely solely on blood tests! They are supposed to aid in diagnosis, they are not the final word. Symptoms are much more useful in determining your health issues simply because you know how you feel. [Blood work only shows what is in the blood at the precise moment in time when that blood is drawn. It does not show what is in the cells, it does not show what is in the blood before or after the blood is drawn.]
In general, people need to eat an average of 4,000mg of potassium per day. I started with 3x99mg capsules for 3 days and increased that by 2 more until it worked; holding each increase for 3 days to give it a little time.
If you read allopathic mainstream medical sites they are panick-stricken by the idea of overdose, but if you read alternative sites and orthomolecular ones in particular which have actual data, you will find that it’s not all that easy to do – especially if you need potassium. It is water soluble and does not stick around so the danger is low. The form also matters, potassium citrate and potassium gluconate are good, I use them both. In a pinch I have used potassium chloride (potassium salt!).
I take potassium with each meal and before bed. My husband only needs to take potassium once per day – we are all unique so you will have to figure this out for yourself by doing it. You will find your dose amount and you will find the times to take it by trying it out.
For me, potassium takes 15 minutes to work – it’s very fast.
Best Wishes for your health!
Stephen says
Could there be more going on with your biochemistry that needs looking into? http://www.walshinstitute.org/biochemical-individuality–nutrition.html
Marpy says
In my case, I only used supplements (no injections) and it took between 2 and 3 weeks before I noticed some improvements. My understanding is that it takes some time for the bodies systems to utilize the b12 and fix what is going on with the nerves and other affected area’s. I also had H Pylori which was causing b12 absorption issues. I think Stephan brings up a good point and there may be something else going on as well that needs to be investigated. From my own experience, it can take a while to get it all sorted out.
Marpy says
I also started taking a multi vitamin at the same time as I started taking b12. My thinking (never substantiated) was that I might be low on other vitamins as well.
John says
I think you are probably correct, it would be amazing if B12 was your only deficiency. A multi that incorporates mB12, methylfolate, P5P, other B vitamins, A,C,D,E, and bio-available minerals may be a good idea. And as you’ve found out, rarely are adequate amounts of magnesium, calcium, or Vit D included in these (you probably need to add them separately). And I agree with other posters, it will take time. Regarding B12, the Swedes have found that oral methylcobalamin can be used even in people that have absorption problems because some will be absorbed through diffusion in your gut. They recommended 2mg mB12 two times per day. You may be able to find this research online. PS, don’t forget sodium and potassium as well.
Tracy Rowe says
oral b12 is not useful in all absorption issues. It is important to remember that if you have PA, there is no way to absorb b12 through the digestive tract because the body no longer has any of the protein (Intrinsic Factor) necessary to absorb b12. I that case, injections are the ONLY effective treatment. It should also be noted that, when supplementing b vitamins, you should be careful with B6, as high amounts are toxic. It’s best to follow the 4 months on two months off regimen to keep b6 at a safe level.
Oliver says
That’s always the giant elephant in the room, as regards drugs and vitamins etc.
Gerald Landry says
alia, have you considered B1, thiamine deficiency as a cause of the tingling? Do you suffer burning sensation in the feet also? Lower down i have more of an explanation.
Re-quote: Quote: Chronic exposure to nitrous oxide has been associated with subacute combined degeneration [15]. The mechanism by which nitrous oxide induces vitamin B12 deficiency is by inactivation of methyl-cobalamin thereby inhibiting the conversion of homocysteine to methionine and methyltetrahydrofolate (MTHF) and 5-methylene-tetrahydrofolate (THF), which are required for myelin sheath protein and DNA synthesis.
Ref: Nutritional Neuropathies – NCBI – National Institutes of Health
https://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)
by N Hammond – 2013 – Cited by 11 – Related articles
Thiamine (vitamin B1) is a water-soluble vitamin present in most animal and plant tissues. Neuropathy due to thiamine deficiency, known as beriberi, was the first … features of thiamine deficiency begin with distal sensory loss, burning pain, …
Hope this helps in joining some dots. In Canada we are limited to buying 100mg of thiamine. Larger doses are available in the US.
Marpy says
I have a b12 deficiency (my last blood test showed 170 mcg) . My symptoms are – light headed, tingling in my face, mouth , hands and sometimes arms , Involuntary twitches (like when I was consuming to much coffee) sometimes feel depressed, although I have energy once I get going, I do not always want to get going and can feel clammy/ sweaty/ hot face after being active for a while (activity that normally would not result in feeling clammy and sweaty. Eating can make the symptoms worse or bring them on – especially breakfast. Symptoms began to develop slowly about 6 months ago and would be worse after some considerable physical activity . they are now present most of the day although they may alternate and I do get some periods when they are absent.
I suspect that my B12 deficiency is quite likely diet related as my son is a vegetarian as such although I do consume some meat products, it has been less than I used to for a number of years now as we cook with his diet in mind a lot of the time.
My doctor has told me to take over the counter B12 which I am (Webbers 1200 mcg) – cyanocobalamin). After reading this form, I am going to get the under the tongue type and look for methylcobalamin or hydroxycobalamin.
2 questions for this form please.
1) Are my symptoms typical of B12 deficiency (especially tingling in the mouth) ?
2) How long after taking b12 supplements should I start to see a difference?
Thank You
Kymm Gardner says
yes, the tingling in the mouth and your other symptoms are typical of B12 deficiency symtoms-absolutely.
Glad you will be looking for the other forms of B12, -sublingual and methylcobalamin-you can find them on amazon 5,000 mcg-I took those five under tongue at a time on the hour for five hours, then noticed a difference-excessive, but it worked. I took high quanities for days, and slowly over time brought the dosage down I now take 7 of these tablets a day, which is comprable to one shot a month…Good luck…
Marpy says
Thank you for the reply. I will be seeing a neurologist team in a couple of days (my doctor booked me as a result of my symptoms. I am now taking 3600 mcg of the webbers b12 as well as a multivitamin that contains b12. My thinking is that I will wait till I here what the Neurologist team have to say and what testing they want to do and then get the better quality b12’s. For sure, I am b12 deficient but I am not sure what else may be going on.
Again thank you
John Macgregor says
Just worth mentioning that the forms of B12 you actually need, which the body makes (out of hydroxy & cyano), are methyl & adenosyl, & if you can’t make them (efficiently), as some can’t, you need to supplement them.
You can swallow a pill (1% uptake), suck a sublingual (5%) or use the new transdermal approach pioneered by http://www.b12oils.com/ – perhaps 80% uptake.
After switching to this product (with which I have no affiliation) I could lower my doses.
Iqra says
Can b 12 deficiency be completely overcomed by managing diet ?
Marpy says
YES – If the primary cause of the B12 deficiency was dietary in nature then there is no reason why a change in diet to include more meat and B12 reinforced foods should not be able to maintain a healthy B12 level once its back where it should be. Also once the problem causing/ making the deficiency worse is solved ( H-Pylori in my case) then diet would go a long way in keeping levels where they should be.
Stephen says
Could also be a magnesium deficiency. http://drsircus.com/medicine/magnesium/magnesium-deficiency-symptoms-diagnosis
Marpy says
Thank you – looks like it is a possibility. I am taking a multi vitamin That contains 5.5 milli grams of magnesium sulfate (just started) . With b12 it can take a while to get over it and feel better – 3 months or more. Any idea of how long it takes to get over it with a magnesium deficiency? Does age have anything to do with it? i am 60.
Stephen says
5.5 milli grams of magnesium sulfate (just started) is a small amount. Depending on sex and age us adults need somewhere around 400mg a day. I started this last night. For me it has helped to feel markedly less anxious, improved mood, significant reduction in restlessness, quieter mind (not racing thoughts). I also take Vitamin D due to deficiency and a natural testosterone booster (i’m male) due to deficiency.
Marpy says
i was also wandering – how many people that are b12 deficient get all the symptoms I do? I seem to have an awful lot going on. Are all these symptoms common for B12 deficiency?
Some answers would be very helpful for me.
Thank You
Kymm Gardner says
Oh , the symptoms for B 12 deficiency go on and on, and affect different people differently. And there are numerous ones. I recommend checking out the site…www.B12 Awareness.com, there is a documentary on the left side-there are a couple, one is about an hour long. You can find it on you tube too. Well worth watching, you may end up even saving your own life, as I did mine. With levels as low as yours, yes all of your symptoms can be from B12 deficiency. Please do yourself and possibly others a favor and watch that documentary!
Kymm Gardner says
actually it’s http://www.b12awareness.org
on the left side are 3 videos, watch the one in the middle-very informative
Marpy says
I have learned a lot from this form – thank you. i am early in my situation and will post as i learn more so that others may be able to learn something from my experience.
I have also bought some Swiss natural ( 1000 mcg b12 – cyanocobalamin, 600 mcg folic acid, 25 mg b6) as well as my original (Webbers 1200 mcg) – cyanocobalamin). The Swiss natural are chew able and so I am suspecting that just like the under the tongue type you get better up take. I am now alternating between the 2 – taking one in the morning and the other at night with my multi vitamin. I will some times take another chew able mid day depending on how i feel. i have only been at this for about 2 weeks and I know my symptoms can be cyclical – the off balance feeling seems to be the one thing that is their most of the time and it was i believe my first symptom on and off 6 months ago. I have low stomach acidity levels as I do not get heart burn regardless of what I eat and my diet had a lot of the time minimal natural b12 products for years.
My doctor told me to take 1 – 1200 b12 tablet once a day and I am at 2 – 3 times that. I understand that B12 is water soluble and overdosing on it is not an issue but I am wandering about the impact on organs/ body (liver, kidney bladder etc.) from dealing with large doses of B12. it has to go somewhere even if the end result is that it goes through you. Any insight on this would be appreciated.
thank You
Marpy says
Went to one specialist for emc testing (where they fire impulses through your nerves and measure the response) Findings were minor to no problems but based on my symptoms, this specialist is sending in as request that I be sent to a neurologist for further testing. in the mean time, I continue to take my B12 supplements (3 tablets /day – a combination of Swiss natural chew-able ( 1000 mcg b12 – cyanocobalamin, 600 mcg folic acid, 25 mg b6) as well as my original (Webbers 1200 mcg) – cyanocobalamin). ) Symptoms are not as frequent and not as intense. I am noticing that certain foods that were never a problem before can bring on symptoms. I ate 4 or 5 of those Halloween chocolate treats last night and symptoms seemed to come on with a little more intensity after words. I am not sure if this is a coincidence though.. I am wandering about others experience with respect to certain foods. Any feed back would be appreciated.
Jon says
Are you sure it’s cyanocobalamin you need, and not a bioactive form? Are you sure you need folic acid, and not methylfolate? You might be like many of us, and need methylcobalamin and methyl folate.
Marpy says
As I eat a lot of stuff with folates in it, I suspect that i do not need the folic acid. i figured that out after I bought the supplement. I am seeing my doctor Nov. 1st and will review with him. That may be hit and miss as I am not sure how much he knows about this stuff.
John Macgregor says
Probably not much if he’s an average doc.
The other big issue IMO is uptake. With oral (swallowed) you get 1%; sublingual maybe 5%; transdermal (Australian brand) 80%. I noticed a big difference switching from the sublingual to the transdermal & was able to lower my dose.
Marpy says
Thanks for the reply . I am in Canada so am not sure where I can get the Australian brand. I did pick up a bottle of Swiss natural chew-able ( 1200 mcg b12 – Methylcobalamin sublingual tablets after learning on this form that they are better. cost was about the same as the cyano tablets. Methyl seems to be widely available in Canada but I have not seen any transdermal (Australian brand.
John Macgregor says
The Australian brand is at http://www.b12oils.com/
(I don’t have any affiliation with it, tho I have got to know the scientist-owner via his remarkably generous question-answering.)
You have to be careful with the sublinguals. A poster named Freddd at the Phoenix Rising CFS forum has tested the brands extensively, & found the majority to be sub-par or duds.
I found that the sublinguals worked if you kept them in your mouth for 45+ minutes, but they rotted my teeth a lot; plus the ride was quite a bit rockier than with transdermal, which is very smooth & even due to the gradual (6-8-hour) uptake.
Marpy says
Thanks for the Info John M.. So far the combination I am taking seem to be working for me (symptoms heading in the right direction). So I will probably stick to what I am doing. I will definitely check out the Phoenix Rising CFS forum.
Em says
Hi Marpy! First, multivitamins/mineral supplements are unnecessary. The B-12 would be just fine. If you want a B-complex vitamin supplement, I would recommend you look for “Alive water enhancers” at the Vitamin Shoppe (.com) …or from a different website, if they don’t deliver to Canada.
Second, you may want to consider consuming a small amount of sodium bicarbonate daily. It is proven to help maintain kidney function… and it sounds like your kidneys could use the help. (Baking soda may also help with IBS and cleans teeth well.) If you have trouble producing saliva (spit), you may want to mix with a little water. Arm&Hammer is a good brand. Always make sure there is a nutrition or drug facts label before purchasing.
Lastly, you may be experiencing “heart palpitations” from having a bit too much magnesium (and/or copper) in your body at the time that you experience these “heart palpitations”. Magnesium and copper in excess have been proven to cause hypertension (high blood pressure). Very light arrhythmias or heart palpitations can also be early signs of hypertension. Coffee and cocoa powder are often the sources of an abnormal amount of magnesium, and coffee can also contain an unusually high amount of copper.
Stephen says
cyanocobalamin isn’t a natural form of B12. It is synthetic. Possibly you might do better with a ‘natural’ methyl form. http://www.onegreenplanet.org/natural-health/the-top-things-to-look-for-when-choosing-a-vitamin-b12-supplement/
Marpy says
Thanks for the reply -= I am going to the doctor on Nov. 1 and am going to see if I can get injections. Based on the outcome of that visit – I will pursue the better forms of b12. if I keep taking the oral forms, I will switch from the cyano.
Bonnie says
Don’t you mean wondering instead of wandering!
Bonnie says
Marpy, excuse me, but don’t you mean “wondering” instead of “wandering?” Two different meanings entirely.
Marpy says
Yes – you are correct Bonnie. ;-).
On the B12 subject – i got a call from my doctors office and he wants me to stick with supplements for another 2 months before he will consider injections. He has me scheduled for a blood test them. I can live with this as the supplements seem to be working well for me. Symptoms are almost all gone and I am almost done with the antibiotic treatment for the H. Pylori. H. Pylori seemed to be making my B12 problem worse than it otherwise would have been. which
Marpy says
I got my blood test results today and after 5 months of taking over the counter B12 supplements, switching to B12 fortified milk, and eating more meat, my B12 level is 703. My symptoms have been gone for some time. As i did not seem to have any other complications, in my case the above changes seem to have worked. For people in Canada and specifically in Ontario and BC, if you go to Life Labs for your testing, you can look at your results on line a few days later for no additional charge. The testing is free regardless of where you go as it is covered by government insurance but the other lab company I went to in the past charges for on line access to your results.
Crissy says
Please reconsider taking the under the tounge dissolvable tablets. I took them & what they do not tell you is the ingredient used to cause the tablet to dissolve also rots your teeth. My front bottom teeth started to turn black & I realized it was after using the tablets for about a month. I contacted my doctor & told them because she had recommended them. The nurse told me to discontinue & go to liquid drops or pills. After stopping & meticulous brushing & dentist cleaning my teeth are back to normal.
Marpy says
thanks for the info. I am talking to my doctor about injections and the sublingual B12 i am using dissolves rather quickly . i will monitor for any changes in my teeth though and hopefully will be getting injections. I have also been diagnosed with H. Pylori which is a stomach infection that can lead to absorption issues with B12. I am on a antibiotic treatment plan to get rid of the H. Pylori and so hopefully that will lead to improvements as well.
Gerald Landry says
Marpy: Do you use cow dairy, because with you stating that : Eating can make the symptoms worse or bring them on – especially breakfast, and that your symptoms would be worse after some considerable physical activity, I suspect you are overproducing Lactic acid which exercise and/or diet can drive up.
I suffered similar symptoms from inhaling methanol from Pulp Mill emissions (ref: comment to Paul). My conclusion is that the cellular Lactic acid we produce is first cousins to the Lactic acid in cow dairy. Also foods with aspartame which has a formaldehyde component metabolizes to lactic acid. First to Formic acid in the liver (which may cause the burning tingling mouth) then to Lactic acid in all our cells. There are also many sources of environmental formaldehyde which when inhaled build up through biochemistry and metabolism converting to formic acid then cellular lactic acid. Vehicle exhaust, carpeting, new waterproof drywall etc.
Since every cell is an energy furnace (mitochondria) the ATP energy conversion can be impaired possibly onsetting fatigue. High lactate levels can also onset muscle burning and cramping. If the cells are impaired, high Carbohydrate intake can metabolize to lactic acid (anaerobic glycolosis) further complicating pain issues. The remedy to this is to eat smaller portions of high carbs or glucose which we still need for energy conversion, much like the practice of grazing, eating smaller portions 5 to 6 times per day, or whatever the body craves.
Minnesota Poison Control’s paper on methanol toxicity shows the sequela with the conversion process of metabolism and biochemistry. Note folate (folic acid) is used by IV in the ICU Unit or ER. Ethanol is even used as an antidote. Quote: Formate inhibits mitochondrial respiration leading to tissue hypoxia and lactate formation. Formate production occurs in the retina and may lead to optic papillitis and retinal edema.
http://www.mnpoison.org/educators/medicalprofessionals/NewslettersandReviews/Methanol/POISON_DATA_145
Marpy says
thanks – lactose intolerance is not an issue for me. I was consuming a lot less cow dairy when I was having a lot of issues than I am now. I am now drinking milk fortified with b12 and many other vitamins and my symptoms are much improved. i can see how for some people lactose would be an issue.
deanna says
Couple very important things I learned about B12, just this year. Eggs have very low absorption rates of B-12-only 9%, so don’t count on getting B-12 there. Also, farm production animals typically drink chlorinated water in the barn, just like people in their house, so their only source of B-12 is the dirt on the grass or in their feed which is supplemented with B-12. I am not sure how well regulated this B12 supplementation of feed is. Studies found that those with highest B-12 were not the big animal product eaters, but rather, those who were taking a supplement and/or eating fortified foods- think Cheerios, or plant milks (almond, nonGMO soy, oat…)that have 25% RDA in one glass.
Paul Chiu says
Hi ya’ll.
Was lurking and happened to stumble upon this article while researching.
I took a blood test before heading out the country regarding my neuropathy and some numbers I would like to point out: My glucose level is at 90 and my B12 is at 595. I ate a meal before testing(spam, eggs, and bread if I recall), so IDK how accurately these results are, but the glucose checks out, so most likely no diabetes. But I read that B12 levels @ 500-550 are considered to be on the lower end in Europe/Japan.
I’ve seen the doctors on my vacation here in Taiwan and my neurologist prescribed me B12 pills(250 mcg, taken 3 times a day I think). I think they’ve helped a fair amount after taking them for 2 weeks. I’ve noticed less tingling/burning/aching of the nerves but just 2 days ago I ran out of them. Yesterday I opted for Super B Complex by Naturemade out of convenience but I notice it only contains 50 mcg of B12. I took it to start off yesterday morning and I felt pretty good throughout the day until right before I went to sleep when the pinching/tingling began again. Woke up today and was fine until 3ish when the tingling/pinching came back to my dismay. It was improving until that point so IDK if I should chalk to up to inconsistency or a REAL deficiency in B12. Maybe I needa switch back? Maybe I should just give it time and stick to the B complex? How much of a dosage of B12 should I take from now on?
Gerald Landry says
Paul, Thiamine deficiency can be responsible for Neuropathy. Polished rice, wheat, barley have all the B vitamins removed to the point where babies can inherit a thiamine deficiency in the womb onsetting infantile apnea. Dr. Derek Lonsdale worked on this by giving babies mega doses of B1 to shock their bodies into assimilating this most important vitamin that is responsible for motivating our breathing function in our lower brainstem. The American Medical Association wanted to revoke his Medical License for doing Vitamin Therapy. This motivated the start of the Integrative Medicine Group, taking the best practices of Allopathic and Naturopathic modalities for treatment.
I suffered thiamine deficiency from inhaling Aldehyde (hangover component of drinking ethanol) and Nitric oxide from working on an Air Emissions Project inhaling Pulp Mill emissions. People who may have been sedated often with Nitrous oxide anaesthesia or staff in OR and Dentistry inhaling vagabond gases may develop traits of B12 deficiency, plus a bonus of possible heart fibrillation issues.
Quote: Chronic exposure to nitrous oxide has been associated with subacute combined degeneration [15]. The mechanism by which nitrous oxide induces vitamin B12 deficiency is by inactivation of methyl-cobalamin thereby inhibiting the conversion of homocysteine to methionine and methyltetrahydrofolate (MTHF) and 5-methylene-tetrahydrofolate (THF), which are required for myelin sheath protein and DNA synthesis.
Ref: Nutritional Neuropathies – NCBI – National Institutes of Health
https://www.ncbi.nlm.nih.gov › NCBI › Literature › PubMed Central (PMC)
by N Hammond – 2013 – Cited by 11 – Related articles
Thiamine (vitamin B1) is a water-soluble vitamin present in most animal and plant tissues. Neuropathy due to thiamine deficiency, known as beriberi, was the first … features of thiamine deficiency begin with distal sensory loss, burning pain, …
Hope this helps in joining some dots.
Gerald Landry says
Paul Chiu, I forgot to mention Chemically induced Neuropathy can be caused by medications, chemicals and air pollution.
Quote: Management
In addition to advising the patient to avoid the causative drug or occupational or environmental toxin, management of toxic neuropathy can include the following:
Ref: Toxic Neuropathy: Practice Essentials, Background, Pathophysiology
emedicine.medscape.com/article/1175276-overview
Feb 3, 2016 – Toxic neuropathy refers to neuropathy caused by drug ingestion, drug or chemical abuse, or industrial chemical exposure from the workplace …
My work exposure was in NW Ontario at Dryden to Pulp Mill Emissions building an Air Emissions Project. My last day of work on August 2003 there were 59 men on oxygen at the hospital. Being the 13th worker to suffer cardiac issues (we were inhaling potassium from the Recovery Boiler stacks) I knew i had to avoid Pulp & Paper Mills.
After doing a stress test i decided to work in Southern Ontario building a NOx Scrubber at a coal fired power facility to avoid pulp mill emissions. It may have been a perfect storm, but at Dryden my fellow tradesman were suffering burning feet. They would buy more comfortable work boots with no relief in symptoms. No physician ever clued us in that it was Chemically Induced Neuropathy.
It was God’s grace that I survived that winter. We were inhaling a Chelation Agent to remove heavy metals from pulp fibre and my Nutritional Minerals were depleted except for potassium and manganese. I would suffer burning feet, full body cramping from head to toe with full body arching. Embarrassingly collapsing to the ground hoping no one witnessed the sudden fall. I finally went to ER in Southern Ontario in June 2004 because of sock to glove numbness on my right side (Sensory loss in a stocking-glove distribution).
When we left the north shore of Lake Erie and spent a night in a motel at Blind River, I woke up with absolutely no burning feet. We slept another night in Wawa with the same result, no burning feet. I started joining the dots. Work exposure to more polluted air on the North Shore of Lake Erie. Move back up North to cleaner air and my neuropathy vanishes except for vehicle exhaust exposures and chemical off gassing in Big Box Retail Stores.
Crazy as this is, a Canadian Geographic Magazine bought the fall winter of 2003-04 of which I had never read because we were working 6 days a week had an article on the Air Pollution from America’s Industrial Corridor, Indiana, Ohio’s air pollution blowing north over Detroit picking up more pollutants then swinging east over the north shore of Lake Erie over the Nantikoke Industrial Park where the largest Coal fired (8 boilers) facility in N.A. existed, now closed, along with Erie Steel and an Esso Refinery, then proceeding east over Hamilton’s steel mills blowing over Toronto towards Ottawa, Canada’s Capital.
I later read a statement that there are high rates of neuropathy in Southern Ontario, these are my observations from the fish bowl I was swimming in. In the fall of 2004 vehicle exhaust started causing the same symptoms as the pulp mill x-p, which = no RTW. There is formaldehyde in vehicle exhaust which is a component of the methanol chemical chain. Ref; my link to MN Poison Control in an earlier comment.
Gerald Landry says
If President elect, Donald Trump guts the EPA, and encourages more coal power generation and relaxes pollution abatement for other high polluting industry this is one result, chemically induced neuropathy. Respiratory illness will also follow.
Lower limb and hand amputations can result from neuropathy. How convenient, Chemically Induced Neuropathy is in the same class as Diabetic Neuropathy. When i researched this in 2005 it listed 7 classes of neuropathy.
Ref: Types of Peripheral Neuropathy – The Center for Peripheral Neuropathy
peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/
There are many types of peripheral neuropathy, which can be brought on by diabetes, genetic predisposition (hereditary causes), exposure to toxic chemicals, …
B12 is listed as the only Nutritional deficiency in this extensive article.
Mary Lambert says
My mom as always been b12 deficiency. She took shots and now just over counter pills. She shakes inside all the time. Now they say she has.dementia. we are doing blood work. X-rays andore test. I wonder if her b12 could be the problem.
John Macgregor says
In autopsies, demented people have low concentrations of B12 in their brains.
The form of B12 is important: firstly, the nervous system needs methyl & adenosyl – & if you can’t make those efficiently from your food or supps you’d be in trouble. So it’s best to take those forms direct.
Secondly, tablets give you 1% uptake, and sublinguals 5%. So transdermal made by B12oils in Australia is IMO best: it has an 80% uptake.
(I have no affiliation with them.)
John Macgregor says
Good article – nicely covers the waterfront as usual.
I take methyl & adenosyl (the two B12 forms made by the body from hydroxy), & have graduated over time from oral (-1% uptake) to sublingual (~5% uptake & lots of dental caries) to transdermal (80% uptake, so lower dosage, & a perceptible bang for your buck). Knocked over 90% of my chronic fatigue in a couple of months.
I bought it from http://www.b12oils.com/ (with which I have no affiliation).
Lynn A says
Hello all, and thanks for the fantastic information. I am MTHFR compound heterozygous and just now finding out about all of this stuff after having a multitude of B12 and folate deficiency symptoms my whole life. I read here that some people have a transcobalamin deficiency and therefore cannot get the B12 into the cells, but there was no followup to that. How does one know if they have a transcobalamin deficiency, and what can be done about it if it exists? Assuming transcobalamin is adequate, if one still have low intracellular B12, what is the best way to increase it? One comment said lithium can help, but no further information about dosing or brand/form was given. Thanks in advance!
penny says
Do you have any documentation on the levels from Europe/Japan being 500 is what they call a deficiencie? I have been told this is a myth
Stephen says
http://www.mthfrsupport.com.au/vitamin-b12-reference-range-level-set-low/
Kasey says
It’s a big fat lie.
I live in Belgium. Our lab range normals can be lower than the US 😀 If 200 is the lower cut off, I’ve been at labs where the cut off is 190, 180 even. I can upload my lab results as documentation, if you want 😀
From what I’ve heard, The Netherlands is just as bad, and the doctors there are even worse than here. UK ranges are just as bad as the US.
My very expensive private lab has the lower lab range cut off at 300 and they’re considered extremely progressive or the lab only quacks use.
Starlena Lewis says
I’m not that bad but to have to live with it, very uncomfortable and poor health. Money would be GREAT. About 11yrs worth.SMHHHHHH. But on the other hand I’m so happy to know REALLY.???????
[email protected] says
I have normal b12 levels but low iron and ferritin ….any suggestions?
Tom says
I was diagnosed with slight B12 deficiency and started taking a B complex vitamin on a friend’s recommendation. I do feel calmer and more energetic, but I have become hungry all the time, I want to eat constantly. I am already overweight and don’t want to gain even more. Has anyone else experienced this? Will this level out over time and stop? I really don’t know what to do.
Stephen says
I eat a lot too and before a year ago I had a bad habit of consuming a lot of foods high in sugar such as pepsi/coke, icecreams, biscuits, chocolates. I’ve since cut them out and replaced them with natural fruits, 70% dark choc, 7g sugar content muesli bars, fruit yogurts. My weight has dropped, not to the optimal level but better than a year ago.
Stephen says
Eating a lot of nuts too. More than supposed to but I want to avoid high content sugary foods. I’m also on Lexapro 30mg so that could be increasing my apetite too.
ellen says
Hi
I have a really bad b12 deficiency (found out im March this year, although I had been taking b12 tablets for a long time). At first I just got 1 injection a week and it didn’t help – the results got worse! – and now I am getting 4 injections a week. I cannot say that since the injections I want to eat more.
Wishing you all the peace of the night (it’s 20:30 in Germany and I am exhausted – you know why;))
Jim says
I am a 46 yr old Male, 5’10” 230lbs
I just got this result back from a blood test, should I look to get my number higher?
Component Standard Range Your Value
Vitamin B12 200 – 1100 PG/ML 414 PG/ML
Mindy says
I have been a vegetarian for about 3 and a half years now. Past month I have been having sudden chest pain, shaking, dizziness and symptoms that mimic a panic attack or anxiety. And there’s nothing I’m stressed about it just comes on for no reasons. Olus I’m always tired. I’m starting to think it’s because I’m not getting enough vitamins, and really no B12 at all.
Will taking a multivitamin (something I don’t do) with an extra dose of B12 be enough?
I’m 42 year old female.
JonGrant says
Most multi’s contain the form of B12 called cyanocobalamin, this is a synthetic form, and your body needs to convert it to the methyl form in order to use it. Some people aren’t so good at converting this B12, so look for a multi or B-complex that contains the methyl forms of B12 and folate. Or you can also just purchase methyl B12 caplets, and if you are deficient, you may want about 5mg per day for a while to get your B12 stores topped up. B12 is stored in the liver, and this is why you may get away with a low B12 diet for several years before you have problems.
Molly says
Have you considered mineral deficiencies? Particularly potassium, magnesium, and possibly zinc? I wouldn’t know about you in particular, but sometimes heart issues are related to these.
Fatigue can be related to mineral deficiency as well, but often it’s B12 deficiency and can also be either too much iron (hemochromatosis) or not enough, or some combination of the above.
Ava says
Go vegan not vegetarian because dairy and eggs are cruel af and horrible for you. Take a b12 supplement, exercise, hydrate, carb up on some whole plant foods
Gerald Landry says
Ava, before refrigeration dairy cheeses, yogurts, kefir etc could be stored for long periods. In colder climates where a plant based diet can only be secured in warm months and harvested near the end of the season, meats and dairy sustained humanity for thousands of years before the recent creation of CAFO, Confined Animal Factory Operations.
Hay is put up for winter months when animals cannot graze in their pastures. The Sunshine, Rainfall, Grassland Cycle is a renewable resource which has proven to be sustainable for centuries. Food Miles and Full Cycle Costs should be calculated in any food system.
Sub-marginal land has nourished ruminants foraging grasses and weeds. Their by-products of fibre, dairy, meat and hides all cater to a value added commodity which is renewable. Substitutes for dairy have ingredients shipped from around the planet all adding to the excess of Co2. Ava, what is your opinion on field critter kill from mono cropping grains, seeds and beans for a vegan diet?
Emily Aussem says
What is your opinion on the massive destruction of forests and wildlife habitat to grow soy in order to feed the billions of farm animals we mass-breed? What is your opinion on all that wasted water, energy, and land to sustain their sad lives, rather than the lives of our own people? Soon, there simply won’t be enough room and resources on earth for all these animals- humans, cows, and wildlife. Somebody is going to have to go. I vote the farm-animals. We have to stop breeding and eating them. It has become cruel and destructive for everyone.
Neeraj says
Hi Mindy,
I’ve been experiencing exactly the same symptoms for past week or so. Awaiting my test results. How’s your condition now? Did it get better?
thanks,
Neeraj.
Stephen says
Also look into magnesium. Deficiency in magnesium can also result in some of the same symptoms. https://www.psychologytoday.com/blog/evolutionary-psychiatry/201106/magnesium-and-the-brain-the-original-chill-pill
Anja says
I’ve been diagnosed with Crohn’s disease a little over a year ago…I’ve had low vitamin b12 levels (115pmol/l) in december and anemia that wer treated with a shot and weekly usage of nasal spray and an iron infusion….the b12 levels went up to 183 in February…in April my doctor wanted to see if I could keep the levels up naturally and took me off the b12…I had a blood test last week and now the levels are at 99pmol/l…so she gave me an injection and put me back on the spray…
Anyhow I’ve been reading about all the symptoms and how other people experience it and frankly I don’t think I have any at all…I mean I’m tired after work which is normal I guess (I’m in hotel industry and am on my feet all day) and do need a lot of sleep (9hours) but I do a lot of sports every day and don’t seem to be particular exhausted…
I wonder if that’s normal (not that I’m complaining 🙂 ) I do have to say that when I went for a run this morning (usually about 5-7k) I did get a bit dizzy towards the end..but since that’s rarely ever happened I just figured it was the heat (lesson learned….no running after 9am in summer I guess)
Does anyone else have the same kind of experience?
Stephen says
Do you mind sharing your age? I’m wondering if your symptoms will change as you age. I don’t know if I was deficient in Vitamin B12 and other Bs in my earlier years but I know many symptoms that I have when low have worsened/changed as I have gotten older. So now I do treat myself with a natural multiB supplement and an extra natural B12 most mornings.
In Japan and some European countries the minimum level for B12 is around 500…
http://www.health-boundaries.com/what-is-a-healthy-b12-level/
Anja says
Not at all, I’m 31. I was thinking about it some more yesterday and I don’t think I’m just being ignorant to any symptoms, but I definitely don’t have anything…or at least nothing that would be obvious enough
Amit Patnaik says
B12 is “ONLY” in animal produce is not true –
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4042564/
Eugenia Loli says
This study is very misleading. The B12 found in these plants, is INORGANIC. It’s a yet different form, and it is toxic to our body. Nothing to do with the bioavailable meat B12 form.
Sonia says
I have all the symptoms of b12 deficiency,I have been taking metformin for years and is known to cause b12 deficiency but every time because the levels are so low in this country I am told my bloods are normal and I know it wrong.I know how I feel and the symptoms,I am not paranoid,Drs wont listen,what can I do now to convince them,so many dont even realise their symptoms are a cause of this
Stephen says
In Japan apparently they lifted the minimum level in the reference range for B12 to around 500 pmol. You might want to consider taking matters into your own hands and treat yourself with the help of a physician.
http://www.mthfrsupport.com.au/vitamin-b12-reference-range-level-set-low/
According to Australia’s reference range I’m within range, according to Japan I’m below. After treating myself with this product once or twice a day I have recovered so much cognitive function, memory, mood, assertiveness, confusion, anxiety, depression, concentration, busy (racing) mind, irritable, agitated, anger. It is just amazing this product. It has all the natural forms of vitamin B as some people cannot metabolise well or much at all the synthetic forms.
Let us know how you progress in a few weeks. I noticed immediate benefits after first day! And I’m improving more and more each day. Its like I am gaining 20 years in some aspects of mental functioning. A renewed me.
https://www.thorne.com/products/dp/basic-b-complex
Ann Bailey says
Hi: I have been treating this issue “I believe” for many years. I had no idea I had a problem until recently. I would go to the Dr. barely able to move my body and complain I was beyond fatigued, or my hands were tingling or numb. I was soooo tired. I would have a blood test and it would show normal. THen the last one showed a B12 deficiency I had 97 instead of the not very effective 138 that is defined as the low.
It bothers me greatly that I could have had help over the last 20 years if the blood test had requested a B12 level or if I had somehow known. My Mom died of cancer, but she also had a B12 deficiency. Is it genetic in my case. Should I be telling my kids to get tested. How does one know. I went to a naturopath and she also said that in most modern medicine the low acceptable is 500. That scared me even more. Have I done damage to myself over the years because I didnt know what I was dealing withÉ
I just dont know what the average person should be doing.
I think it should be checked better and more accurately.
Ann
Stephen says
Hi Ann, I understand your worry and concern. I think you can heal yourself by taking the appropriate steps now. We cannot right our wrong past mistakes, they are left in the past. But we can take action now that is beneficial for us. None of us make perfect decisions during our entire lives.
I hope you draw some positiveness from this video where a Dr. treated herself with a healthy diet to cure herself, it is not about B12 per say but shows the importance of good nutrition.
Ann Bailey says
Thanks Stephen: I have an exceptionally healthy diet, so I knew that was not the issue. I have a naturopath now that has been excellent in tracking the B12 issue and it is definitely the culprit.
Alex Merchant says
I have suffered from mysterious fatigue for 20 years as well. About a year ago, I went mostly vegan, and this summer my fatigue started to get really bad. I’m always tired, that’s nothing new, but I started getting anxiety/palpitations, and waking up with my arms numb and tingly. Very concerned…
I was aware of the B12 vegan problem, so I started taking methyl B12, and my symptoms greatly diminished in about 1-2wks. Also, no more deep afternoon naps, nor waking in the morning feeling like I’ve been drugged.
I did strict paleo for several years, eating supposedly high B12 animal products for every meal, but I never got rid of my fatigue.
I’m hoping B12 is at least a piece of this 20 year puzzle I’ve been hopeless to solve.
Keith says
I am a type 2 diabetic who has just been diagnosed with a B12 deficiency. He has suggested I take a B12 supplement daily for 1 month to be followed by a blood test. My advice to you is to change your doctor, and in the meantime go to your health store and buy a supply of supplements. Take one a day for a month and see if your symptoms change. But do seek out a doctor who will listen to their patients. Don’t leave it to chance!
santosh says
get a blood sample tested and show them the result for b12 deficiency
JonGrant says
I was told the same thing as you, that my B12 was fine. I found out though that taking methyl B12 helps my energy level significantly. I started taking 5mg per day, and later switched to a B-complex containing the methyl forms of both B12 and folate, and feel even better.
Lori says
Have the Dr. check your Vitamin D level.
Gerald Landry says
Sonia, metaformin use can also onset metabolic acidosis or lactic acidosis. A food conflict by drinking/eating cow dairy products can/may be alleviated by switching to goat or sheep dairy products. A personal joke is to do a cow dairy exorcism for about six weeks and note if any symptoms vanish.
I did and was off my puffers within weeks (the lactic acid may inflame the delicate air sacs in the lungs) and Fibromyalgia free. I did not eat/drink any dairy for 1.5 years, than at the suggestion of my Naturopath tried goat and sheep dairy products with no noticeable adverse effects.
Martin Winstone says
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Vicki says
Has anyone had Joint pain taking the B-12?..
I know it is supposed to help with joint pain, but I have started having severe pain in my wrist and shoulders since starting the B-12 shots…
Renee says
Yes, Vicki I had my first injection yesterday morning. I went to work but by the time I got home I had abdominal pain and severe joint pain. I have been trying to find out how long this will last and if this will always be the reaction I get.
Carol Hooper says
I had my first injection this week and my arms ,shoulders and legs have been in pain . I am having 6 injections over this next two weeks and i cant wait to have more energy . I have to keep lying down as i feel so lathargic . Do u know when i will feel the benefit ?
JonGrant says
Let me start out by saying that I am not a doctor. You should feel positive effects from a B12 injection almost immediately (within minutes). And I’ve just got to wonder why doctors prescribe B12 injections; oral B12 (preferably in methyl form if you can tolerate it) works just fine and costs much less than injections. Someone is paying after all (even if it isn’t you).
hoogie says
interesting article … I was diagnosed with a low b12 level of 22 about a year ago … I got pretty sick like most folks who suffer from low levels, couldn’t stand, couldn’t walk, numb legs/feet, numb arms/hands, couldn’t eat and lost weight, lethargic and generally tired, really bad brain fogs, actually forgot which toothbrush was mine and also forgot my name … doctor was pretty shocked at the results … have monthly b12 shots [methyl] and have improved immensely … still have the odd down day, but largely feeling pretty good now … i’m a fairly active 55yo male
I found using oral sprays and sub-lingual tablets actually seemed to make the brain fogs worse during the early days when I tried to supplement the injections … would this be because of the different type of b12 or just the timing was wrong?
Joyce says
My sister is a gastric bypass patient (15 years) and is now suffering from severe peripheral neuropathy. She can hardly walk and is pretty much disabled. I keep telling the doctors she needs B12 as her body doesn’t absorb it. Finally after 9 months and 5 doctors, one of them finally diagnosed her with pernicious anemia. He says she should take B12 but didn’t order the injectable! How much should she take and for how long? I pray someone out there knows.
Stephen says
I started taking 2000mcg per day (1000mcg after waking and 1000mcd near bedtime) maybe 3 weeks ago and noticed cognitive improvements, improved energy, reduced anxiety and depression, improved mental focus, reduced irritability and anger. I read several articles saying to take somewhere around 1000-2000mcg per day so I decided on 2000mcg since my symptoms were severe and impacting my emotional and cognitive state that it was impacting my personal life and work.
http://www.vega-licious.com/how-much-vitamin-b12-to-take/
Molly says
I take all of my B12 after breakfast. I take 400mcg of folate and 4000mcg of methylcobalamin and 4000mcg of adenosylcobalamin. The folate I just swallow, the 2 forms of B12 I take as sublingual tablets; I place them along my gum line on both sides of my lower jaw between my gums and cheek, and let them dissolve until they are gone, it takes a little over an hour. This works for me. The methylB12 I use is Enzymatic Therapy B12 Infusion off Amazon.
Conor says
Molly – which adenosyl b12 do you use?
Vicki says
Molly could you explain to me why you take two types of B-12. And what does the folate do?
I take methylcobalmin lozenges and Methy B-12 shots, But if I can improve on that I would like too
Molly says
I use Dibencozide, by Source Naturals. I read that adenosylcobalamin is preferred by the mitochondria, so I use both forms. I use half a tablet per day because the dose is nice and high at 8.6mg.
Just so you know, I am still working on my low B12 issues, they are not fully resolved. I hope they will be, but I don’t know; they are at least improved so it’s possible that I need more than I am taking.
Molly says
Ack, I forgot to add this, it’s from another commenter here, John Macgregor:
“…methyl & adenosyl B12 are crucial to the methylation system, but often can’t work well without cofactors such as each other, & methylfolate & carnitine (which crank up ATP).”
Adenosylcobalamin Catalyzes Nitrous Oxide
http://www.hy-ls.org/index.php/hyls/article/download/92/92-325-1-PB.pdf
Another good reason to use adoB12 with (simultaneously) methylB12.
Best wishes to all in their healing journey.
Kathy from Maine says
Great article! As I was reading, a pop-up displayed offering a free eBook on Vitamin B12 deficiency. I clicked on it, but got the message the page wouldn’t display. I’ve tried several times, even shutting down my computer and starting it again, and I get the same thing. Is the link broken?
Asif Khan says
Hello Team,.
I have bee facing extreme fatigue and great pain in my legs and thigh since three months but this problem was started 2 years back and I didn’t realize this would be very dangerous.
A month back I went to the doctor and after doing whole blood check we found B12 (104) and D3 (19) deficiency . I am taking methylcobalamin 1500mcg with mulivitamins since one month but getting no benefits.
I have few questions from the experts:
-Should I take injection instead of tablet as I am having IBS that may be causing medicine to not go in to the blood strem ?
-How much time would it take to recover extreme pain from legs and thigh ?
-Is there any nerve damage in my case as I am afraid after reading information about b12 deficency ?
Regards,
Asif Khan
–
Kymm Gardner says
1500 mcg is nothing when you are deficient. If unable to get shots you should try megadosing with 5,000 mcg SUBLINGUAL tablets. When I first started self treating, I started at 60 tablets a day which matches two shots a week-loading doses are necessary to start out. After a month or so, I brought that dosage down to 30 a day, after another month or so down to 15, and I am now taking 6-7 per day which if you put it on a conversion chart, matches a shot a month. I went from extreme fatigue, brain fog/dementia/ neuropathy etc, etc. to being extremely healthy and feeling fantastic. The difference is incredible. The first day that I figured out what to do, after getting no help from doctors, I dissolved 5 sublingual (under the tongue) tablets at 5,000 mcg every hour, and the fifth hour (25 tablets later) I stood straight up, woke up, felt normal-no brain fog, pain or headaches-for the first time in months, I felt like me again…Hope this helps you…
kyleigh bartlett says
Hi Kymm,
I have 10,000 mcg methyl b12 coming in today to start taking, I am beyond excited, hoping that I will have the same results as many of you. I am not sure how many tablets to take in the beginning though…were you taking 60 of the 5,000 mcg?
Kymm Gardner says
Hi, yes I was taking 60 at 5,000 mcg, sublingually: 5 under my tongue every hour for 12 hours a day. You may want to start lower at first and increase as needed. I was pretty bad off at the time, I’m not sure what your symptoms are/how deficient you are. I could barely stand, stay awake, etc., etc. Maybe try 2 or 3 per hour at first and see how you feel by end of day. You have to play with the dosage to see what works for you. Keep me posted if you will. I sure hope this helps. If you are deficient, it certainly should!
Biochemist Clinical says
PLEASE PLEASE PLEASE DO NOT ‘MEGADOSE’ on vitamin B12. If you have a balanced diet you will be sufficient for vitamin b12 unless you have a malabsoprtion disease such as ceoliacs.
You can overdose on vitamin B12. Also keep in mind you have stores of B12 that will last you three years as it is essential for life…you wouldn’t last very long if you were completely deficient as your blood cells REQUIRE it to form and survive properly.
THIS IS A FAD ARTICLE AND DOES NOT UPHOLD ANY SCIENTIFIC FACTS ON VITAMIN B12.
FYI: For older children and adults, the ideal vitamin B12 dosage should be 2.4 mcg DAILY.
Research Chemist 1313 says
The vitamin B12 is water soluble. Excess is excreted in urine. This article is accurate. Biochemist Clinical is not accurate.
Lioness says
I agree! ANY vitamin that is water soluble is excreted when we pee!
JonGrant says
B12 is also stored in the liver, and if you are not replete, most of the B12 will be stored there. A bit different than most B vitamins.
Gerald Landry says
Biochemist Clinical, why are you ignoring the fact that Nitrous oxide anaesthesia can impair cellular absorption of b12? Staff in OR and Dentistry inhaling vagabond nitrous can/may suffer from impaired cellular absorption. Patients who have had multiple surgeries, births, dental work OR recreational users may/can suffer impairment.
Cathy says
Being b12defient were you losing weight and I’d do, have you gained your weight back?
Jon Grant says
I found I was deficient for B12, and I started taking 5mg twice per day for a month, and now I take 1mg. I also started taking D3 since I was deficient for that vitamin as well; I take 5,000iu per day. Both levels are now OK (though it took a while for D to get to a good level).
Jon Grant says
I should have said that I was taking methyl B12.
Andrea says
Magnesium helps me significantly with my joint pain. When I don’t take it, I can really tell. Magnesium Citrate is most easily absorbed, but be care with your IBS as it can have laxative effects.
Morning Sun Yellow Pony says
If you take the Magnesium L-Threonate, it is the most absorbable and does not affect the IBS at all. Mercola.com carries it.
Gerald Landry says
Andrea: B12 helped alleviate my hip and shoulder pain. Apparently the Bursa sacs are dependant on good b12 levels. I thought I was headed for hip replacement and am now pain free. It was even hard to turn in bed or get out of bed because of the hip and opposite shoulder acting up.
I carry magnesium to relieve leg cramping and chest pain which was used in ER pre the introduction of Nitro. It is also used by IV for severe asthma attacks. It is a muscle relaxant. My leg cramping has diminished greatly since i started supplementing with Ribose recently.
Tess says
I have been told i must take an oral spray under the tongue as I’m not absorbing b12 with diet so taking a vitamin tablet is a waste and i found some good oral b12 sprays on iherb and am waiting for my order.
JonGrant says
B12 is a large molecule, and I doubt it’s possible to absorb it sublingually. You probably end up just absorbing it through the digestive tract. With high dose oral forms, enough B12 gets absorbed through your digestive tract via diffusion even if your stomach doesn’t produce enough acid or intrinsic factor. For this to work though, you need to use the methyl form (disclaimer: I am not a doctor).
Molly says
Yes, it is a large molecule, but the people on the Phoenixrising site would heartily disagree with you. Take a look, not all sublingual supplements work, but Freddd in particular has tested many out and found some that work very well.
http://phoenixrising.me/
CLeo says
It’s all going to go down to your stomach if it isn’t absorbed sublingually anyway (and it works that way just fine).
Jill says
Why are doctors reluctant to treat vitamin b12 deficiency? I have celiac disease and even though I follow a strict GF diet I have had consistently low vitamin b12, D and iron levels. My b12 was recently at 70 and vitamin d was at 48 I was getting heart palpitations and felt awful. When I asked the doctor if it could be my low vitamin levels he said no and told me I just must be stressed. I said I did. It feel a great deal of stress. He sent me for an EKG, stress test, and several other tests but was so dismissive of something that is simple and inexpensive to treat. B12 has also been something that I have responded well to in the past. I then was able to get a few B12 injections and things have improved significantly. I just don’t understand why they don’t treat something so simple.
Andrea says
Find a different doctor. My doctor was the one who suggested I have my B12 and vitamin D levels checked.
Gerald Landry says
Jill, the American Medical Association (in the past, not sure if the teaching has changed) labelled Vitamin Therapy as Medical Heresy. Dr. Russel Blaylock who treated babies suffering Infantile Apnea (often resulting in crib death) with mega doses of B1 was threatened to have his medical license revoked. That motivated the beginning of the Integrative Medicine Group.
Ref: [PDF]
Is There a Conspiracy? – Orthomolecular.org
orthomolecular.org/library/jom/1987/pdf/1987-v02n03-p158.pdf
by A Hoffer – Related articles
root out these heretics because they and their principles have … activity of the American Medical Association in trying to destroy … critiques of vitamin therapy appeared. They were ….. They were incensed by a report I had published called.
Chris VanWyck – ROCKEFELLER AMA MEDICAL TYRANNY FOR …
https://www.facebook.com/chris.vanwyck.3/videos/968874816470569/?fallback=1
Blaylock has called the American medical system ‘collectivist’ and has …. naturopathy, vitamin therapy, alternative cancer and arthritis treatments and even books … Beasley’s Betrayal of Health, Mendelsohn’s Confessions of a Medical Heretic, …
IS MOST DISEASE CAUSED BY THE MEDICAL SYSTEM
http://www.health-science-spirit.com/medicaldisease.html
Diseases caused by medical treatment are called iatrogenic diseases. …. Dr Weston Price (19), a former Director of Research for the American Dental Association, observed that …. by greatly increasing our levels of vitamin D with suitable foods, supplements, and …. (2) Mendelsohn, R.S. Confessions of a Medical Heretic.
Di says
I suffered terrible dysphagia (difficulty swallowing) for two years and also bursitis (inflammation of my hip) for seven years, after stumbling on an old B12 protocol devised by a doctor in the 1950’s I eventually managed to convince my doctor to give me an injection. The next day I could swallow normally for the first time in two years and my hip got a little better, I was not able to convince my doctor to give me more than a second shot, so I had to come up with a new plan. The information I found here on Chris’ site was phenomenal and as a result of the complete resolution of both of these health issues I started blogging in the hope that others with dysphagia and/or bursitis could find this awesome information and heal themselves too. Chris is right sublingual methylated B12 is the way forward and much better than the injections anyway, if anyone had told me before that a simple deficiency like B12 could have the impact it had on my life and that I could completely get my life back through just adding this mighty supplement, I would have thought them mad. But its true! All the best to others on this journey who have found Chris and his awesome information.
Gerald Landry says
Di, Thank you for mentioning the difficulty swallowing. That was happening to me lately which was worrisome as i was exposed to Neurotoxins. I also thought i was headed for a hip replacement with shoulder symptoms also. My brother suggested i increase my b12 intake as the Bursa sacs are dependant on b12, and all the pains issues vanished in my hip and shoulder. Will monitor for the swallowing issue.
May says
I was diagnosed with paranoid delusion , depression ocd and was on antiphyscotic. Seeing this my doctor suggested for b12 and d Vitamin test serum. Which turned out to be 105 and 10 respectively. It took nearly 20 years for me to figure out the problem. In the year 2014 I started taking b12 and d supplements which almost success rate of 99%. Now my b12. Level is 1850 and d is sufficient. This makes me very happy and I am pink in my health.
Andrea says
Do you still require the meds?
May says
I take b12 every 15 days once and d every month
May says
Maintenance dose
JMac says
Hi there, what kind of D is best to take?
May says
D3
Bonnie says
I have to say something here about vitamin D. I too fell for the fallacy that we all need vitamin D. Please go to http://www.thepeopleschemist.com and read what is there about vitamin D and other fallacies. I think this is important. Taking supplements that have been popularized and touted as absolutely necessary might be very dangerous. Educate yourself is the best policy, I think.
Angela says
Hi, my husband has the same as May described, but he has them every two weeks. He had bariatric surgery long time ago, but discontinued to take big vitamins, prescribed for that. He has B12 injection every month. So is that a possibility, that he is normal two weeks after the injection, and kind of confused, euphoric, irritable, the other two weeks, when B12 is less in his blood. Please, what do you think? We are going through such circles for two years. I was thinking that it was Gabapentin, he had for pain in the back, he discontinued, but his symptom returned in two weeks, I thought adverse effect of Oxycodone, also I made him stop it, but it did not work. Today I found this discussion and I think maybe my husband needs more B12, since he can absorb it? His symptoms are euphoric, too full of energy, sometimes angry, paranoid, psychotic, annoying, he has red eyes, scratch himself all the time, can’t sleep in the night, cough a lot only on these days, eats too much, but in three days he will fall asleep and almost will not eat . I don’t know what to do, please help me!
Stephen says
I feel for your husband Angela. He is struggling big time and it is also very difficult for you too. I have read about difficulties for people after the surgery to absorb nutrition so his issue may not be just B12. Here is a medical article concerning B12 deficiency after bariatric surgery https://www.ncbi.nlm.nih.gov/pubmed/24091055
I wonder though he may be deficient in other nutrients too. I think a physician that can take a holistic view of his health is advisable. Depending on his age maybe but I’m no expert he might need many nutrients such as https://www.thorne.com/products/dp/al-s-formula-reg
I like Thorne’s products because they typically use natural forms of nutrients rather than synthetic which may be better for absorption and more gentle on his body.
John Macgregor says
If he wanted to get a constant dosing of B12, with a steadier delivery, and near-maximum uptake, he could try the transdermal B12 oils developed in Australia: http://www.b12oils.com/
(I am a customer, but have no financial interest in the company.)
Sublingual tablets yield about 5% uptake, oral (swallowed) 1% – but the transdermal oils yield about 80%.
Bonnie says
How do you know this to be really true?
Sanjay says
Hi,
I am 28 years old and I’ve been a vegetarian since the past 22 years.
The symptoms are pretty much similar to what is covered in the above article.
My current d3 level is 4.83 ng/mL and b12 level is 134 pg/m
The physician has prescribed 3 injections of D3 and B12 every 10 days for a month. I have taken 2 already but dont see much improvement.
I am ok turning into a non-veg and plan to start with Tuna fish which has 2.5μg of B12 normal daily intake being 2.4μg
I am keen to know how much time would it take for recovery with the activation of Tuna in my daily diet?
Patrick says
Diet has little to do with it, even though he said vegetarians are most at risk. If less than 1% of the population follow a vegan diet, then why are 40% are sub-optimal levels? Again, best way to get your b12 is through supplementation or b12 shots. I found Jarrow methyl b12, 1000 mcg online for very cheap.
Same is true for vitamin D, unless you live in a warm, sunny climate. Still, how well your body absorbs it is another issue. Always test annually for these and supplement if needed.
Kymm Gardner says
A suggestion- find out if the injection of B12 you are getting is the methylcoblin form, rather than the cheaper, synthetic cyanocobalamin form. Your body has to covert cyano into the methyl form. Some people, like me can’t metabolize the cyanocobalamin form. If your doctor is using cyan, ask if he will switch to the methylcobalamin form…
Stephen says
Kymm how do you know if your body cannot metabolise the synthetic form?
Kymm Gardner says
You ask your Dr. to switch you and see if there are almost immediate noticeable improvements. That’s the easy, quick way. Apparently thete are also tests to check, but I forgot what they are, and good luck talking doctors into doing specific tests anyway, at least that’s an issue where I live!
Julie says
I finally convinced my dads doctor to give him some B12 jabs, 5 injections over 2 weeks then once every three months.
I asked dad to check which B12 they were using in the injection, the nurse had no idea!!! She apparently looked on her screen and couldn’t tell which one it was!! Is this possible!??
He has had no improvement after the first 3 injections yet, suffering with deep depression, anxiety, insomnia and panic so having to do everything immediately to get it done and out of the way (even eating a meal in a pub!)
Should he have seen any improvement yet with a blood result of 400 before the injections were started or should I try to get another B12 type injected instead to try to help
Stephen says
Could it be something else troubling him such as sleep apnea? I was diagnosed with mild sleep apnea and after using a CPAP machine some of the symptoms you mentioned improved. Although I’m still not close enough to 100% so I went and saw an Integrative GP today to dig deeper…
Stephen says
Could also be magnesium deficiency. http://umm.edu/health/medical/altmed/supplement/magnesium
Laura Burrow says
Can you take too much B12? If so how much is too much?
Di says
I have been taking 5000mcg per day, and firemen exposed to toxic smoke take this amount twice in a 20 minute period with no ill effects. There are no reported cases of over dose of B12.
AnnF says
Sometime, last year, I think, I asked for help because I had mucous that would trap food. Someone said his wife suffered from this, and was helped by apple cider vinegar. It did help, but I could not stick with it. I then had a very embarrassing episode at a family function, after which, I mentioned the food getting stuck to another doctor, and he tested me for thyroid problems. I was HYPERTHYROID! Since taking my thyroid meds, I am not nearly as mucousy, and food doesn’t fight with me because I want it to stay in, but it wants out!
I couldn’t find the original entry here, but I wanted to give that guy and his wife, and anyone else with that problem a heads up — have your thyroid checked.
Laura says
Hi there,
I have been having this mucous issue for almost 2 years. My TSH has been around .4 but my doctors say it is fine because it’s at low end of range, even though I have all hyperthyroid symptoms. What was your TSH? Can you tell me which medication you are taking for this so that I can push the issue with them or a new doctor and hopefully get some relief? Any other advice would be appreciated. Thank you!!
Jennifer says
Laura,
Please check out this website all about Thyroid issues. It will help determining your lab results and why doctors say you’re normal when you’re not.
http://www.stopthethyroidmadness.com
Jon Grant says
Have your doctor test free T3 if you are concerned about hyperthyroid. FT3 is the active hormone.
Wanda says
Hi, this sounds crazy but I have been on synthroid since having my thyroid removed. I have felt terrible for years and told my doctor the meds must not be working but like you I was told the test showed my levels were good!
My condition declined to the point that I couldn’t walk, had trouble breathing and didn’t have the energy to get out of bed and my memory was pathetic. I was so worn down and weak that I ended up in bed for at least 18 hours a day.
Finally a new doctor checked my B12 because I had symptoms of Rheumatoid Arthritis, heart problems and nerve damage.
B12 anemia was the cause of everything! Get your levels checked……feel better!
Love & Unstoppable Confident Energy says
Wanda, I am beyond Happy for you!
Love & Unstoppable Confident Energy Each & All!
Sem says
Hi!
Does it actually work if you take ONLY Methylcobalamin to treat b12 deficiency or do you also need other forms like adenosylcobalamin (or can Methylcobalamin get converted into adenosylcobalamin)?
And if you corrected high MMA and homocystein via Methylcobalamin is then a potential adenosylcobalamin deficiency ruled out?
thank you
Faizel says
Hi Chris,
I was identified with GERD (Grade A) in August 2015. My Gastro prescribed PPI for 8 weeks but I didn’t take the same. Thanks to your articles !!
Been on Ayurvedic medication since then. The heartburn has been under control but I lost almost 14 kg in last 8 months. in fact last 6 weeks I am experiencing high levels of fatigue. I checked out the Vitamin D and B12. My results shows Vitamin D levels as 19 and B12 as 268. The endocrinologist who checked my results told me to take B12 shots and Vitamin D3 (60000 IU every week). I heard Vitamin D can aggravate the heart burn. Please advise if I can take B12 and vitamin D shots same week? will it aggravate the reflux.
Thanks for your time.
AnnF says
Hi Faizel,
Have you had your Thyroid checked? You could have an overactive thyroid.
Faizel says
Hi Ann,
Thanks for the reply.
In fact my gastroenterologist has done a Serum TSH (ECLIA) to figure out symptoms of a thyroid disorder. The result was normal (1.580 micIU/mLa).
In fact later my endocrinologist has done a Plasma Cortisol, which looks like within normal range (442 nmo1/L).
AnnF says
Also, was Heartburn your GERD complaint to begin with, or was it something else? For example, I had a cough, and without testing anything, the doctor prescribed 2 kinds of acid reducers. In a way it was good, because it led me to discover my pre-existing B12 deficiency, but the lack of testing was ridiculous, and the reason for my cough was the Amlodipine I was taking for my high blood pressure. I am very suspicious of all these GERD pills they hand out like candy now.
FYI, if I can, any pills that gives me heartburn, I take with milk. D3 used to make me feel terrible until I started taking Vitafusion gummies. My practically negative D level is now excellent.
Molly says
Hello Faizel,
I take daily: 10,000IU vitamin D3 along with 6mg (that’s 6,000mcg) B12 tablets dissolved over an hour along the gum line – no problems at all for me, but I don’t have any heartburn issues.
Sometimes the best we can do is experiment and find out what works for us after learning all that we can about our issue(s). Best of luck.
Erika Madson says
Might want to check your conversion. 6mg IS NOT 6,000mcg.
Daniel says
Uh, yes it is.
Molly says
Thanks Daniel, I didn’t see this until just now.
Erika, here’s the math:
1mg = 1,000mcg = 1,000µg(for physicists and chemists)
Therefore, 6mg = 6,000mcg.
It is correct, but I’m glad you checked it for me, even scientists and mathematicians make mistakes, especially with brain fog!
Ian says
Yes, vegetarians suffer from decreased cognitive ability. Albert Einstein, Nikola Tesla, Leonardo Da Vinci, Socrates were obviously all suffering from decreased mental capacity. This article is anti-vegetarian propaganda. Granted we need B-12 more than average, there are many other sources it can be obtained from. I feel sorry for anyone who allows themselves to become fearful based on this mis-information.
Brian says
First of all, vegetarianism is hardly the focus of this article. “anti-vegetarian propaganda”???
Secondly, if you are so sensitive, why are you on Chris Kresser’s website?
Katelin says
The author actually never mentions in his article that one should not be vegetarian. All he says is that if you are, then you should supplement with B12. They only thing he refuted is the myth that you can get it from plant foods. So if you have any concern get tested, as he recommends, and see if you are deficient. If you’re vegetarian and you’re not deficient then fine but if you are then supplement. How is this anti-vegetarian?
Joseph says
I have been vegan for the last three years. Seemingly, very healthy and eating all the right things. However, I have managed to become severely deficient in B12. Although veganism is not the only cause by a long shot – I know it has not helped my condition and made it much worse. I have unknowingly become more tired, weak and worn out over the last few years. I thought I had ME. Been to doctor a few times and they tested me but all came back normal and they kept telling me to take antidressants as they thought it was all symptoms of depression. I knew it wasn’t, but finally took action to get some private bloodwork done to find that my B12 level was 140! No wonder I have felt so rubbish over the last few years. Wish I had found out sooner as I thought I was going to be like this for the rest of my life. My GP for some reason decides not to test for this. I am now waiting to see how my body responds to the high dose B12 I am now taking.
AnnF says
Hi Joseph,
What’s the dose of B12 you are now taking? What form is it in. There are guidelines for supplementation doctors are now supposed to follow in the US and the UK if a patient even just shows signs of B12 deficiency; however, most of them never even heard of B12, kit seems. The Pernicious Anemia Society probably have links. You could then print them out to show your doctor.
Cheryl says
Yes. I agree with you Ian.
AnnF says
Ian,
Everyone needs more B12 than average. Though there are B12 vitamins that are made from non-animal sources, there are hardly many sources of B12. If you are privy to such sources, how about being specific.
Eat meat or don’t, but don’t make vague statements. Being B12 deficient has really taken a toll on me. I did not know I was deficient until everything started going…I could not think, remember anything, walk without sever pain, or see straight. I could not walk without bumping into walls and felt dizzy all the time. Now I have uncontrolled blood pressure, asthma and a hyperactive thyroid, and I wonder if it is because of being low on B12 for years. It’s real, not propaganda.
Amanda says
I notice from my recent testing that B12 is now being measured in total and ACTIVE form. If my TOTAL B12 is very low but ACTIVe B12c is low-normal, what is that telling me? I’m totally confused but I definitely am suffering from several symptoms of deficiency.
Stephen Trapp says
Red Star nutritional yeast T-6635 is a Vegan source of B12, 1 Tablespoon supplies the adult RDA. I have been Vegan for 11 years, and DO NOT have a deficiency. This makes me wonder about the data presented.
Ana says
It’s great that the nutritional yeast works for you. That may be an excellent choice, and much less expensive, I might add. Yeast, however, can be allergenic for people with mold sensitivities. Also, some people with gut problems are quite sensitive to yeast products. My allergies to mold and yeast came well before the low b12. As healthy as yeast products are for many people, I wouldn’t take a chance. The methyl B12 shots work for me.
Jenn says
Hm, I have to agree with you here. I was intrigued by the info until I read that, which I happen to know is not true. Is it that I am learning new things from this article, or learning fake things?
Please, not trying to be a hard time and correct me if I am wrong, but I believe that the reason animal products have B12, is because they eat grass and soil contaminated with the micro organisms.. So vegans can also get from the same sources, but not already digested once over…
AnnF says
Jenn,
Sorry, humans can’t process the original sources.
AnnF says
Stephen,
The USRDA for B12 would not keep a flea alive. If vegan and yeast work for you, that’s great, but I also find stories all over the place of vegans that had to return to meat for health reasons. For me, I have to take 15,000 mcg just to keep most of my symptoms at bay. The FDA recommends 2.5 mcg.
There are a few B12 supplements, though, that say that they are good for vegans (because of not using animal sources, not just because vegans should supplement B12), so vegans should look around.
ravk says
I am in early 30’s & having B12 deficiency, lots of relief after started taking needles or methylcobalamin supplements. It took 7 years for me to figure out the root cause for daily suffering. From few years I am pushing hardly to fullfil daily activities.The symptoms are crystal clear, pains all over body, fatigue, needles pains, sometimes headaches, mucus filled throat, gut problems. when you woke up & get ready to go work you feel very tired & will push yourself. slowly the day will be better & again feel fatigue from evenings. I feel light headed ,no more body pains feeling lot better now. Symptoms mimic lots of other dangerous diseases which you feel like you have all of them when you google them & ask doctor to do all those tests. All results will get normal as usual at this young age. but still suffering will be there. It seems like a growing problem.
barbara says
Hi you sound like me I to have suffered from b12 deficiency all my life and had injections in the past but I would like to know what the count should be as I have just been to my doctor and she wouldn’t do the blood test as the last time I had a test was last year sometime so I am going to ask her for a print out so I will know if it’s low or not and if it’s only a little bit down it still makes a big difference on how you feel they don’t seem to understand this so please can you help me thank you
Maria says
My 2 year old boy has about 1500 b12 and 56 vit d…I am really worried.Should he eat less meat and more greens?Is too much meat elevating b12 levels?
Lissa says
I was diagnosed with low b12. I started to have vold sensations in my legs, i had nentioned to my gp pteviously that i could become very tired. I have been diagnosed with IBS msny years ago and had two premature borths. Any way i came down with a cold and had balance problems, flushes, sinus, blinding headaches. My b12 was low so im having 2weeks of injections but further tests have indicated that the intrinsic tests have come back normal. My level for b12 is 161 which apparentlyis to low. Im struggling tp go to work, concentrate, im feeling extremely tired, emotional. Really fed up as whatever it is its effecting me and i just dont feel normal. Im worried now that further tests are normal they will not treat the b12. Any advice would be great.
sleepypuss says
I was diagnosed with B12 deficiency in June when I was feeling dizzy and had the tremors. I have come to realise I have a lot of neurological symptoms that can be due to B12 def. I tested negative for the antibodies that affect intrinsic factor so the GP said not classic PA. I was put on the loading doses for 2 weeks then told I will get a blood test at Christmas. I went back as my neuro symptoms were getting worse. I was then offered 2 monthly injections after a further 3 weeks of loading doses. The haematologist told the GP that any symptoms remaining at the end of 3 weeks were not due to PA. My symptoms are still bad and worsen each day but the GP will not give me any frequently than every 2 months. I wrote to the practice manager stating my treatment needed changing and the GP then referred me to the haematologist (still waiting for that appointment). Seen the gastro today and he said my vit D levels were good despite the GP saying they were very low and I need vit D tablets for life. He said my b12 levels (133) were not low enough to produce symptoms. He said my def could be due to Crohns but did not want to do a colonoscopy. I told him to do the calprotectin stool tests and he did agree to that. I also asked for the breath test to check for H pylori but he said there is no link to B12 deficiency. I am worried that I will not be able to do the career I am training for in the future (midwife). I am being fobbed off by every medical professional I see. The lack of knowledge and the refusal to provide adequate treatment scares me. I do not know how to get the right treatment. Occupational health wanted 6 weekly blood tests to keep an eye on my levels and see if working near entonox affects my levels but the GP has refused to do it (despite agreeing at first). I feel if it is left to the heath professionals I could end up disabled.
Sleepypuss says
My podiatrist tested my feet when I visited for a routine check on my plantar fasciitis. She was horrified the GP has not referred me for a spinal check. She said I am unable to detect temperature change on my feet. If it gets worse I am to go back to her as an emergency and she will carry out the tests again and write to my GP.
EILEEN A SMYTHE says
SLEEPYPUSS – Read Could It Be B12 by Sally Pachlok (excerpts on Amazon). Sally also features with her husband in a fantastic You Tube video – Diagnosing and Treating Vitamin B12 Deficiency which will set you on the right path straight away.
finndian says
I’ve struggled with undiagnosed b12 deficiency in the past. I had severe nerve conduction problem for about a year that got progressively worse several years ago. All the doctors I went to couldn’t figure it out despite me telling them I had a history of nerve problems, didn’t eat red meat and was into endurance exercise… all that sweating of course washing out my already meager stores of water soluble B vitamins.
Finally I woke up one day without a voice! My vocal cord had become paralyzed! I’d read that its roughly the same nerve branch that gets affected in Bell’s Palsy. Some studies show that B12 injections speed recovery of Bell’s. The ear, nose and thoat guy who was treating me for Idiopathic paralysis of the vocal cord refused to give me B12 so I found a doctor who gave me a bottle of Methylcobalamin and some needles. I was injecting myself once a week during the vocal therapy I was prescribed. Suddenly the vocal cord started to wake up. According to the first doctor I was the speediest recovery of paralysis he’d ever had. It still was 8 weeks with no voice!
The profound B12 deficiency was not only caused by the fact I ate no red meat but that I also have the gene variations that make it difficult to absorb B12 it turns out. The final key to this sudden B12 crisis was a stool test showing that I was creating anti-bodies to gluten and that I had stomach inflammation that had progressed to leaky gut. I was deficient in B vitamins and magnesium… both are common deficiencies when food allergies are involved.
I now take the stool test every couple of years to check on the condition of my stomach and bacterial ecology. I need to eat gluten for a few days before the test to get the antibodies on alert. I started eating gluten last week because I’m going to test soon but I actually extended my gluten eating for for over a week because I miss all these foods so much. Key lime pie and bread at Joe’s Stone crab in Miami! I’ve paid for it though! I immediately started to get lots of mucus and a need to clear my throat often… no big deal. Then I started to get a mouth full of canker sores. Very small but irritating sores that I think probably extended down my digestive tract in response to being exposed to gluten. I choked on and spit out water while taking a drink twice because of my vocal cords allowing water into my lungs. Then I started to get hoarse and could tell that I’d lost part of my upper vocal range! I’d been though this before so I know what’s happening to me.
That scared me enough to run and get a B12 injection at the doctor since I no longer inject myself. As I was paying the $15 and thinking about traffic on the way home I suddenly got a cramp in my vocal cords and as I stood there the pain moved down my esophagus to my sternum. I almost stayed there at the doctor to see how bad the pain would get but I felt a release of the cramped muscles after about 15 minutes or so. Within a hour my vocal range started to come back too. A few hours later I felt a burning in the muscle in my back that is still mildly atrophied from previous nerve conduction problems I experienced. So there it is… I must have been heading into another deficiency crisis brought on by introducing gluten back into my diet and not keeping up with the B12 supplementation.
I’m just posting this because I didn’t find a lot of help with my vocal paralysis issues on the internet. I just want to say that my vocal paralysis is absolutely the result of B12 deficiency and MY vocal cords and the nerves that control them are very, very sensitive to B12 levels. I do not believe that it is a rare as the study below would have you believe. If you have a weak voice with excessive need to clear your throat then I suggest methylcobalamin B12 injections or 5000mcg sub-linguals. The results for me are almost immediate in the strength of my vocal cords.
Vitamin B₁₂ deficiency: an unusual cause of vocal fold palsy
DISCUSSION:
To our knowledge, this is the first reported case of unilateral vocal fold palsy secondary to vitamin B12 deficiency. Central and peripheral neuropathies have been described; however, other than the optic nerve, the cranial nerves are very rarely affected. It is important to consider vitamin B12 deficiency as a cause, as speedy identification and treatment can help prevent permanent neurological damage.
http://www.ncbi.nlm.nih.gov/pubmed/21791159
Molly Malone says
Thank you for this, I do have a weak voice, and I clear it all the time just in order to speak, and yes, I am B12 deficient but it is not as simple a fix as I would like, I suffer from chronic fatigue as well – likely a methylation issue.
I take B12 sublingually as 2000mcg methylcobalamin and 2500mcg adenosylcobalamin, along with a b-complex that contains 800mcg folate. It helps, but it is not a cure, I have slowed the degenerative spiral downward, but have neither stopped nor reversed it. I am still working on it.
Thank you for this invaluable comment, I had no idea voice could be another symptom! I too have lost my voice, due to stress, for 3-4 days each time, but it returned on its own. Good thing because I knew nothing about this.
Thank you, thank you, thank you!
tim davis says
you sound like you have celiac disease. maybe you know that I tend to skim
Amanda P. says
I’ve heard that aspartame keeps you from absorbing b12. Is this true?
AnnF says
I haven’t heard that, but I try my best to avoid artificial sweeteners. As far as I am concerned, they are poison. Check out “A Poisoned World” for the story of aspartame. I streamed it on Netflix, but I don’t know if it still available there. I personally had problems with sucralose. I used to eat these liquid filled mints — I haven’t seen them in years now — and I noticed that I was jittery and paranoid. I stopped eating them, and I was o.k.. I started to eat them again, jittery and paranoid.
The problem is that they sneek artificial sweeteners into EVERYTHING now.
Susan says
What about people like me with gene mutations like MTHFR? What do we do?
Jon Grant says
Methyl folate and some form of B12 other than cyanocobalamin. And make sure you are supporting all of the other b-vitamins. And be careful with dosages of methyl folate and methyl b12; some people are very sensitive.
Vigdís says
I was wondering if someone could help me. I was affected by B12-deficiency when i was a teenager. Due to age prejudice doctors didn’t diagnose this until I was 18. By that time I was always tired and didn’t do anything except sleep and torturing myself to go to school. I had problems communicating myself because I couldn’t remember the right words and my longterm and shortterm memory was a mess. Before that I was an excellent student and I always loved studying and i am very ambitious. I’m 23 now and i have gotten shots regularly since then and yet my memory and ability to communicate myself hasn’t gotten to the level that is was before the symptoms begun. Now I am very aware that I am a very slow learner and it doesnt matter how much i concentrate or try my memory is very bad and I still mess up words when i’m speaking. It makes me really sad because i wanted to go to university and i had it all planned but I know that I am not capable of what they expect from us. I suspect some sort of neurodamage due to the b12 deficiency but the doctors say its unlikely. I ask, is it really that unlikely and what can I do ? Is it possible to find it out if there is damage ? I just want them to aknowledge their mistake if that is the case.
ACurtis says
Have you been tested for heavy metal toxicity? I urge you to find a practitioner whose niche/speciality is heavy metals and chelation. You would be surprised how many of your symptoms are because of heavy metals. Heavy metals also displace minerals in the body and can contribute to health issues that way as well.
Teresa says
I am a 52 year old women with Pernicious anemia and have been taking B-12 shots since I was 40 years old I got admitted to the hospital This is when I found out I had no B-12 at all I have been taking the shot every 3 weeks since. I have trouble saying things sometimes like for instance Go get the pan off the table when I mean stove I turn my my words around an I realize I have said what I say after I do it but sometimes it just comes out wrong I to find it hard sometimes to talk to people because you just don’t know when im going to twist my words It doesn’t happen a lot but enough to notice I find it happens more when my B- 12 is low I get sleepy a lot even with the shot and get mood swings Now about your education Go part time and take extra time to study lots of schools have tutors
Sandy says
Teresa, you are the first person I have come across that does the EXACT same thing as I do with my words!!! I am a 47 year old woman and have been dealing with this for more than 4 years now. I just had a metobolic panel done including B12. This is the first time my Dr. has ever checked my B12 levels. They came back at 133, which according to the chart shows very low. She recommended I take 1000mg of B12. Can you tell me whether taking the B12 shots have helped your word finding/ saying the wrong thing (as I call it)?
Ana says
I did the same word mix-up routine. I had never ever had problems like that before. Sometimes I couldn’t come up with the right word so I would describe the missing word….and that can sound really weird! At my age I worried people would think my brain was declining. The methyl B12 shots have helped me and I think I can feel it when they wear off. Right now I get one shot a week. The word mix-ups are about 90% gone now. I hope this helps. One more thing. I see a Functional Medicine nurse practitioner and she is very knowledgeable about B12 and other supplements.
JRS says
Ana, can you let us know name of functional Medicine nurse practitioner ?
Tony says
Vigdis, please do not make the truly fatal error of assuming that you have been damaged for life because if you do you may make it a self fulfilling prophecy. Learn as much as you can about optimising your methylation and consider going on a very healthy nutritional ketogenic diet. If you enter into a healthy state of ketosis I expect that you will discover that your brain is quite fine. The best way to do this will be to get some guidance from a doctor who fully understands the principals of a ketogenic diet. You can try do it alone but you then run the risk of assuming that you are permanently damaged if you do not get it right. (I hope you get your life back very soon!)
AnnF says
Hi Vigdis,
The idea of checking for heavy metals is a good one. If you have fillings that contain mercury, that could be it.
What kind of B12 is in the shot? Does it contain preservatives? People here have talked about the different kinds of B12, so read all the posts.
Take Magnesium, D3 and B2.
Have your thyroid checked. Thyroid can affect memory, and it is a problem with people with B12 deficiency.
You’ll find that once you have B12 deficiency, your body is kind of like an old house — you fix the roof, and the plumbing goes, you fix the plumbing, and the plaster starts crumbling. So don’t be surprised if you have years of doctor visits ahead of you. You will eventually reach a point where you say to yourself, “You know, I still feel rotton, and yet I’m feeling pretty good.”
Good luck, and let us know what happens.
brenda says
I a going through everything that you stated, and although I am 63, I have had iron deficiency and low B 12 since I was young. I never took it as anything ore than, ( oh I just need to ear a few more vegetables) it is not serious,but I am dilibated this time, with not being able to stay awKe, or even and sturdy o y feet.. I have gained weight and I feel worse Thani have come during much more seriousilless’ ..please aside from the pills twice daily , is there anything else I can do to speed up the healing. Devastatingly tired out?
PJ says
Hi Brenda,
I don’t know if you will be reading this…
but I was recently introduced to a new supplement unlike any other on the planet. It is called, ASEA. It is said to increase “redox signaling” in our bodies(a much needed function for every function in our bodies). It also is said to increase our glutathione by up to 500%. Glutathione is so very important. It is a major antioxidant and there are many studies that support it as a detoxifier and healer in our bodies.
If you are interested in learning more, you can go to
health2cells.teamasea.com
Since I have been taking it(about 6 oz per day), my energy is much better.. and I mean MUCH better.
I also have started taking Stem Worx.. available on Amazon.com This product, too, has had remarkable results and I have only started taking it a week or so ago. It stimulates our own stem cells. That too has increased my energy.
Before taking these 2 supplements, my energy was quite low and I was taking numerous other supplements. I am pretty good at research and believe that the supplements I was taking prior to the 2 mentioned above, were pretty good..quality-wise.
Anyway, we are all different, however, we all have redox signaling molecules in our bodies. Every cell function requires them. However, they lessen by 10% every 10 years after age 30.
“A balanced Redox potential in the tissues increases the efficiency at which oxygen, fuels and wastes can be transferred in and out of the cells and tissues, making the natural aerobic processes more efficient. If aerobic capacities are increased, then the natural length of time that aerobic activity can be sustained under high energy demands is also increased.” (Special Report: Redox Signaling Molecules” Optimizing Your Cells To Stay Healthier, Younger, Longer”)
There is a lot of science behind the importance of well-functioning Redox Molecules. All I know is I feel a lot better.
I have a doctor friend who was tested using dark field microscopy before and after taking ASEA. This is a post I wrote on youtube about her experience with ASEA:
————————————————————-
I have a friend who came over on May 6, 2016 to tell me his daughter’s (to whom I also know), along with her boyfriend’s, experience with Dark Field Microscopy and ASEA.
She is a doctor of Chinese Medicine and Acupuncture. He told me that she was introduced to ASEA by a health professional contact of hers. At first, she had her doubts about the product.. and wanted to be certain that it would work for not only her patients, but also for herself.. due to Lyme Disease.
So, she called a friend who is an MD who also does Dark Field Microscopy and made an appointment. She and her boyfriend intentionally did not try any ASEA beforehand. When she arrived to her MD friend’s she and her boyfriend’s saliva and blood were both tested. The results for the boyfriend showed numerous parasites.. including liver flukes. As it was told to me by her father.. “he was loaded”.
For her, the test results showed up spirochetes and numerous co-infections (she has been very ill for the past 3 years). The test also showed she had no white blood cells.
After they were tested, they each drank ASEA. Being that she is so ill, she only tried a quarter dose (1/2 ounce) of ASEA, whereas her boyfriend drank 2 ounces.
They each were retested (20 minutes later). The results were astounding. Her boyfriend’s test showed him to be almost clear of the parasites and pathogens. For her, the results showed numerous white blood cells at work, whereas before taking ASEA it showed she had no white blood cells.
All my best,
PJ
————————————————————–
All the above statements are not to be construed as a treatment nor cure for any disease condition or affliction.
I am not a licensed medical health care provider.
Always seek the advice of your physician or other qualified health care provider with any questions about your medical condition, especially before implementing any dietary changes or adding supplementation to your diet.
Also, do not disregard professional medical advice or delay seeking advice or treatment based upon information gained above.
All shared information are either from my own opinions, the opinions from others, from personal experience or experience by others and/or are based upon that which I have read from scientific studies, medical doctors, doctors of acupuncture, herbalists, nutritionists, homeopaths or other health care providers, and is provided to the best of my understanding, ability and recall.
Any implementation or change in diet, exercise, supplementation, herbs, medications, medical care is done so at your sole risk and responsibility. These and any subsequent considerations in your health care should first be discussed with your medical doctor/provider.
Consider all information gained here for educational purposes only.
My licenses/degrees include:
Biofeedback
B.A. Fine Arts, English
Masters in Education
PJ says
Also, so what does this have to do with Vitamin B12?
Before learning about ASEA & Stem Worx, I was studying Biomagnetismo(I highly recommend this healing modality). What I learned, from Dr. Goiz who developed this healing protocol, is that just about any disease you can think of is or can be caused by a pathogen(viruses, bacteria, fungus, parasites). I also learned that these pathogens can rob us of many vital nutrients, including B12… not to mention iron, manganese, magnesium, etc.
To rid the pathogens is to rid many of our deficiencies as well.
———————————–
All the above statements are not to be construed as a treatment nor cure for any disease condition or affliction.
I am not a licensed medical health care provider.
Always seek the advice of your physician or other qualified health care provider with any questions about your medical condition, especially before implementing any dietary changes or adding supplementation to your diet.
Also, do not disregard professional medical advice or delay seeking advice or treatment based upon information gained above.
All shared information are either from my own opinions, the opinions from others, from personal experience or experience by others and/or are based upon that which I have read from scientific studies, medical doctors, doctors of acupuncture, herbalists, nutritionists, homeopaths or other health care providers, and is provided to the best of my understanding, ability and recall.
Any implementation or change in diet, exercise, supplementation, herbs, medications, medical care is done so at your sole risk and responsibility. These and any subsequent considerations in your health care should first be discussed with your medical doctor/provider.
Consider all information gained here for educational purposes only.
Menak says
I am experiencing the same problem as V. I was already iron deficient but started experience b12 deficiency symptons at 20 ( 150) and was told its just bit on lower side.I couldn’t remember words, my short term memory was extremely bad and had balance problems. I used to have an extremely good memory and had a sharp brain. Now at age 26, have realized the severity. I got used to all the symptoms(tingling, forgetfulness) and couldn’t figure out what was wrong as my doctor said everything was fine.I can say that I feel very dumb and its taking toll on my life. I have been feeling emotionally numb for years and have no motivation to do anything( no hobbies and no desire to date). I just want to be how I used to be but I am afraid damage is permanent 🙁
Maluba Wakunguma says
Hi Menak
I was also recently found with B12 deficiency (126). The constant fatigue, the memory loss, losing the words I want to speak out has also made me feel dumb and very emotional. I thought I was going crazy. I have since had to quit work as my performance and ability to deliver were affected. Even typing out this email is more challenging than before. Despite the injections my levels seem to be dropping to quickly once the injections stop. I dont know what else I can do to restore my life to normal. Your sharing does help though. You are not alone.
barbara says
I could cry as all these symptoms are mine why are we ignored and if the doctor felt like we do sure would do something
Kymm says
Hi, what has worked for me for the last few months while trying to find a Dr./specialist who truly understands B12 deficiency is very high levels of sublingual METHYLcobalamin (5,000 mcg) tablets. I used to tske 60 a day, 5 under my tongue at a time every hour for 12 hours every day for a couple of months. I am now taking half that. I know it sounds excessive, but it has worked. I had to take matters into my own hands since doctors have not been helpful for me so far. Remember the shots are usually 1 ml. There are a million micrograms in a milileter. I checked in on a conversion chart in order to figure out how many to take. Expensive, obviously, but until a knowledgeable Dr. prescribes the shot, well desperate times call for desparate measures..I am back to myself again, and I had just about every symptom B12 deficiency comes with.
AnnF says
Kymm,
Yikes! That is a lot! I know it’s sake and all, but don’t forget, your liver and kidneys have to deal with it, and they might not be too happy. Also, everything is really like a tangled bunch of strings in your body — you pull too much on one, ten more are pulled — so that amount might throw everything else out of whack.
You don’t have to worry about converting all that tablet amount into shot amount. Remember, the shots go directly into your blood stream.
Kymm says
Oh, hi, Thanks for the reply. Yeah, the problem is getting a doctor to prescribe the shots, believe me I would prefer that! weight loss clinics do and I tried that, but I do not respond well to cyanocobalamin, which is what they use. My doctor okayed me taking 30 sublinguals a day, I asked her about shots, she said for now keep taking them and after more tests we’ll talk about it again…
Martha Barletta says
Hello,
Please research B1 and B2 deficiency, as these can be correlated to B12 deficiency. Also, nerves can take a long time to regenerate, so don’t give up and keep researching. (Phoenix Rising is a good site.)
Stefanie says
Hi There,
Is there anyone who can help me out?
I have a low b12level of 102 pmol/l. Normal range is between 130 and 700 pmol/l. I have been having symptoms for years (just never knew about b12, neither did my gp). So my levels must’ve been low during my pregnancy as well. My baby who is now 13 months old had a score of 240 on vit b12. I haven’t seen any symptoms yet which is a relief. Thankfully I only breastfed for a short period of time. But still I wonder what to do now. My gp doens’t know much about b12 she said and thinks this is a good score, because it lies in the normal range…So what would be best? I have read that it is good to supplement children but I don’t know what would be the best dose, because I read different things on that. Also, I read that even though you can’t have too much b12, it cán lead to an imbalance when it comes to other vitamins. I have read that potassium levels can drop once you take on high doses of vit b12. I want to be a good parent and give my child whatever is necessary, however I am afraid of consequences like these in the longterm. I also can’t find anyone who treats children. I hope you can help me! Thank you very much in advance.
Tracy says
Hi Stefanie,
Sally Pacholok has a new book out called “What’s Wrong with My Child?: From Neurological and Developmental Disabilities to Autism…How to Protect Your Child from B12 Deficiency” which you should purchase, it’s available from Amazon. Disclaimer: I haven’t read it, but I do own “Could It Be B12? An Epidemic of Misdiagnosis” and it is a real eye opener. This is a serious problem that the medical community is misinformed and not doing enough about.
Don’t believe the range your doctor uses. I don’t know why it is so low but there are many who get neurological damage within the so-called “normal” range. For adults, below 500 is considered too low, normal is 900 or higher. I believe children should have higher levels because they haven’t yet built up their stores. The liver stores 4 – 5 years worth of B12.
Spend some time perusing the rest of the comments below. I’ve posted quite a few, search for my name (there are a few at the end that are from a different person with the same first name).
Gloria Roberts says
What are the signs of b12 loss after gratis bypass? Surgery
was in 79,
EILEEN A SMYTHE says
Diagnosing and Treating Vitamin B12 Deficiency
YouTube video featuring Sally Pachlok is a must-watch for you and your baby. Given what you say about your baby it is essential to watch the whole thing right to the end. I echo Tracey’s advice wholeheartedly – good luck and God Bless.
Ganesh says
Hi,
From past few years (around 5 to 6 years) I stopped eating Non vegetarian (except egg – taking one or two eggs per week). From that time on wards I gradually lost weight. I was around 65Kgs and now I became 50Kgs. I have no fatigue and any other problems. Daily I am doing Yoga, meditation etc. Yesterday I undergone blood test for B12 levels and came to know that I have only 133 reading. Doctor suggested to take me B12 supplementation which will make you observe the food what you take daily. Please let me know do I really lost the weight because of B12 deficiency. Do I have chance to regain at least 3 to 5 Kgs weight after taking B12 supplements. Waiting for reply.
Ganesh says
Hi,
Do I have chance to regain at least 3 to 5Kgs weight after taking b12 shots.
AnnF says
Hi Ganesh,
First, are you male or female? Also, what is your age and height? Did you Want to gain a little weight back, or are you afraid of gaining some weight back?
AnnF says
Hi Ganesh,
First, are you male or female? Also, what is your age and height? Did you Want to gain a little weight back, or are you afraid of gaining some weight back?
If you are B12 deficient, you can gain weight, like 1 dress size worth, here and there with no apparent reason. When you start taking B12, this stops happening, and losing weight becomes a little easier. I hope this answers your question.
Since you are a vegetarian, you should take B12 methylcobalamin 1000mcg tablet under your tongue every day. You should also take a multivitamin, B-complex vitamin, B2, D3, magnesium, and eat a banana a day.
Cindy Cahill says
So many people don’t realize that there are different types of vitamin B-12, Methylcobalamin Vitamin B-12 1000 mcg being the best type. If you take B-12 orally then check the label’s ingredients to make sure you’re getting the best kind.
AnnF says
I should have also mentioned that not all B12s are for vegetarians. Find out which ones aren’t made from meat. There aren’t that many.
Tess says
Hi,
I was recently diagnosed with b12 deficiency, my levels were just 71 (UK). I have lots of symptoms, the main ones being pain, burning skin, extreme fatigue, dizziness, breathlessness and confusion. I’ve had the initial six loading doses, and now have to wait three months for the next one, which is ridiculous. I’ve seen no improvement after the loading doses and asked to either continue them or be referred to a specialist, doctor declined both. I’m the last month I’ve caught both mumps and tonsilitis, which I feel must be connected as normally don’t get more than a bit of a cold. I’ve been reading everything I can, this seems to be a hidden disease which gps don’t know enough about.
Greg says
If you are in the UK, the main forms of B12 for injection are hydroxyB12 or cyano-B12. I don’t know why because the EP has got methyl and adenosyl passed as food additives. If you are B2 deficient or have hypothyroidism (very common in women) you can have troubles converting the “Pro-vitamin” forms of B12 to the active forms. Your blood levels will go up, BUT these basically only measure what you have been injected/supplemented with, and don’t measure the active forms. The problem then is that the docs don’t know this and when they check your B12 levels they will say that they are find and therefore your problem can’t be B12. This message has been around for decades, yet the problem persists. There are other problems as well. Do you know which form you were injected with?
AnnF says
Hi Tess,
I was watching “Living With the Fog” on YouTube, which is about trying to get shots for people in the U.K.that need it as OFTEN as they need it. To tell you the truth, if you usually don’t get sick that often, then the mumps and tonsilitis are probably just bad luck, or if they were within a month apart, one probably helped the other get a foothold.
Ask your doctor if taking sublinguals or using the oils will interfere with being allowed to get more shots. If not, then I would definitely supplement.
kath A says
Hi, i have just had my blood tested by a locum doctor who has said i have symptoms of vit b12 deficiency. My results have come back as 170 but i have been told by my usual doctor that the level is normal? can anyone please tell me if 170 is classed as normal i am at a loss as to what to do. I have a follow up appointment to look at my symptoms with my normal gp as he wants to do more tests. I have been trying to get to the bottom of this for at least two years now and my symptoms are getting worse. I am suffering daily with not fatique but more like exhaustion, i have pins and needles in my hands and feet and when i do get myself up and try to get motivated my legs feel un co ordinated and like jelly if that makes sence. I often feel nauseous and poor appetite I fall asleep most of the time when sat down, cant focus on my work especially training days in a classroom. Iv started feeling a bit faint this week with dizziness and sometimes become breathless ( like im just not getting enough oxygen ) so have been signed off for a week. My vit d levels are 38 and been told they are slightly low so have brought some supplements. I have been taking omeprozole for approx 4 yrs. Would that have anything to do with it? Any advice people please.
Tracy says
kath,
Yes long term use of omeprazole (Prilosec) very likely has a lot to do with your symptoms. It reduces stomach acid, which is needed along with the intrinsic factor created by your stomach to absorb B12 from your food. Since your liver stores 4 – 5 years’ worth, using omeprazole for the short term should be okay. But it’s EXTREMELY dangerous to take it for years as you won’t be replenishing your B12. There ought to be a strong warning on the box about the potential for B12 deficiency and permanent nerve damage if used long term.
In the book “Could It Be B12? An Epidemic of Misdiagnosis” Sally Pacholok says 200 – 450 pg/mL is the gray area where neurological damage can occur and you are below that. I’m assuming the units for your B12 is pg/mL (or ng/L in the UK which is equivalent)*. The range used by most doctors is far too low. Usually 200 is the low cutoff, your B12 is way under that. Why is your regular doctor using such a very low cutoff that 170 is considered normal?
* Some countries use nmol/L and the corresponding range is 147 – 332 nmol/L. Multiply your B12 number by 1.355 to convert to pg/mL.
You have likely depleted your stores and need to get loading doses of B12 ASAP. Supplements probably won’t do it, you need shots. But – first you should get your MMA and homocysteine tested, which can confirm you are deficient. You should also be tested for pernicious anemia (intrinsic factor antibodies test and parietal cell antibodies test). These tests must all be done BEFORE you supplement B12 as it will skew the results.
You really are going to need to get off the omeprazole which can be difficult. Do an internet search, others have suggestions. Most people who take it really had the opposite problem, too little stomach acid, which has similar symptoms. The drug companies have gotten it all wrong and have sold the public on a very dangerous cure for stomach problems. And what’s worse is that it is now available over the counter so there isn’t a doctor monitoring the use of this drug (not that they all even realize what can happen, nor are they aware of the symptoms of B12 deficiency).
I’ve made other detailed comments in this thread, search for my name.
Sonia says
I have been on Omeprazole for years,and have Osteoporosis,discovered Omeprozole affects youe bones and now that ir affects your B12 levels,I now take Ranetidine which isnt as effective for my gastritis,asked Dr to check my B12 and they constantly say my B12 levels are fine because the levels in this country are too wide compared to other countries,but I have symptoms,what can I do
Greg says
Hi There,
Your levels are way, way low. Many studies have shown that even 400 is sub-clinically low, with brain shrinkage of 2% per annum occurring in one study. Homocysteine and MMA have been shown to increase at levels below 300, so your levels are way below that. Be careful with what you supplement with as some people have found that if they get cynanoB12, it can result in increased levels of homocysteine, presumably because this inactive form of the vitamin competes with the active forms of B12 and blocks their “good” activity.
Keziah says
Hi there, just wanted to correct you on something.
B12 is NOT only found in animal products. B12 is a bacteria, found in the dirt. The B12 in animal products comes from the dirt those animals ate. In fact, livestock no longer feed on grass and dirt on factory farms because pesticides KILL B12 producing bacteria. Plus, animal products high in B12 also heighten risk of cancer and heart disease… (try vegan!!!)
B12 is also killed as soon as it is cooked, so whatever limited traces of B12 there might of been in the animals flesh is eliminated as soon as its cooked. Oh, and did you know that 90% of the worlds B12 supplements are fed to livestock?! That says A LOT.
Grab a carrot and don’t wash it and there is bound to be an abundance of B12 on it. This generation is too clean, no wonder our immune systems are crap.
For all vegans/vegetarians, B12 can be found in any fortified plant based milk and nutritional yeast.
ANYONE can have a B12 deficiency, regardless of diet.
Molly Malone says
A minor point, but… B12 is NOT a bacteria, it is MADE by bacteria from cobalt and other nutrients.
Pesticides and industrial fertilizers (rather than compost or fermented compost) are a modern day scourge, deadly to all living things, I agree with you.
There is no hard evidence that I have seen or can find that claims that too much B12 can lead to heart disease. B12 is water soluble, and in the body too much will wash out and is excreted in urine. On the other hand, too little B12 can cause heart disease, among other issues, some of which mimic MS (Multiple Sclerosis).
As far as cancer is concerned, information is conflicting. There is only one study that claims that high levels of both folate and B12 may increase the risk of prostate cancer. The authors also note that this is only one study. That the authors found what they think they found I have no doubt, but I would like to know what form of supplements may have been used, if any, and I would like to know all the details of the study. Without the details, we cannot really know much of anything, sadly. There are several studies that claim the opposite, that more B12 prevents or suppresses cancer.
http://www.ncbi.nlm.nih.gov/pubmed/15499634?dopt=Abstract
http://www.westonaprice.org/health-topics/abcs-of-nutrition/vitamin-b12-vital-nutrient-for-good-health/
I agree about scrubbing carrots rather than peeling them, but this small amount of soil bacteria assumes several things that have not been shown to be true, and that have in fact been shown to not be true.
The assumptions are:
1 – Healthy soil fertilized by compost
2 – And filled with healthy bacteria.
3 – The presence of just the right bacteria that manufacture cobalamin(s) in said soil.
4 – The correct other nutrients in the gut to enable these soil bacteria to manufacture cobalamin(s).
5 – A large enough population of B12 producing soil bacteria on the food that is eaten to produce enough B12 in the gut to prevent deficiency.
6 – And last but not least, the ability of the gut to absorb this B12 from the gut bacteria.
These have been shown to be highly unlikely, and vegans often are deficient.
“Preliminary results show that, unlike other B-vitamins, humans don’t get enough B12 just from bacteria in their gut, and need more of it through exogenous food sources.”
https://www.quora.com/Exactly-what-kind-of-bacteria-produces-Vitamin-B12-and-under-what-kind-of-natural-habitat-and-climatic-conditions-does-it-thrive-in
http://www.veganhealth.org/b12/int
http://plenteousveg.com/b12-intestinal-bacteria/
B12 is not “killed” as soon as it is cooked, though its activity is reduced. Vitamin B12 is heat stable. The cobalamin molecule breaks down at 250˚ C. B12 is therefore destroyed on the surface of grilled meat, but not in the interior. Gentle braising or cooking steaks to rare or medium-rare best preserves B12 in meat.
Though B12 (cobalamin) is heat stable, it is not stable in either acid or alkali environments. It slowly loses its activity when exposed to light, oxygen, and acid or alkali environments. Please keep in mind that the stomach is an acidic environment, which may be why sublingual drops or tablets seem to work so much better than pills that are swallowed. The B12 bound in food is another story altogether, the digestion of which is much more complicated than that of supplements.
Vitamin B12 is present in liver, organ meat, muscle meat, shellfish, eggs, cheese, fish, and can be manufactured in the body only by gut bacteria. (Again, these gut bacteria are not enough all by themselves to prevent deficiency in humans. B12 is manufactured below the point of absorption, the ileum.)
Vitamin B12 can not be manufactured by any plants, it is only found in animal products. The possibility that some B12 producing soil bacteria may adhere to fresh root vegetables still does not make the case for plants producing B12 – they do not, nor do they contain any B12.
Vitamin B12 is produced commercially from bacterial fermentation.
http://orthomolecular.org/nutrients/b12.html
Your idea of drinking or eating fortified foods seems to be a sound one concerning B12, but it is not possible if one chooses to eat only whole foods. Vegans can make their own nut milks, I have done, but where is the B12? Missing, though I wonder if a crushed tablet or a drop of liquid B12 might just work. The dose would have to be carefully calculated, but it could be done. However, the milk would be exposed to light and air for a time, so I could not say what B12 activity would remain.
http://www.beyondveg.com/walsh-s/vitamin-b12/vegans-1.shtml
Here is good news: “Several probiotic bacterial species such as Lactic-acid bacetria (LAB)- Lactobacillus spp.(species), Propionibacterium spp. or Bifidobacterium spp. can produce B12 and other B-vitamins. Two species that possess all the genes for B12 synthesis are Propionibacterium freudenreichii (A genetically-engineered strain of this bacteria is used to make B12 commercially) and Lactobacillus reuteri (naturally found in most human intestine).”
https://www.quora.com/Exactly-what-kind-of-bacteria-produces-Vitamin-B12-and-under-what-kind-of-natural-habitat-and-climatic-conditions-does-it-thrive-in
So perhaps we should all take our probiotics and eat homemade yogurt regularly.
Here’s a good article that complements Chris’s on how it all works:
http://www.westonaprice.org/health-topics/abcs-of-nutrition/vitamin-b12-vital-nutrient-for-good-health/
Margaret says
Hey Molly, I think you’ve cleared up a mystery for me. Last year I had blood tests done by a GP who informed me that my folate and B12 were too high and to be sure not to supplement any further. This is the thing, he assumed I was supplementing because I consume mainly vegan foods. I was not taking any such supplements though. I was however taking lots of probiotics and experimenting with different ferments. So perhaps that is why my levels were high? Margaret
Maureen says
Hi Margaret,
I just stumbled on this website and your post caught my eye. I, too, had high serum levels of B12 without supplements. I am not a vegetarian. I had also been on PPIs for many years. They were looking at B12 because I had a long history of fatigue and ‘brain fog’. My levels came back more than 25% above the upper limit. Dr said ‘we only worry if it is low’. It really bothered me, and awhile later I saw a nutritionist who recommended intracellular micronutrient testing. B12 levels were deficient intracellularly. I was found to be homozygous for the MTHFR a1298c polymorphism, which presumably affected my ability to get B12 out of my bloodstream and into my cells. I Have been supplementing daily with 1000 mcg of sublingual methylcobalamin and have seen noticeable improvement. So, even ‘high’ levels of B12 in your blood may be misleading. I have lots of things wrong with me – all stemming from a 20 history of RA and consequent treatment with steroids and other meds, but have found many approaches that have helped improve well-being and this was definitely one of them.
Jen C says
HI Maureen- my husband has been dealing with RA and gastrointestinal issues for years. we just had his b12 and folate tested and they were above normal. (i foolishly made him take a b complex vitamin the morning of his blood work) so that may have something to do with it as well. He has been on PPI’s for 2 years due to severe acid reflux. he also has low iron. we are currently on a waiting list for a functional medicine doctor but in the mean time i’m looking for insight because his RA, family and gastro doc offer us nothing in terms of a solution. only more medications. thank you! J
Maureen says
Hi Jen!
Embarrassed because I seldom check the email I used for this post and never saw your comment until now. I am glad the info I shared about my experience was helpful to you and your husband! I am curious to know whether you were able to see the integrative medicine specialist and/or if your husband has found anything that helps.
A few other commonalities we might share: I was originally on PPI because of presumed risk due to prednisone. However, I remained on them for years after I stopped prednisone b/c then I had reflux. I also used to get a lot (4/yr) of sinus infections & the otolaryngologist told me that many with chronic sinus problems are now believed to have GERD. in any event, I no longer have reflux and I believe that is because I eliminated gluten from my diet. I do not have celiac disease, but I notice that my body does not seem to like gluten:). I have had a small but noticeable improvement in joint pain also. Haven’t had a sinus infection in at least 4 years (knock on wood – don’t want to jinx myself.)
Like other posters I have also been diagnosed with vit D deficiency and have had to supplement with as much as 100,000 units/week at times. DRAMATIC improvement from vitamin D3.
Lastly, the micronutrient testing revealed low or borderline low results for about 15 vitamins and minerals. I have taken supplements for each seperately and have an overall improvement in well-being. I took each for a couple of weeks before introducing a new one so that I could identify any changes and tie to a specific supplement. I did not notice anything special except for the B12, D3 and also magnesium. Great effect from magnesium malate. Improved joint pain, greatly improved sleep, helped lower BP, felt calmer. I think the cumulative effect of supplements targeted to areas I was deficient in has been responsible for me being so much better. Hope this helps, too, and let me know how you are doing if you pick up the message.
Anthoney Mahateva says
Exactly.
AnnF says
Thanks to whomever suggest B2. I can really feel it working. Sorry, but people should know, it helps with my pooping.
Lisa says
Hi,
10 years ago I fell very ill and was in hospital for a week. The consultant said they did not know what was wrong but that my white blood cell count was ‘way too high’. I was exhausted, the glands in my neck were so enlarged that I had lumps the size of oranges leaving me looking deformed (they carried out an ultrasound to look for non-hodgkins / hodgkins in the lumps but this was clear), my tonsils were swollen too. I was ill for 2 years following this suffering with weight loss, hundreds of mouth ulcers, UTI’s etc. I had further blood tests but the results went missing for 6 months so I assumed all clear when I didn’t hear anything then my doctor called saying it showed that I was vitamin B12 deficient but as it was 6 months ago and the ulcers had gone he would ‘file his papers’.
I’m 33 & have a healthy diet but it’s been a running joke that I catch every bug going around.
Almost 2 years ago I caught Molluscum Contagiosum and have been unable to fight it off leaving me feeling very down.
My doctor finally carried out a blood test a week ago and I got a call 1 day later saying I need to see the doctor asap as I have a vitamin B12 deficiency.
I am seeing the doctor on Thursday but want to be more informed this time. Is it possible that I have been deficient all of this time? Could this explain why I seem to catch everything and not be able to fight it off like a normal healthy adult? I do have other symptoms (out of breath, palpitations & tiredness).
Can this affect the immune system?
Any advice would be appreciated seen as my previous doctor just ‘filed his papers’!!
Thank you
AnnF says
Hi Lisa,
My sons had Molloscum, and it took a very long time to go away. What really helped was Grandpa’s Pine Tar Soap in the bodywash form, and dabbing then with alcohol pads. Once they started washing and dabbing, the molloscum cleared up in two to four weeks.
When you say healthy diet, what do you mean?
Had you had some illness before you started getting sick all the time? About 20 years ago, this woman on the bus kept coughing right in my face. A few days later, I became ill for three weeks. My old family doctor, ” I don’t know what you got, but you got it good!” ( I miss my old doctor). After that, someone would have the sniffles, and I would get the flu.
After I started taking my vitamins that I have listed elsewhere here, I did start having more resistance. I don’t exercise because of my asthma, but now that it’s cooler, I’ll start going for walks, and I am sure that that will help my resistance even more.
So, my advice to you, is to take my list of vitamins, plus B2, and do calm exercise like walking, even in cold weather, and you should start seeing an improvement before you know it.
ACurtis says
Get checked for the genetic mutation MTHFR. If you have any of the mutation SNPs, you will likely have issues with folate and Vitamin B12, maybe other methylation pathways. Can get it done yourself through 23 and Me for $99.
John Macgregor says
There are four different types of B12 that I know of (the one you didn’t mention is adenosylcobalamin), and each has different functions & tends to live in a different part of the body.
When you don’t respond to one type of B12 (this is a common problem with cyano & hydroxy) it’s advisable to trial what the others will do for you. Most responses seem to come from methyl.
MethyB12 (methylcobalamin) is perhaps the most commonly deficient one – & still isn’t well-known.
The Japanese may be resistant to neurological disease not because they eat more B12, but because the supplemented form there is methyl, unlike in the West.
Finally, methyl & adenosyl B12 are crucial to the methylation system, but often can’t work well without cofactors such as each other, & methylfolate & carnitine (which crank up ATP). There is a protocol – named the Freddd Protocol – which addresses the whole picture.
This rather radical paper by British oncologist Carmen Wheatley seems to have changed the landscape re adenosyl B12:
http://www.hy-ls.org/index.php/hyls/article/download/92/92-325-1-PB.pdf
william luke says
Can my other blood work be good and be B-12 deficient?
james says
I have been vegan for 1 year and just had my blood tests done just to make sure i was getting enough nutrition as a vegan.
my b12 levels came back as (<125).
I have lots of energy and had no symptoms that everyone else in the comment section had.
I am now taking a spray under the tongue once per day.
It's very strange that if you're levels are below 500 in japan then you are classed as deficient, but in the uk it's 180.
Tracy says
I believe something happened in Japan during the 1960s that caused them to raise their minimum level to 500. From what limited information I could find on the internet, there was an antibiotic that caused a B12 deficiency. Most likely a large number of people were severely affected, resulting in raising the low cutoff value. I have read that there are very few instances of Alzheimer’s in Japan, though their diet is quite different from the US diet so there may be other factors involved, and not just B12 levels.
We do know there are many instances of people getting neurological damage due to the current low cutoff (myself included). It is a major undertaking to change this across the US in all medical organizations, change happens slowly in medicine. Some labs are now including notices in reports where measured B12 is in the gray area of 200 – 450 pg/mL.
What units was your B12 measured in? If pg/mL (US) or the equivalent ng/L (UK), then your B12 was very low. If it was pmol/L then not quite as bad (cutoff of 200 pg/mL = 147 pmol/L). Was your MMA tested? An elevated MMA value can back up a B12 deficiency. Were you tested for pernicious anemia? If not, to get any of these tests you may have to stop taking B12 for a period of time which you may not want to do. Don’t bother getting your B12 tested again while supplementing as it will be high. Some doctors try to use this as evidence of being “cured” but if you have pernicious anemia your B12 levels will eventually fall again.
Serum B12 is the total of active B12 available to cells plus inactive B12. Perhaps you have a larger percentage of active B12, so even the overall number is low your cells are still getting the active B12 they need. In the UK there is a test to measure active B12 but it is not available in the US from what I can tell.
EILEEN A SMYTHE says
Tracy – what tests should I be having to diagnose non-absorption of B12. My serum B12 was tested at 175 and I was given 7 loading doses over a period of just over two weeks just before Christmas 2015. I was then offered injections every three months. I believe I have peripheral neuropathy in my feet which seemed to improve after the first week, and so, following advice gained in my research on the internet to follow the clinical symptoms to prevent further nerve damage, I asked for injections every other day ‘until my symptoms improved (not stopped improving – as my doctor quoted me as requesting when she discontinued these after only three injections). I was given three more ‘every-other-day’ injections which were stopped after my doctor had consulted colleages. After insisting on the ‘proper treatment’ whilst waiting for a (now promised) referral to a neurologist I was given permission for a further course of injections but only managed to get one before they were again discontinued after my doctor had consulted a haematologist at the local hospital. Last week I spoke to another doctor in the practice and, after further lengthy discussion along the same lines, I have been offered another three injections as ‘an experiment’ – presumably to see if they ‘work’ again …. I did tell her that my doctor had told me that she was ‘at the limit of her expertise’, this after she had pointed out that my B12 now tested normal at 2,000 (UK) but had then agreed (eventually) with me that this was only to be expected after I had received so many B12 injections! My intrinsic factor was tested as was folate and iron, kidney and liver function plus a full blood count but only after the loading doses and at my request (I had been wildly scrabbling around for any information at that point as I was desperate but now I know that these should have been done prior to any treatment). All came back marked ‘no action required’. I have rheumatoid arthritis (10mg steroids daily plus Leflumonide), osteoarthritis, diabetes (Methotrexate), under-active thyroid, asthma and COPD, high blood pressure (is it any wonder???), and have been taking Lansoprazole for a number of years. I am presently being investigated for breathing problems. I have been tested for an impaired immune system with an initial reading of 2.8 and after testing of 4.6 which apparently is acceptable as being on the way up (to 6). Any advice warmly welcomed
Mary Gannon says
Chris,
I just ordered B12 supplements because I just found out I am deficient. What I don’t understand is for how long I have to supplement. Is that forever or until my B12 is higher? What is the rule of thumb for stopping taking vitamins? Thank you
Tracy says
Mary,
You need to find out the cause of your B12 deficiency. You should be tested for pernicious anemia before taking any B12. I’d be cautious about getting this tested after starting on B12 as it can interfere with the test results.
Do you have any of these other B12 deficiency risks: vegetarian/vegan, used PPIs or H2 blockers, take Metformin, had nitrous oxide anesthesia for surgery or dental work, gastric surgery?
If you have pernicious anemia you will need treatment for life.
AnnF says
How many micrograms are in the tablets and are they dissolved under your tongue?
Rule of thumb is, you are on them for life. If you reach your mark and stop taking them, two things can happen, your levels will stay the same, as far as you know between doctor visits, and of course, it depends on what your doctor considers the right level, or, your levels can go down. Believe me, it’s far better to take b12 for life than to chance having the things happen to you that can happen to you when it’s too low. The pills are extremely safe. Don’ t chance it.
gaurav says
hi
I am having severe vitamin b12 deficiency.(167)
my doctor prescribed me cyanocobalamin (vitcofol).
but i would like to take methylcobalamin instead.
Is it ok.
also can you tell me how to self inject methylcobalamin by syringe.
thanks in advance.
Michael Lim says
I did a little researcg on this before and this is what I understand: If you have a high concentration of mercury in your system, methylcobalamin isn’t advisable. This will react with mercury and produce methyl mercury, which is worse as it is more reactive biologically. Perhaps someone else can shed more light on this.
Frank says
There are loads of sources of the methyl group, almost all of them in higher concentrations than you’ll get from MeCobalamin. 1000ug of MeCB will produce just 11ug of methyl radicals. That’s about one thousandth the amount of methyl in a glss of red wine.
Brandon says
You could try Hydroxocobalamin. It doesn’t add methyl groups but is, as i understand, easily converted into the active b12s methylcobalamin and adenosylcobalamin when and where it is needed. It is actually said to “eat up” exess methyl groups. I tried methylcobalamin and I had awful symptoms, OCD and anxiety went through the roof.
Melissaolivo says
Hi Brandon,
I have had issues of fast heart rate, insomnia, overwhelming energy since my first b12 shot, it’s been month and a half, did ur anxiety side effects go away ? How long? I had similar issues from supplement dunno why I let dr give me the shot. Thanks Melissa
Terry Chattsworth says
Hi, Chris – thanks for writing such an important article. I only wish I’d seen it in 2011 when you first published it! For the last 7 years or so, I struggled with many symptoms of an undiagnosed B12 deficiency. In fact, I may have been low in B12 most of my life.
It reached a crisis level a month ago, and by sheer luck I was able to diagnose it, then confirm via an MMA test at my doctor showing a reading of 340. Details of my story are here:
http://ghn.thegraychannel.com/uncategorized/my-sobering-wake-up-call-b12-deficiency/
Neurological symptoms for me, unfortunately, are severe, and while I’ve recovered some, after 3 weeks of supplementation with oral methylcobalamin, 1 mg per day, heavy fatigue is still with me, and my doctor has very little advice for how to proceed.
I would love it if you could write a follow-up article that focuses on the best approaches to recovery. It’s not clear if taking >1 mg methylcobalamin is necessary to heal long term neurological damage, MTHFR gene mutations add more layers of confusion for the newly initiated, and since this truly is an epidemic, that our doctors usually know very little about, we look to people like yourself to continue speaking out and taking the lead.
Thanks again.
TC
AnnF says
Hi Terry,
Three weeks isn’t that long at all, so stick with it. If you are taking sublinguals, you have to seriously increase your dose. I take 10,000mcg, or 10mg a day. I also take Vitamin D, just added B2, iron, zinc, magnesium, a multi, and B complex.
I knew there was something wrong in my 30s when everything seemed to be getting just to much and was always tired. Symptoms kept piling. The one day I went to the doctor for a cough, and he kind of knee-jerk diagnosed me with acid reflux and prescribed the heavy duty acid blockers an antacids. I didn’t think that was it, so I went online and looked up something like problems with taking antacids for a long time. One of the artcles that popped up was “Antacids Ruined My Life”, where tge author described her B12 deficiency, and there were ALL The symptoms I was experiencing right down to the sore tongue. Symptoms that I did tell my doctor about. She just dismissed them, seemed miffed that I had seen other doctors, and upped my prescription of Amlodipine for my admittedly VERY high blood pressure.
Anyway, it took about a month for some of my symptoms to go away, but after three years, and adding the other vitamins, I still get very tired. I feel a lot better, but I still go from general to heavy duty fatigue.
I think it would help if I exercised, but I now have asthma, brought on, I am pretty sure, by the Amlodipine I took for my HBP.
I meant to explain more than complain. My advice, seriously up the B12 dosage and add the vitamins I wrote down.
Good Luck
Johnny says
What nuero symptoms do you experience
Terry Chattsworth says
I really appreciate this article, Chris. I’ve been struggling with the symptoms of B12 deficiency since the late 1990s, didn’t realize it – and was never tested by any doctor because they assumed a meat-eater wouldn’t require B12 supplementation.
1 month ago my symptoms reached a crisis point, and I was luckily able to make my own diagnosis, then follow up tests with my doctor confirmed it: an MMA test of 340.
Unfortunately my neurological problems became advanced enough in recent months that I may not fully recover. I’ve done 3 weeks of supplementation and while much has improved, heavy fatigue has not. More detail on my story can be found here:
http://ghn.thegraychannel.com/uncategorized/my-sobering-wake-up-call-b12-deficiency/
Diagnosis is only half the battle. I’d love it if you could do an update on your B12 article that focuses on approaches to recovery. The MTHFR gene mutation and other variables make deciphering and applying protocols really confusing, and since B12 deficiency really is an epidemic that most of our conventional doctors don’t include in their workups, we look to people like you, Chris, to lead the way.
Thanks again!
TC
divya says
Hello chris
I have been suffering from hair fall problem since7-8 years. 3 years ago i was diagnosed with iron deficiency. it was 0.7(too low). I started with medications and thought it is the end of the problem but last year (august 2014)along with hair fall a lot of problems such as fatigue,weight loss, improper digestion, farting,weakness engulfed me. It was b12 deficiency(130 pg/ml) i started getting b12 shots and december 2014 all my problems were solved. But from the past 2 months again weight loss, hair fall, weakness, digestive issues(i dont feel like eating anything), gas have started. in 2014 i also had endoscopy done it showed chronic gastritis. What should i do? please help
Mike S. says
@Divya, Are you still on B12 shots? If you don’t address the reason why you became deficient in the first place, you will become deficient again without constant supplementation.
The iron issue along with B12 may indicate some other problem such as low stomach acid (achlorhydria) or gut dysbiosis interfering with absorption of nutriets. Chris has a lot of info on this site about gut issues.
divya says
Yes I have the same symptoms again. Rather more this time. Gastro issues are there. I am not able to eat anything. If i eat anything i have gas, bloating and feeling like vomitting
Pankaj Arora says
Hi Divya,
For the last one month, i started developing symptoms of little dizziness and unsteady gait. First i thought its related to Inner Ear and thats why i saw a ENT specialist, he told that it might be related to inner ear inflammation and asked me to wait and watch without prescribing any medicines.
But the situation remained the same and fatigue also started groping me. I decided to see an experienced neurologist and did CT Scan as well, it came fine.
The neurologist immediately asked me to get the thyroid and b12 levels checked. The thyroid came normal but my b12 level was 229 and according the neurologist, if the level is below 500, i should get started with b12 injections.
I had my first injection yesterday evening and i am hoping my symptoms would go in the near future.
The cause of b12 deficiency according to the doctor is the long term use of Proton Pump Inhibitors (nexpro,parit,acilog etc.) for my acute gastritis.
Thought to share with you as you have very similar symptoms and please suggest anything that would help me get rid of these uneasy symptoms.
AnnF says
Hi Pankaj,
My steadiness was off before the b12, and the b12 helped, but what really did the trick was also taking Magnesium and D3. Try adding these to your diet. Also, drink Bragg’s Unfiltered Apple Cider Vinegar, a teaspoon in a cup of warmish water with some raw honey in it.
I would definitely go to see an Endocrinologist and have your Thyroid checked again.
For several reasons, the main one being that I am lightheaded from trying to breathe because of asthma I have developed, I have started taking Meclizine, and it really helps. You can get a prescription for it, or buy Dramamine NON-DROWSY ( the only one with meclizine is the non-drowsy one). Despite what Dramamine says, it does make you very drowsy, so be careful. I haven’ t taken it every day, just one pill a day as needed. I have had an earache the last few days that goes down my neck and hurts my gums, jaw, and all the teeth on that side. Unable to eat too well, I became nauseous and dizzy. And you know how it is when you are nauseous because you haven’t eaten., the thought of eating makes it even worse. So, the other night, I took one before bed, and in the morning, I didn’t feel lightheaded, and I didn’t feel nauseous! I ran to eat whatever I could find — anything small and soft, that is.
I hope some of these suggestions help.
Vatsla says
Hi.. I had been finding myself V tired irritated and have been having mood swings. All the time I feel lightheaded and anxiety could take over me anytime. M drained off my energy. Since a few days I hv been having the same type of pain what u had lyk pain in gums jaw n ear.
Hv my thyroid function tests done, reports r in normal range
Pain is sharp, heavy,radiating and my teeth r xtremely sensitive on that side,no sinusitis no cavities
I hv a long long history to go. There’s tingling in my fingers and toes tips, hv greying of hairs with hairfall, nails hv become brittle..oh god!! Never tried to jot down whatever I had been feeling
There’s constant fatigue present..nauseous in morning, lack of coordination bit of.. And headaches too take over for no reason..
Ny of u had such symptoms Pl tell n guide me through.. Suggestions r welcome
Divya says
Hello Pankaj
I have started taking apple cidar vinegar and that has given a lot of relief to my stomach. I have even started taking as much acid i can take in the form of lemon in ginger tea,pickles or tamarind. It has really helped. The only problem left is oily scalp, skin and hair fall. I am taking b12 shots after one month.lets see. I am waiting.
AnnF says
Hi Divya,
Go to an endocrinologist. It could be your thyroid. I have to make an appointment myself. My pulmonologist did a test and it appears I have an overactive thyroid. I knew something was up because I lost 25 pounds in two months without trying. Before I started to lose the weight, though, I had a stomach virus for about a month. The symptoms are the same for virus and thyroid trouble, but I think, for me, it was the virus that caused the thyroid trouble, and not the thyroid trouble making me ill. Since they both have similar symptoms, and many people with low B12, particularly pernicious anemia, have some kind of thyroid trouble, I would definitely have it checked out.
FYI. Vitamins can really upset your stomach, too — nausea, vomiting, gas, lightheadedness — if you take them at the wrong time of the day and on an empty stomach. Last month, I started taking ground clove capsules to settle my stomach. I have always felt queasy, and they stopped making the clove gum that used to help, so I tried the capsules. They gave me such gas that the odor kept waking me up! Now that’s some heavy duty gas! Just so you know, it could be something you are eating or taking.
Also, try Bragg’s Apple Cider Vinegar, one teaspoon in a warmish cup of water with some raw honey. And stop taking those stomach pills if you still are taking them! Lower the dose week by week.
Divya says
Hi Chris
I was having problem of hair loss since 8-9 years. I tried many things but nothing worked. Three years ago i was diagnosed with iron deficiency. My ferritin was 0.7(too low). Last year in august 2014 i was diagnosed with vitamin b12 deficiency(pg/ml), vitamin d was also less. I was on bed for almost 2 months with b12 shots. My digestive issues and hair fall got completely solved in december. I am again experiencing a lot off hair fall,weakness, weightloss, poor digestion, farting, burbs(i even dont feel like eating anything). I had endoscopy also done last year. It showed gastritis. i dont have wheat allergy. What should i do? please help
Gabi says
This is kind of the opposite situation, but have not been able to find info on your webite for it. My B12 readings on my last blood workup was extremely high. I’ve been told that having B12 Elevated is just as bad as having a dificiency. What could be causing my B12 to be High, other than when I was taking B12 supplements, but I had stopped for almost 2 months before my last blood workup.
Is there anything I can do to bring down the HIGH B12 in my blood? If so, can you share what that might be?
thank you
Lynn_M says
Gabi,
Vitamin B12 is stored in the body for some time – I’ve read as much as several years. However, because it is water-soluble and readily excreted, supplementation will not cause high B12 levels in the blood.
According to the Mayo Medical Laboratories website, many conditions other than Vitamin B12 supplementation are known to cause an increase or decrease in the serum vitamin B12 concentration including:
Increased Serum B12
Decreased Serum B12
Ingestion of vitamin C
Pregnancy
Ingestion of estrogens
Aspirin
Ingestion of vitamin A
Anticonvulsants
Hepatocellular injury
Colchicine
Myeloproliferative disorder
Ethanol ingestion
Also, see http://www.medicaldaily.com/high-levels-vitamin-b12-may-be-linked-increased-cancer-risk-263123.
Lynn_M says
I clicked enter too soon – this is the correct version:
According to the Mayo Medical Laboratories website, many conditions other than Vitamin B12 supplementation are known to cause an increase in the serum vitamin B12 concentration including:
Ingestion of vitamin C
Pregnancy
Ingestion of estrogens
Aspirin
Ingestion of vitamin A
Anticonvulsants
Hepatocellular injury
Colchicine
Myeloproliferative disorder
Ethanol ingestion
Maureen says
Hi Gabi,
I just stumbled on this website and your post caught my eye. I put the same response in to another person, but will attach it here as well for you. I, too, had high serum levels of B12 without supplements. I am not a vegetarian. I had also been on PPIs for many years. They were looking at B12 because I had a long history of fatigue and ‘brain fog’. My levels came back more than 25% above the upper limit. Dr said ‘we only worry if it is low’. It really bothered me, and awhile later I saw a nutritionist who recommended intracellular micronutrient testing. B12 levels were deficient intracellularly. I was found to be homozygous for the MTHFR a1298c polymorphism, which presumably affected my ability to get B12 out of my bloodstream and into my cells. I Have been supplementing daily with 1000 mcg of sublingual methylcobalamin and have seen noticeable improvement. So, even ‘high’ levels of B12 in your blood may be misleading. I have lots of things wrong with me – all stemming from a 20 history of RA and consequent treatment with steroids and other meds, but have found many approaches that have helped improve well-being and this was definitely one of them.
Babs says
I too have high B12 with doctors that don’t think it’s a big deal. What type of nutritionist or practitioner did you see for the discovery of MTHFR? I have suspected this, but not sure who can help me figure this out. I have joint and muscle problems for the last 3 years, with no doctors able to figure it out.
Maureen says
Hi Babs, sorry for delay in responding. I went to a nutritionist who works in the Integrated Medicine Dept at a local hospital. I kept probing around why my B12 would be high. After a while she suggested a test of cellular micronutrients. (As opposed to serum/blood levels.) Their office used Spectracell Labs. It cost $190; insurance did not cover. I think it was the best money I ever spent. Results included MTHFR status as well as a number of micronutrients. The cellular B12 was “deficient” which was in contrast to serum levels, which were above normal. A couple of other micronutrients were also “deficient” and about a dozen were “borderline”. I have used the results to do targeted replacement. I feel the best I have in years. I have not yet had the test repeated, but plan to do so in the fall.
Stephen says
What is used for the intracellular molecular B12 test? I gather it is not blood.
Maureem says
Stephen, I have not checked back on this site for quite awhile so just getting your question now. Hope it’s not too late to respond.
The micronutrient testing is a blood test but they apparently use the white blood cells to look at micronutrients. The lab was Spectracell.
Robert says
Another good reason to enjoy that steak!
Michael R says
I have been having issues with my stomach for years being told it is gastritis, then diverticulitis, then colitis had an expensive test done that said it was inclusive but indicated some form of inflammatory bowel disease however all the blood work and stool test and biopsies that were done during an endoscopy and colonoscopy all came back with nothing but i am in constant pain in my abdomen my stomach swells to where i look pregnant at times I can be 10 to 15 pounds heavier in the evenings then i was in the morning and another dr just happen to run test and said my b-12 was low 212 and vitamin d was low and testosterone was 101 for a 47 yr old man. Could the b-12 be causing my stomach issues the gastro dr is wanting to send me to another dr for a second opinion or more testing.
Tracy says
Michael, you didn’t mention whether you have been taking any meds for your stomach problems. If you have been taking PPIs or H2 blockers, they deplete B12 because they suppress the stomach acid that is part of the system used by your body to extract B12 from your food. If you are a vegetarian or vegan, unless you have been supplementing then you can have low B12.
You need to find out the cause of your B12 deficiency. You should get tested for pernicious anemia, which results in little/no stomach acid. PA can run in families so let your doctor know if other members of your family have had it.
The symptoms of insufficient stomach acid are similar to too much acid. Most people who are older don’t have enough (decreases with age). The drug companies have been misleading the public about this for years. With the availability of PPIs and H2 blockers over the counter, it’s too easy for people to find themselves in serious trouble after taking them long term. These drugs should only be taken for a few weeks.
Traditional Western doctors are using a minimum B12 that is far too low, typically 200 pg/mL. According to Sally Pacholok in her book “Could It Be B12?” the gray area of 200 -450 pg/mL is where neurological symptoms are known to occur. When in this range, particularly if you are having symptoms, you need to get treatment.
After you start treatment or supplementing, your serum B12 will greatly increase and any future B12 tests will be skewed. You must stop the B12 for 6 – 8 weeks before testing.
Tanya says
Michael ..
People can have gastrointestinal symptoms with low B12 and low Vitamin D. Yes, it can affect your tummy. Low B12 can reduce the production of thyroid hormones. Your Thyroid also affects your whole body when low. When mine was low I had bad acid with acid reflux. I kept Tums in business. Now that all my levels are in the normal range those symptoms are gone. As we get older many people become milk intolerance and that can make your tummy hurt, swell, diarrhea and gas. So many things can cause your symptoms .. gallbladder conditions, food allergies, Vitamin deficiency, certain medications. When you get your levels back in order if the deficiency is the cause things will improve. During the mean time, I would see the other doctor for a second opinion and have more testing done. Have you been checked for a gallbladder condition or gallstones? That could be another reason your doctor wants you to be seen by another doctor. I’d rather be safe than sorry when it comes to my health. Rule out as much as you can. You didn’t state if your doctor was giving you B12 shots or … Make sure to take a B12 Sublingual not the tablet, if your taking B12 by mouth. Keep us posted how you’re doing.
Jean says
I just turned 60 and I am a very active woman. A couple of months ago I got a UTI and from that point on my health has gone down hill. Shortly after taking ciproflaxin for the UTI I started getting back pain that would start in lower back and then move to shoulder blades, neck. Then a few weeks ago, I starting getting pins and needles in fingers, legs and toes. I had heart palpitations and shortness of breath. Went back to doctor and wanted me to see a neurologist. I finally talked him into giving me blood tests and it came back that I wasVitamin B 12 deficient. He told me I would have to give myself injections everyday for a week, then once a week for a month and then once a month after that. He still wants me to see a neurologist because he is insistent that I have a nerve problem. I have just made an appt. with a neurologist but I am just wondering if it could be the Vitamin B 12 deficiency. The pain and the pins and needles has subsided somewhat but I still have pain. Has anybody else have the same symptoms.
Lynn_M says
Jean,
Have you looked up the side effects of ciproflaxin? Check here http://www.drugs.com/sfx/ciprofloxacin-side-effects.html
Lynn_M says
Jean, have you looked up the side effects of ciproflaxin? Check here http://www. drugs. com/sfx/ciprofloxacin-side-effects.html
Tracy says
Jean,
Yes, B12 deficiency can cause nerve pain, particularly when is in an advanced stage. Last fall I had shooting pains up my legs. Felt like sciatica but not always constant like typical sciatica.
Two years before that I had a disc bulge which caused terrible sciatic pain, and odd back pains that would come and go. Recovery took months, should have only been 6 or 8 weeks. I believe I was becoming B12 deficient then, which caused those symptoms.
My pins and needles feeling has subsided. When my B12 gets low then it comes back again. I still have a lot of pain in my feet, because I had foot pain well over a year and foot surgery (misdiagnosed as a neuroma). It’s been a year since my surgery and I still have nerve problems in my feet.
I sincerely hope your foot pain subsides. I’ve read in Sally Pacholok’s book “Could It Be B12?” that if you’ve had it 3 months or less there’s a good chance it will go away. I recommend that you buy the book, it’s available on Amazon.
I suggest you continue treating your B12 deficiency and also keep your neurologist appointment. There are tests your neurologist can do to determine if you’ve had nerve damage.
Good luck in your recovery!
Ren says
Jean, Cipro has many side effects that sound like what you’re experiencing. It is in the fluoroquinolone class of antibiotics, along with Levaquin, Floxin and Avelox. Google “fluoroquinolone toxicity syndrome” to find out more. There is also a site, floxiehope.com for help with getting better.
Joyce Kazanjian says
For seven years I was experiencing off and on, hands and feet tingling, burning, pain, difficulty walking, extreme fatigue and depression. It then started where I had extreme difficulty getting dressed, had trouble feeding myself, could not write or hold a pen. Bending my neck sent electric shocks thru my body. Went to the hospital for MS testing. MRI, spinal tap, brain scan. After more testing, one Dr. checked my B12 level, it was 80. I spent 10 days in the hospital and 10 days in rehab. They were not sure if I would recover. Left untreated, B12 deficiency can cause permanent brain damage. I was lucky, everything reversed. Maybe if B12 methylcobalamin supplements were given early on, we might be able to prevent MS and other brain and nerve related diseases.
If that one Dr. didn’t check my B12 level,I would have been diagnosed with MS, because the symptoms are the same.
B12 is vital for our health. It helps make DNA & RNA, your red blood cells.
Helps with Depression,Dementia,Sleep Disorders.
Protects &a rebuilds the Myelin sheath covering your nerve fibers.
Slows brain shrinkage up to 80%.
Lowers Homocysteine levels associated with heart disease.
If low levels are left unchecked, brain damage will occur and can become permanent.
Helps with age related macular degeneration.
By supplementing with sublingual Methylcobalmin B12 around 40 or 50 years of age, we could help prevent problems before they start.
Judy says
Hi Joyce
Ten years ago I was like you experiencing health problems and my doctor tested me for MS and had a spinal tap, MRI’s, blood tests, etc. Luckily my doctor tested me for B12 and my level was 41. I was not in the hospital though, he started me on cyanocabalim injections.My level eventually went up but my symptoms didn’t improve a whole lot. Just a few years ago I found on a website about transdermal of B12 (methylcobalamin) oil. I’ve been using the oil and my MMA has improved. But I think since it took the doctors to find out what was wrong with me, I may have permanent nerve damage, especially in my legs and feet. I’ve done so much physical therapy and aquatic therapy but still my gait, numbness, spacticity, and severe stiffness is still there. I think it will take some time for my nerves to regenerate.
Tracy says
Hi Joyce,
So glad everything reversed for you. Do you know the reason you were deficient? Were you tested for pernicious anemia? I’ve got permanent nerve damage as a result of my deficiency which was caused by pernicious anemia.
Please tell everyone you know about the terrible consequences of being B12 deficient since you experienced them firsthand. Maybe if enough people pester their doctors to have their B12 tested annually, doctors will wake up to the fact that there is something serious going on and that they should automatically order this test for patients who complain of fatigue, brain fog, hair loss, and/or weird pains. As it is now, thousands of dollars are spent unnecessarily on expensive MRI and CT tests as well as doctor visits and drugs. Why the medical community hasn’t yet woken up to this problem just dumbfounds me. (Actually doctors knew more about it in the 1950s when B12 began being manufactured than they do now).
Judy says
Hi Tracy,
Amen to that! I totally agree with you about getting the word out about B12 deficiency. I also have permanent nerve damage. In the beginning, my doctors put me thru agonizing tests, costly, and after 2 years a simple blood test discovered my B12 level was 41. I still have specificity, severe stiffness and bad gait. I guess it could be worse.
Judy says
Tracy,
Oops! Sorry, typo, it’s spasticity in my comment.
Terri says
Ciprofloxin is a fluorinated antibiotic. Do some research on prescription drugs containing fluoride and you will find tons of information about the dangerous side effects of these types of drugs. I will not take them. They can cause serious reactions and side effects. When asked about allergies, I list all fluorinated drugs.
Taura says
I was just tested and have what my doctor considers a ‘normal’ level of B12 at 228. I feel it is too low. Is it too low?? It was 167 two years ago (summer 2013) and I had several injections which brought it up to around 1000, so it’s dropped quite a bit since then.
What can I do because my doctor won’t prescribe injections for me?
Is there a way to get Methylcobalamin into my system without injecting it? And is it available to buy online somewhere?
Thank you!
Tracy says
Taura, if you are in the US or UK then 228 is in the gray area of 200 – 450 pg/mL where neurological symptoms can appear. You probably won’t find a regular doctor that will treat you as they typically use a very low cutoff of 200 (some even use lower). A naturopathic doctor is likely to be more willing to treat you. Once you start supplementing then any future B12 tests will be skewed unless you stop taking B12 for 6 – 8 weeks beforehand.
You can buy oral methylcobalamin on Amazon. If you have pernicious anemia your GI system won’t absorb it properly so get sublinguals. It goes under your tongue so it dissolves slowly into the blood vessels there. If you have a health food or health supplement store nearby, you should be able to get some there.
Look carefully at the label to make sure you are getting methylcobalamin. You’ll also find cyanocobalamin and hydroxocobalamin. I’ve found the Jarrow brand to be of a reliable strength. Read the reviews if you are concerned about additives.
tnt3266 says
Your Doctor is full of crap. Your numbers are really low. My numbers were at 217 with neurological symptoms. My endocrinologist recommend injections for a few months, which I took. Then he changed me over to a B12 Sublingual 1000 mcg daily. A endocrinologist is the person to seek treatment for this deficiency. I use Nature’s Bounty B12 Sublingual 1000mcg and have been on it for three years now. I’ve tried other brands, but Nature’s Bounty I found to provide supplements of unsurpassed quality and value without the added junk or adverse reactions. The starting standard dose is Sublingual 1000 mcg daily, under your tongue. Take SUBLINGUAL ONLY! Takes up to 2 months to get your levels back into a normal range. Did your doctor test your Thyroid, Vitamin D, etc? Hope you feel better soon.
Taura says
tnt3266
I agree that they are too low. I’ve been experiencing memory issues and low energy lately. I’m only 37 years old so it’s concerning for me.
I am currently being tested for high blood pressure (It’s sitting around 145/99) and the doc told me my Iron is low but I don’t know the number. I think I’m going to ask for all my numbers when I see him next.
I have none of the usual risk factors, I’m not overweight, I don’t smoke, I’m very active, diet is ok etc. So they are trying to pin down the cause (BC pills, heredeitary, or stress), then deal with the iron issue.
I do have a history of gastro issues like inflamed intestines. I think it’s all related somehow.
For now I’ve found a sublingual B12 by SunForce – it’s methylcobalamine so I’m hoping it provides some results.
Thanks for the advice 🙂
Tracy says
I highly recommend that you purchase the book “Could It Be B12? An Epidemic of Misdiagnosis” by Sally Pacholok and Jeffrey Stuart. They are two medical professionals who recognized this is a huge problem and are making it their mission to educate doctors and the public about B12 deficiency. It’s available on amazon.
I came across it when searching for answers after my B12D diagnosis last fall. It is stunning how ignorant most doctors are about this very serious problem.
Also there are online message boards you can join, such as the Facebook Pernicious Anemia/B12 Deficiency support group and the UK-based Pernicious Anemia Society.
Lynn_M says
Taura,
A fairly new product that is even more effective than sublingual formulations is a transdermal B12 oil available from b12oil.com. They have several B12 products, including methylcobalamin, adenosylcobalamin, and hydroxylcobalamin, as well as other formulations.
The transdermal application looks like it is comparable to using subcutaneous B12 injections. I have used the adeno/methyl B12 oil for over two years now, and my MMA test shows I’m getting adequate B12.
Taura says
Lynn_M
Thanks for the tip! I found some sublingual B-12 methylcobalamin and I’ve been using that for a few days. I will definitely look into the trandermal oil though!
I can buy injectable B12 form the drugstores but I am not comfortable giving myself a shot which is why I’m looking for alternative options.
Lynn_M says
Taura,
A fairly new product that is even more effective than sublingual formulations is a transdermal B12 oil available from b12oil.com. They have several B12 products, including methylcobalamin, adenosylcobalamin, and hydroxylcobalamin, as well as other formulations.
The transdermal application looks like it is comparable in effectiveness to using subcutaneous B12 injections. I have used the adeno/methyl B12 oil for over two years now, and my MMA test shows I’m getting adequate B12.
Jeanne Semones says
My Autoimmune Vitamin B12 Deficiency was diagnosed 2007, but inadequately treated for over a year, which had a disastrous impact on the quality of my life and I’m still dealing with some of the negative consequences. As a physician, I could easily access medical literature on the subject, and soon became frustrated and demoralized by medical care providers who were not as well informed and were not amenable to my bringing them up to speed. I was significantly incapacitated by my illness and had to work far too hard advocating for myself in order to finally receive adequate treatment. Currently, I am very concerned that standard dosing regimens are insufficient to achieve acceptable outcomes for these patients, and patients are still not adequately informed about the many potential comorbid medical issues that may be ignored, and thus hampering recovery. In my experience, providers are definitely not attending to quality of life indicators in order to measure the effectiveness of disease management. I am interested in connecting with advocacy groups and finding venues for better educating physicians and the public with the goal of addressing the importance of early detection and improving quality of care for this group patients at high risk for suffering permanent disability, as well as contributing significantly to rising costs of medical care and elder care in this country that is still under recognizing and poorly responding to the problem.
Tracy says
Jeanne, I am so happy to learn you are a physician willing to take an advocacy role in educating doctors and the public about this very serious public health problem. I am a member of some online groups that you may wish to join and monitor as there is much discussion there about late diagnosis and the woefully inadequate treatment of B12D.
The two groups I’ve found to be most active are the UK-based Pernicious Anemia Society, and the Pernicious Anemia/B12 Deficiency Support Group on Facebook. There are members from all over the world who post on these groups.
Jeanne Semones says
Tracy,
Thanks for the info. Will definitely check out.
Jeanne Semones says
Tracy,
Thank you for the info. Will check these out.
Tracy says
Jeanne, have you read the book by Sally Pacholok and Jeffrey Stuart, “Could It Be B12? An Epidemic of Misdiagnosis”? They are health professionals (RN and DO), Sally discovered she had pernicious anemia quite by accident while in nursing school. Perhaps you could join forces with them as they have made it their mission to educate doctors and the public. You may be able to get in touch with them by contacting the publisher of the book, the info is in one of the inside cover pages.
Early this year a movie was released about Sally’s life (titled “Sally Pacholok”, IMDb shows 4 stars for it), but I don’t think it is in wide distribution. If that movie got the level of attention that Erin Brockovich did, it would make a huge difference in the level of awareness of this devastating problem.
Jeanne Semones says
Tracy,
No, I haven’t read the book, but will. I’m afraid I’ve gotten side-tracked by quite a few of those comorbid disorders I mentioned, after my B12D was finally diagnosed and treated. But I continue to feel very much alone with the management of my B12D. I’ve lived with the illness and studied my own course long enough to know that I function best with a serum B12 level in the high normal range. Only one of my care providers has had the experience and knowledge to understand why that is the case, while others have consistently sought to debate the issue with me. It’s quite tiresome. I also have Vitamin D Deficiency, and under-treatment was, again, an issue. I have Celiac Disease, and still have to be ever-vigilant with my oral medications in order to maintain the necessary strict gluten free diet. I’ve accumulated a number of entirely unexpected diagnoses over recent years. I have been fortunate, so far, in that all my medical problems are fairly easily managed. I have not been fortunate, in that signs and symptoms of each medical problem presented and worsened, just to be ignored until an acute event occurred. I trained under Preventive Medicine and Continuing Care models. Acute medical events are best avoided. Current standards encourage them.
Tracy says
Jeanne,
Good to hear you are managing your medical problems, you are fortunate. I am disabled as a result of my very late B12D diagnosis. And I’m covered by the largest HMO in the western US, you’d think they’d know better! Just two years ago I was a very active and athletic 56 year old woman. Now I must use crutches or wheelchair outside the house and feel unwell all of the time. I have not been able to find or get a referral to a doctor within that HMO system who knows anything about B12D or PA. The doctors I’ve seen just want to hand out powerful scary drugs for my pain. Most meds I have been unable to tolerate as the PA has made my body hypersensitive. Why couldn’t they have figured out what was wrong before all this happened? I had a number of visits with several different doctors, I kept telling them something was wrong and my symptoms, but none of them figured it out. The state in which I live has such a low cap on medical malpractice awards it isn’t even worth pursuing a lawsuit, it’s even difficult to find lawyers who will touch it. A multi-million dollar lawsuit might have grabbed the HMO’s attention (and the headlines) and perhaps resulted in process improvements and more doctor awareness.
I agree, current medical practice is to wait for something catastrophic to happen rather than being proactive and figure out what is starting to go wrong. I think doctors in the 1950s were much more aware of B12D than the doctors today. To top it off, there are drugs often prescribed or available OTC that cause depletion of B12 resulting in increasing numbers of people at risk for serious, permanent neurological damage. Meanwhile, doctors continue to hand out antidepressants like candy.
Other issues with the current situation is B12 is not normally tested by traditional doctors, and the currently accepted normal cutoff is far too low. I think that a B12 test ought to become a standard part of the CBC test as we cannot rely on an elevated MCV to flag a potential deficiency (folic acid enrichment of flour masks this symptom). And as Sally mentions in her book, a B12 level of 200 – 450 pg/mL is the gray area where neurological damage is known to occur, so the lower cutoff needs to be raised to at least 400 pg/mL, at my HMO it is currently 200 pg/mL. When my B12 was finally tested it was 196, barely below the minimum, and I was in terrible shape neurologically by then. There does seem to be a wide variation in symptoms vs. B12 level among people so improvements in analytic test procedures as well as allowing physicians to treat by symptoms not just the numbers are also sorely needed.
Hope to see you on the FB or the PAS message boards!
paul says
Hello. I have been reading many posts here very recently and am amazed. It has been a revelation. I will keep my post as short and sweet as possible. I am 57 years old and have been in pretty good health all my life until recently. About a year and a half ago I started to notice pain in my feet after not being on them very long at all. Also noticed range of motion in my hands was decreasing and some loss of sensation in fingers which at the time I attributed to age related arthritis and long standing carpal tunnel. Approx. ten months ago severe neurological deficit started to manifest itself very insidiously. I now have severe paresthesia / hyperthesia in both hands with very restricted range of motion. Intermittent tingling involving various parts of my body especially my lower legs and feet. Periodic electrical zips/zaps. Itchiness.Cervical and lumbosacral spine pain. Myasthenia / myalgia / radiculopathy. Pain…. Pain… Pain… I am anemic and all my doctors never even mentioned the possibility of B12/Folate deficiency. Here are some of my labs:
RBC – 4.13 M/uL
MCV – 106 fL
MCH – 34.1 pg
B12 – 279 pg/ml
Folate – 24.13 ng/ml
I have been a long term user of both PPI’s and H-2 blockers. My paternal grand mother had P.A. which I informed my doctor of after being advised that I was anemic and not knowing at the time what P.A. even was. Still no mention of possible B12 connection. Well that’s my story so far. I dare not speculate on the next 1 1/2 yrs.
I think I am in pretty bad shape. Any seasoned veterans out there? I don’t quite know what to do. The best way to describe what is happening to me is it feels like all my sensory nerves are short circuiting. Any advice/info regarding all this would be very much appreciated. Many, many thanks.
Mike S. says
@paul – A B12 test result of 279 is very low. You have a B12 deficiency. If you want to work with your doctor, you should read Sally Pachalok’s book. Your best bet is to get shots (make sure you get methylcobalamin), because you’ll get more B12 into your system in less time.
If you want to go it alone, you should search Google for the “active B12 protocol”. Take sub-lingual tablets of methylcobalamin and try to keep them under your tongue as long as possible. Longer time in the mouth leads to better absorption. Anything you swallow is absorbed at a very low rate (which is why you have a deficiency). Some people report good results with transdermal B12, but the sub-linguals are cheaper.
You should get off the PPIs and H2 blockers, because they interfere with absorption of B12. This may not be easy. Many of those drugs leave you with terrible rebound reflux when you stop taking them. Good luck. There are dietary changes you can make to improve your situation. I don’t know details, but Google should help.
The good news is that many of your symptoms should improve with B12 shots or supplements. It may take some time before all the damage is reversed, but the prognosis is good… if you can convince your doctor to keep you on the shots long enough.
Tracy says
Paul, your story sounds sort of similar to mine with the foot neuropathy. So glad you found this when you did. Please DO NOT handle treating your B12 deficiency all on your own, you need to be under the care of your doctor and have it in your medical records. As you get treatment you’ll need tests to follow along how things are going, and you’ll need your doctor’s help for that.
Have you been tested for pernicious anemia yet? The tests aren’t always reliable but if the Intrinsic Factor Antibodies (IFAB) test is positive then you definitely have PA. The IFAB test can give a false negative, so the parietal cell antibody test is run. Your doctor should order both tests. Since PA runs in your family, it’s very important to get tested for PA as soon as possible BEFORE taking any B12. I have read that supplementing B12 can affect the antibodies tests and you want those results to be as accurate as possible. It is also a good idea to get MMA (methylmalonic acid) and Hcy (homocysteine) tests and these must be tested before B12 supplementation as they will drop back to normal levels very quickly after getting some B12. Elevated MMA is a marker for low B12 so it can back up your B12 deficiency. Elevated Hcy has several causes including low B12, and it is a cardiac and stroke risk (some researchers believe Hcy is more important than cholesterol levels for determining these risks). My doctor ran these tests on me two weeks after I started getting B12 shots and by then they were in normal range, so unfortunately I don’t know how bad my levels were but I bet my Hcy was sky high as I was in really bad shape. If your ferritin hasn’t been tested, you’ll need that checked too as you may need to supplement when you start getting B12.
Your folate is high, mine was too. That really confused my doctor (many who are deficient in B12 are also deficient in folate), but I think that when B12 is very deficient then folate elevates. Both are needed together and there is an excess of folate when there isn’t enough B12, so it builds up. For the B12 test, the US and UK typically use 200 pg/mL as the low cutoff for deficiency, but it is known that symptoms can appear within the low normal range of 200-450 pg/mL. But your MCV is very high, usually the normal range is something like 80-100 (MCV= mean corpuscular volume, the average size of red blood cells). Yours are very large, meaning your blood cells are what doctors call macrocytic. That is a definite sign of B12 deficiency. Even though your B12 is not below what doctors use as the normal range, your high MCV means you are deficient and you need treatment ASAP. The serum B12 test is a measure of active plus inactive B12 and some people may have a smaller proportion of active B12 even though the total is within normal range.
Mike S. is right, you need to get off of the PPIs and H-2 blockers but from what I have read it won’t be easy, work with your doctor on this. Search the internet and you’ll find stories from other people who have done this. I sincerely hope that you don’t have PA so that getting off of these drugs will restore your stomach. PA requires lifelong treatment and there are many other problems associated with it (higher stomach cancer risk, stomach and malabsorption problems, continuing fatigue, etc.). Sadly, doctors have been duped by Big Pharma into believing that stomach acid is a problem. The real problem is low stomach acid, which has similar symptoms. As people age, they typically produce less stomach acid, not more.
Not many doctors seem to be aware of this so you may need to find one in your area that is more knowledgeable. Severe B12 deficiency may require longer and more aggressive treatment than the standard formula most doctors go by (in the US it is 1000 mcg B12 shots of cyanocobalamin, every other day for a week, then once a week for a month, and once a month after that). In Sally’s book she recommends methylcobalamin every other day until there is no more improvement (rather than just a week). I personally have found that once a month isn’t enough and I need to supplement on my own in between.
There is a Facebook group for PA. You may benefit by joining the group as the members are very knowledgeable and supportive and it sounds like you need this right now. And you should get Sally Pacholok’s book “Could It Be B12? An Epidemic of Misdiagnosis”, it’s available on amazon, not very expensive (the price of most paperbacks).
Sandra says
Hi, my name is Sandra and I am 28 years old. I have been living in Berlin for almost a year and started having what I thought were sciatica symptoms for about a month now. I went to 2 hospitals and they said I was fine after they ran blood test. Until, I decided to go to an orthopedic. I told him my I haven’t really been the healthiest and was definitely drinking excessively and am not really a full vegetarian . He told me I didn’t have sciatica and that I was vitamin b deficient. After I took the vitamin b complex for a week, I felt like my old self again with now pains and was able to run around.. I messed up because friends were in town and I thought I could handle “partying” with them drank and guilty of doing some drugs. It wasn’t a lot, but was enough to make me feel the same again and also spark up a sinus infection.
I went back to my orthopedic doctor and I told him the truth and he made a vitamin b transfusion. It’s the second day and I still have tingling in my body especially my left leg and feel fatigued. I totally understand that I definitely messed up with my poor choices. And am super ready for a lifestyle change. I just would like to know if this permanent nerve damage, and if there is anything else I can take if I don’t get better. Or if the shot is better than the transfusion? i’m not sure yet how many milograms were put in me. But I am taking the vitamin b, magnesium, vitamin D and C, along with Calcium. I know I am a stupid kid, but in a way its a blessing in disguise showing me that I am not being good to myself by self destructive. Please help me. Thank you, God Bless.
Kimberly Miller says
I am going through some attacks formore than 4/years now each each month my body goes through a debilitating attack. Can not get b12 to absorb. Doctor does know what is wrong, worst starts a week before period fatigue blurred vision confusion then worsens right before inflammation breathing labored. Other blood test high MCV, MCH and Absolute Eosinophils. SymptomsMy symptoms inflammation all over (tight feeling, painful in areas of body I use more often). Bluured vision with a pressure and delay in eye (right), crawling skin every once in a while, inflammation, pain, confusion, mood changes, circulation issues, palpation in heart with instead tight feeling around throat, cystics on face, low testosterone and I take a compound for also still low and progesterone even though I take a compound and estrogen very high. I feel like my body is under attack I am no use to myself or family. I can nearly move or talk and the my period starts I get a some relief. The attacked are getting more severe. I am afraid I am getting worse and no one is helping me. I am getting worse. My body is not absorbing any b12, progesterone, testosterone.
Tracy says
Sounds like you already know you are B12 deficient. Are you getting large doses of B12? You may need injections, typically these are 1000 mcg (micrograms). Normal RDA for B12 is 2.5 mcg so you can see injections are a large dose. The amount of B12 in a multivitamin is not enough.
Since your eosinphils are high, get tested for parasites. Elevated eosinphils can be one of the signs. Parasites can rob your body of B12, so if you are getting lots then that could be where it is going.
Joe says
I am looking for a cause of the neuropathy in my feet. I am 50, have had the problem since 2012 and it is getting worse. In 2013 my homocystine level was 8. I have read that anything above 7 should be followed up with additional bloodwork. In 2014 my neurologist ordered bloodwork and my B12 level came back as 384. I didn’t know much about it and she just said it was fine. Even after I have been taking a multivitamin and B12 fairly religiously, my B12 level came back as 360 last month. I recall that my father had very bad neuropathy in his feet but he was not a diabetic. Also, my daughters B12 level came back as 304 and she is having nerve pain in her feet and hands as well as serious psychiatric symptoms. I have been reading a lot about people having problems with B12 levels under 400 and that the level should probably be above 500 to be safe. I think that I may have an inherited condition concerning how my body processes B12 that came from my father and was passed by me onto my daughter. I don’t think it is full blown pernicious anemia, but I don’t know. Any thoughts someone could share would be greatfully appreciated. If my neuropathy is from a B12 deficiency, any info as to whether or not and how long it might take the nerves to regenerate would also be helpful. Is the prognosis better since me and my daughter’s levels were above 300? Thanks!
Tracy says
Hi Joe, short answer to your question: get treatment ASAP as you are showing symptoms. You do need to get blood drawn for some tests before your first loading dose of B12, see below.
The long story: My neuropathy started in fall of 2013, developed into pain that was diagnosed as a neuroma (swollen nerve). It got so bad I could not sleep with anything covering my feet and had to ice my feet every afternoon. The podiatrist insisted I had neuromas so I opted for surgery in late July 2014 to remove one in my right foot. Two weeks later I sensed something wasn’t right and I got progressively more and more ill. 3-1/2 months went by before I was finally diagnosed with a B12 deficiency, by then my B12 was 196 and I had severe neurological symptoms (shooting pains in my legs, palpitations, personality changes, insomnia, and more). I’ve now been getting treatment for 9 months; unfortunately my diagnosis was delayed too long and I still have the neuropathy as well as other nerve problems, and am disabled as a result. I keep hoping for a miracle, in the meantime I’ve started taking a drug to try to calm my nerves as they went on a rampage as a result.
I highly recommend you buy the book by Sally Pacholok and Jeffrey Stuart, “Could It Be B12? An Epidemic of Misdiagnoses”, it’s available on amazon. In it they say the current low threshold for serum B12 of 200 pg/mL used in the US is way too low. The gray area is 200 – 450 and is where neurological symptoms are known to occur. You and your daughter are within that range and are clearly showing neurological symptoms so you need to find a doctor willing to start treatment. Traditional doctors are likely to balk as you are not below that low threshold, unless you find a really good one. Naturopathic doctors are typically more likely to start treatment.
The amount of B12 in a multivitamin is not enough to make much difference when you are deficient. The RDA is something like 2.5 mcg (micrograms). Treatment usually consists of a series of high dose 1000 mcg injections. Initially they are quite frequent to load up your system.
From what I’ve learned, the biggest impact on prognosis is how long you had symptoms before getting treatment. It’s generally felt that the damage is reversible if symptoms have occurred for 3 months or less. Nerves do heal, but they grow very slowly so it can take years.
Be sure to get a blood draw for methylmalonic acid (MMA), homocysteine (Hcy), intrinsic factor antibody, parietal antibody, folate, and ferritin tests BEFORE you start B12 treatment. A urinary MMA (uMMA) test is best if you can get one. MMA will likely be high if you are B12 deficient and can be used to confirm deficiency (some doctors may know this and start B12 shots even though you are not below the minimum). Hcy will likely also be high, it is associated with cardiac disease and strokes though when high is not specific to a B12 deficiency. After you start B12 injections, your MMA and Hcy should quickly drop back to normal levels. You need the antibody tests to check for pernicious anemia and these should also be done before your first injection as B12 can interfere with the results. It is important to know your ferritin level as when you start getting B12 injections your body will kick into gear making new blood cells and ferritin is needed for that, you may need to take an iron supplement. Folate works hand in hand with B12, and may need to be supplemented as well if it is low.
You may have MTHFR genetic mutations which can affect the processes in which B12 is involved. This is too complicated to go into right now other than to say you might want to get a genetic test as it takes a while to get the results. If you have a family history of Leber’s disease (affects the eyes) be sure to tell your doctor as the type of B12 traditional doctors use, cyanocobalamin, should not be given. There are other types of B12 available that should be used instead.
Good luck and I hope you both get treatment promptly.
Joe says
Thank you for the information Tracy. You were right about the MTHFR mutation. I am compound heterozygous for the two variants. As I understand it, MTHFR mutation can cause neuropathy in and of itself and the gene requires adequate B12 to function as well. With my B12 deficiency and MTHFR mutation, no wonder I have neuropathy.
AnnF says
Hi Joe,
Your daughter should also be taking B12. You both should also be taking D3 and Magnesium.
Have you been checked for Celiac? I believe that runs in families. Try to eat as organic as you can, and if you have the room, grow your own veggies. The more I read and hear, the more squeamish I am about our food supply. It doesn’t stop me from eating Taco Bell and then Peanut Chews, you understand, but at least I know that stuff is not supposed to be good for me.
Good Luck.
AnnF says
Does anyone else have trouble posting here? Overtime I go to post something, I get an error message that the site’s server is down, so I click the button that says to try a live version, then I hit the back button, and there is my post.
Today, when I add a post, and then try to add another, my first post is still in the comments section.
Is it me, or the site? Either way, it’s frustrating, especially the times when my post does not appear.
Tracy says
Ann, yes that happens to me when I post to this page, I just ignore the error. I think it might be due to so many comments attached to this particular page. This has got to be one of the most highly commented on pages Chris Kesser has on his blog.
Gerald Landry says
Joe, I don’t know if your still tracking this as there’s a 15 month spread since your question. Medications, chemical exposure and air pollution can cause neuropathy.
Ref: http://emedicine.medscape.com/article/1175276-overview
Posted earlier today; Chemically induced Neuropathy can be caused by medications, chemicals and air pollution.
Quote: Management
In addition to advising the patient to avoid the causative drug or occupational or environmental toxin, management of toxic neuropathy can include the following:
Ref: Toxic Neuropathy: Practice Essentials, Background, Pathophysiology
emedicine.medscape.com/article/1175276-overview
Feb 3, 2016 – Toxic neuropathy refers to neuropathy caused by drug ingestion, drug or chemical abuse, or industrial chemical exposure from the workplace …
Rose says
My tongue became swollen 10 months ago and my RBC count is 3.8, has been for years. I was given one B12 injection a week for 4 weeks in January then one a month since January. My tongue is still swollen and in fact tingles from time to time. I also take 6 to 8 doses of transdermal B12 daily. Am finding it impossible to take folic acid as I lack enough stomach acid. Nothing has changed. Totally fed up, have already changed my doctor and can’t do it again.
AnnF says
I didn’t have a swollen tongue, but I did have really red Geographic Tongue, which still comes and goes, but not so often, and not so bad. It used to go up to the roof of my mouth, and onto my tonsils.
Anyway, the b12 and the b complex, including folic acid did not help it that much. What helped was the D3 and the Magnesium.
Can’t you get a shot , a patch, or an oil with folic acid. How about taking it with orange juice, or Apple Cider Vinegar with the mother still in it mixed with water and unpasteurized honey? I haven’t been taking Bragg’s ACV for awhile because, after a month or so, uch, but it really makes me feel good.
I believe that you have to get the right combination of things in order for your body to work well. Many people tout honey and other bee products. Try adding some of them. I don’t remember the name of the Canadian company itself, but I subscribe to newsletter called “Bee Pollen Buzz”. If you Google it, it should pop up. Try getting something from there.
For you, and everybody, non-vitamin things that I think are helpful:
Soups and stews (even if you are vegan, use veggies)
Unfiltered Apple Cider Vinegar with the mother still in it
Cod Liver Oil — not just fish or Krill oil
Exercise — even if you walk for 3 minutes a day, that’s somthin more than nothin
Stretching — it helps unclog the Lymph system
Unfiltered and unpasturized bee products
If you are not vegan, Marrow — I am still up in the air about organ meats
I read a lot online and listen (tv) a lot, and know what works for me, and I filter out the phonies, so I am confident that the above can really help.
Judy says
About 10yrs. ago I started having numbness and tingling in my feet, tiredness, mouth ulcers. I went to so many doctors and had numerous MRI’s, lumbar puncture and bloodwork done. Two yrs, went by until a doctor found out about my situation and asked me to make an appt. With doing more bloodwork and this time testing my B-12, I have a B12 deficiency. My level was severely low at 41. He started me on a regimen of cynocobalamin shots and my level went up over the next months. Later, I started using a B12 nasal spray instead of shots. Well as my levels was very good, I still had numbness and tingling and my gait is terrible. Then I started using Transdermoil (methycobalamin) and although I have nerve damage, theres a slow process of nerve regereration happening. It may take a long time for my nerves to regenerate fully but I feel better using methylcobalamin oil rather than cynocobalamin. Doctors here just are not familiar with the knowledge of B12 deficiency and thats why I started doing research on B12 on the internet.
tom says
may be u take to much nuts (family of seeds etc ground nut, peanut, walnut etc) may cause uric acid problem usually if u stop taking uric acid foods this problem may go away after 6 months
Karen says
I was diagnosed as low B-12 four years ago (using a MMA test) and started giving myself B-12 shots bi-weekly until I was in a good range and then monthly. My new PCP states that my B-12 level is normal (regular B-12 blood test) and has taken me off shots. I am starting to get the symptoms again of low B-12 (migraines, foggy feeling, fatigue, etc). Pernicious Anemia runs in my maternal family side. I understood I would have to take shots for life so I was surprised I was taken off the shots. Should I request my new PCP run an MMA test
Tracy says
Have you been tested for pernicious anemia? You should have been tested when you were diagnosed with a B12 deficiency, especially since it is known to run in your family. Get tested if you haven’t already.
Other reasons your B12 level has dropped includes gut parasites and SIBO (small intestinal bacterial overgrowth) which can rob your body of B12.
Dianna says
I went to the doctor complaining of dizziness, memory loss, stumbling, depression, numb feet and hands, and many of the other symptoms mentioned here. My B-12 was 115. I have been on B-12 shots for 4 months, every other week. I just had blood work again and it still only 249. She said that is very low considering I have been having shots for 4 months. She wants me to see a Gastroenterologist. What would case my levels to not increase. I could not tell a bit of difference from the shots. I feel exactly the same as when I started. I want to feel better. I have been like this for so long, I guess it just feels normal to me now. It is all I have known for so many years. Thank you for your input.
Lynn_M says
Dianna,
The B-12 shots you’re getting are probably cyanocobalamin. People with certain genetic polymorphisms lack the enzymes necessary to effectively convert cyanocobalamin to methylcobalamin, the active form of B12. You could look into getting injectable methylcobalamin from a compounded pharmacy, as one solution.
What I use is a methylcobalamin/adenosylcobalamin transdermal oil from b12oils.com. It’s a red oil that comes in a pre-dosed pump. I apply it on my skin at least once a day and rub it in until the red disappears – takes maybe 15 seconds. You could use daily or even more frequent applications of the b12oil while continuing your injections.
You need Vitamin B2 to metabolize Vitamin B12. You might check out whether you have any other nutrient deficiencies.
The serum B12 test is not very accurate. A MMA test (methylmalonic acid) would give you a truer picture of your B12 status.
Loretta M says
A couple years ago my doctor suspected mal-absorption issues, as my B12, Iron, and Vitamin D (possibly others, too) levels were all below HALF of the minimum recommended level. Colonoscopy revealed no evidence of Celiac Disease…my doctor didn’t pursue any other causes, and eventually I changed my doctor! However, I have heard him and other doctors say that a swollen tongue can be an indication of low Iron levels. If Iron, Ferratin, and B12 levels have not been tested, it’s a good place to start….also fairly easy to treat with prescriptions/injections.
LISA says
I HAVE BEEN TAKING B12 SHOTS FOR 5 MONTHS. I TOOK 1 ONCE A WEEK FOR 3 WEEKS THEN ONCE A MONTH. I FELT A LITTLE BETTER AFTER TAKING THE SHOT THEN I WOULD GO BACK TO FEELING TIRED, NO ENERGY, ECT. MY DR RAISED THE DOSAGE TO BI-WEEKLY AND THAT WASA COUPLE MONTHS AGO. I STILL FEEL THE SAME WAY. WHEN MY DR’S OFFICE CALLED TO TELL ME MY B12 WAS LOW AND THAT I HAD TO TAKE INJECTIONS PROBABLY FOR THE REST OF MY LIFE, SHE NEVER TOLD ME WHAT MY LEVELS WERE OR WHAT CAUSED IT. WHY DO I STILL FEEL THIS WAY???
AnnF says
Hi Lisa,
I have a few thoughts for you:
a) 5 months isn’t that long. It has taken me over 3 years of taking the sublinguals, and I still feel tired, but I do feel better. Many of my symptoms, like foot pain, got better right away, so if you have symptoms besides fatigue that don’t seem to be getting better, I would discuss other diseases — diseases which might have developed because of low B12 — with your doctor. Lupus is the first one that comes to mind.
b) Take other vitamins — B complex, D3, Folic Acid, Iron, Zinc, C, and Probiotic.
c) Go to a pulmonologist and have yourself checked for asthma. It kind of snuck up on me, but my first visit cleaned out my lungs so well, I had tremendous energy, and didn’t even need my 1x glasses to read! It only lasted for about 2 days, but it was great.
d) Have your liver checked out. If there is something wrong, there are a lot of things they can do. The latest news is even if your liver is really bad, you can heal it by drinking 4-5 cups of black coffee a day.
e) See about weekly B12 shots.
It’s good that you have a B12 proactive physician, so I would discuss all my symptoms, even the smallest weird thing you notice lately, with him, and see if he has any ideas. Good luck!
Yash says
Hi, mostly Vitamin B12 & D3 have similar symptoms except those related to neurological (and some which I may not know). I would suggest please check your Vitamin D3 levels and if found deficient or even insufficient get those shots too. Hope to hear to recovering soon.
Cheers
Yash
Colleen says
What many people don’t know is that you can have a high level of B12 but it’s not reaching the cells. My serum level of B12 is 1500 (I have taken methy B12 shots for years) but in spite of supplementation of it and folate, my homocysteine level was still high. My doctor ran a micronutrient test that showed in spite of all those shots, I’m deficient in B12 in the cells. I have a c677 methylation defect. So don’t assume your serum levels are accurate.
Ally says
Collen- were you able to fix this? If so, I’m curious as to how. I’m starting b12 and methylfolate soon myself.
Candace says
I had the same experience- I have very high b12 serum level when blood tested, but neurological b12 defiency symptoms and a nutrient test showed the defiency. I’m homozygous for c677t. I’ve been supplementing with a methyl compound and I’m still deficient according to that nutrient test and symptoms are bad as ever. Has anyone else in this situation found a solution? I’ve been on b12 shots in the past but maybe not enough or consistently enough.
Jon says
So you never explained what b12 is? Is it a vitamin or a bacteria? I also could not find any links to studies!! You are not a MD or even a doctor so you can’t advise people without providing evidence to the studies you reference? This is dangerous information Chris and you are misleading the public. I feel sorry for people that take your paleo advice, A diet never proven to be healthy or primal for that matter and in fact the studies show the opposite. Seriously I feel sorry for you that you make money while claiming to help people improve their health. You need to provide peer reviewed studies or it’s just an opinion from a guy who created a website.
Catherine Wessling says
Jon, there are multiple studies linked throughout this article – see the blue links. Chris also has a free eBook with references throughout on B12: http://my.chriskresser.com/ebook/b12-deficiency/
Rachel says
C’mon Jon just eat a hamburger maybe you be so cranky.
wy~ says
Jon – with all due respect – you need to wake up and smell the carbohydrates. This unsubstantiated ‘Paleo diet’ as you refer to it at heart is simply eating real food. Not food from boxes and plastic wrappers. I do not eat Paleo style – I eat about 100% meat. Now there is something to get worked up about.
Chris says
Not sure if this helps or if anyone is interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption). Apparently it came out a month or two ago. Has anyone heard of it or tried it??
Tracy says
Yes, I’ve heard of Eligen but none of my doctors have. I would love to know whether it will work for those of us with pernicious anemia, who cannot absorb B12 from food. It would be great to just take a pill every day.
My guess is that it will be heavily marketed to users of PPIs and H2 blockers. Those drugs decrease stomach acid, and low/no stomach interferes with absorption of B12 from food, eventually leading to a B12 deficiency. This could be a way around that problem since many don’t know the danger of long term use of those drugs.
It may also be prescribed to those who have gastric surgery.
whitleigh says
I am finally feeling well again. But a year and a half ago I was extremely B12 deficient. No energy, couldn’t see or walk straight. My Dr’s couldn’t help etc.. Anyways, after carving pumpkins before Halloween, roasting the seeds and eating a lot of them one night. I passed a long tapeworm! (I know, it was aweful) it’s embarrassing too, but after that, I started getting b12 shots and am better now! Noone would have known it was a tapeworm if I hadn’t eaten those pumpkin seeds!
Just don’t rely on dr’s. Luckily I found out the cause randomly. But they would not have found that out. One Dr. tried putting me on anti depressants b/c I was so tired.
Jane says
I began using an organic vegan based B12 spray after I had an oral surgery that left my lip and chin numb for weeks after surgery was done. I developed severe recurrent yeast infections. I realized that this was in part due to the antibiotics which were given to me after surgery. BUT as Chris Kresser states if the only true form of B12 comes from animals and the vegan version of B12 spray uses Brewers yeast (saccharomyces cerevisiae) to derive B12 then does that mean it’s pointless to be taking vegan B12 supplements? This seems to be the appropriate conclusion. So my question is: how do B12 injections differ from vegan sources of methocobalymin? Is it safe to inject B12 if the vegan methocobalymin (derived using Brewers yeast) may have been the culprit in my yeast infection? How are the shots different?
framistat says
Candida albicans is the yeast that causes yeast infections. You can combat it with Primal Defense ULTRA (contains Saccharomyces boulardii, very beneficial), caprylic acid, gymnema sylvestre, etc.
Before abandoning the spray, have your B12 levels tested. Sublingual B12 can be comparable to shots and much less expensive. Best of luck.
Ian says
Can anyone chime in on this process to make homemade B12 mineral brews. You ferment a mineral solution which contains trace amounts of cobalt. The idea being the bacteria can produce b12. Here is the process…
“What I have been doing is to buy a very high quality probiotic with more than twelve strains (I would like to synthesize one myself from a pristine organic source when I learn the process). I then add this probiotic to water or coconut water in a good sized mason jar or a fresh local organic fruit juice you may have ripe in your area… then I add some ionic minerals and I fill up the jar with liquid and place a loose cap on it and let it brew for one to three days in a warm and dark place- if you have water kefir grains this is better to add to as well- if you are using only water and no juice then it is important to add about one to two ounces of sugar to a quarter to half gallon of water this way the bacteria can “wake up” and start metabolism and proliferation using the sugar as a fuel source. After one to three days the brew will not have sugar and it will have bubbles because of bacteria releasing Carbon Dioxide. The Key is to give the bacteria enough minerals to convert into usable forms for the body for example high quality Ionic Minerals Eco Organics Augustus Dunning in Texas is well made and he can give you an idea how this process works by the analogy of making compost tea. In essence instead of making compost tea for your garden you are making a highly utilizable mineral brew for your body, these bacteria will become house cleaners in the body. One the brew is done you can drink half of it in a day, at the end of the day refill with water and add sugar- or add fresh juice or coconut water and let brew again, because of the activity being present in the brew it will be ready in around twelve hours at around 75 degrees F. So this may well be a source of B twelve if cobalt is present in the trace minerals you feed the brew”
kristy says
I feel so frustrated. My results came back as 142 p/mol and my doctors response was that i need to ‘stop reading up on B12 deficiency on the internet’ as my level is ‘normal’. I would like to start trying for a baby and would like my levels to be a lot higher. My GP told me that my B12 levels are of no concern. I could accept this if it were easy to simply get a second opinion however I live in a remote community and there is no other doctor. She honestly made me feel like I was a moron for requesting a B12 shot with my current levels. Crap Doctor award goes to her.
Samantha says
My B12 level was 232 pg/mL and my doctor had me come in everyday one week and get a shot, next week twice and I did twice a week for a month, then once a week for a month, then the following month bi-weekly, and then finally once a month. My symptoms were fatigue, tired all the time, depression, memory loss, body aches, and dizziness. But also my vitamin D level was horribly off along with the B12. If I were you I would get a second opinion. My level was 232 pg/mL but my physician said that was extremely too low. Good luck!!
Annalise says
Time for a new doctor!
Matibob says
New doctor….my thoughts exactly!
Marj says
I never had my B12 checked prior to becoming pregnant.
AnnF says
Hi Kristy,
Unfortunately, a lot of doctors are ignorant about B12. They feel it is homeopathic nonsense. I had CLASSIC B12 symptoms, right down to the red sore tongue, but my doctor didn’t diagnose me. She was only worried about my blood pressure.
If I were you, I would definitly start taking at least 5000mcg a day of B12. I take Natural Factors that I get through Drugstore.com. You should also take Folic Acid. Some B-complex pills have it, and some don’t (you should take a B-complex, but ignore their B12). Check out different OTC pre-natal vitamins for the rest of your vitamins. See if your doctor will test you, and give you the right info for D. She might, they are all into D now. I don’t know what the right number is, but if it is low, make sure you spend 15 minutes in the sun every day without sun block — that includes face cream with sun block. If you have to take a supplement, I take VitaFusion D3.
Good Luck!
Ally says
Many people cannot utilize folic acid, especially if they have the mthfr gene mutation. A prenatal with folate or methylfolate is much better than folic acid.
Greg says
Ally, that is not really true. For a start folate is the ionized form of folic acid. It is used as the back-bone for many derivatives of folate. All people, regardless of their MTHFR status can use folate for their folate cycle, as it does not involved MTHFR. In contrast, you cannot use methyl-folate in the folate cycle unless you first remove the methyl group to make tetrahydrofolate. For this you need the enzyme methionine synthase, BUT in order for that enzyme to work you need methyl B12 as a co-factor for methionine synthase. Thus you cannot use 5MTHF if you are severely B12 deficient. This is regardless of your MTHFR status. MTHFR only becomes involved in this process in order to move folate out of the folate cycle so that you can use the resultant 5-MTHF as a methyl donor for the methylation cycle. So theoretically you can use either folic acid (folate) or 5MTHF for the folate cycle, but you can only use 5MTHF if you have sufficient B12 for methionine synthase to work.
Ally says
Yes, I absolutley agree that methylcobalamin is needed. It’s very important to have adequate levels of b12, specifically adequate intracellular levels, in order to utilize methylfolate and improve methylation. I disagree on two things, however. Folic acid is NOT the same as folate. Folic acid is synthetic, while folate is found in food. The terms cannot be used interchangeably. Those with the mthfr mutation, especially those who are homozygous, lack the ability to break down folic acid. If one is heterozygous, the ability is approximately 30% reduced. If homozygous, the ability can be dangerously low at around 20-30%. Depending on other factors, including lifestyle, nutrition, other snp’s, etc, folic acid can build up in the blood in those who aren’t methylation well and cause many problems. If a woman knows she has mthfr, she is much better off supplementing with a prenatal that contains methylfolate. Pregnancy is a time of high demand for folate, and if the mother or baby have mthfr, and are not receiving adequate amounts of folate or methylfolate needed for growth, repair, methylation, etc, problems can arise. Again, I defenitley agree other cofactors are needed, but as a dietitian and someone with mthfr, I whole heartedly disagree that folic acid is safe for those with mthfr, especially women of child bearing age.
Greg says
No Ally, you are not correct about folate. Folic acid, is the unionized form of the vitamin, the ionized salt form is folate, thus sodium folate, would be how you describe the sodium salt of folic acid. Thus if you take folic acid the carboxyl group is COOH, now if you then add sodium hydroxide to a solution of folic acid the change in pH will ionize the folic acid from COOH to COO-, The sodium ion (Na+) will then associate with the negative charge on the now ionized folic acid and form the complex sodium-folate Na+Folate-. This an incredibly basic bit of chemistry and I cannot understand why people don’t just check this. The same thing happens with most organic acid, such as acetic acid (R-COOH), when this is neutralized with sodium hydroxide, it becomes sodium acetate (Na+RCOO-), which you can purify as a salt. When you put folate into the stomach, the reduced pH in the stomach turns it into folic acid as the carboxyl group is now not ionized.
Once either folic acid (folate) or 5MTHF enter the folate cycle THEY ARE IDENTICAL no matter which form was administered.
Ally says
I think we’re going to have to agree to disagree on this. I understand what you’re saying, but that doesn’t change the fact that those with mthfr cannot break down and utilize folic acid. They lack the enzyme to do so. Folate contains some methylfolate, but not enough to support methylation. Thus, with low amounts of the usable form of methylfolate in food, and an inability to breakdown folic acid, supplementation with methylfolate is necessary for those with mthfr. Again, as someone who has been directly affected by this mutation and who works in the field of nutrition (and yes, I took a lot of chemistry), I stand by my original statement. I encourage you to read and learn about how the two are different and how those with the mutation are affected. Here’s an article from Chris kresser himself explaining it. http://chriskresser.com/folate-vs-folic-acid/ There are MANY others if you do a simple search. There are even some comments from those on this thread with mthfr who commented about the need for methylfolate and methylcobalamin. I’m not tring to argue. I’m merely passionate about this topic because of how poorly it began affecting my life after having a baby.
Greg says
Hi Ally, You seem to be mixing up two cycles, the folate cycle and the methylation cycle. In the folate cycle, the backbone molecule folic acid(folate) is modified to form different analogues/derivatives of folate. If you start with folate, you then make dihydro-folate, tetrahydro-folate, 5,10-methyelene-tetrahydro-folate and N10-formyltetrahydro-folate. Now these are all analogues/derivatives of folic acid, but in the pH of the body they would be derivatives of folate. They are NOT folate, they are folate analogues or derivatives. Nor are any of them involved in methylation directly. You can make all of these derivatives of folic acid by consuming folic acid as a supplement. So folic acid as a supplement will make all of the folate cycle analogues. For the folate cycle you do not even need MTHFR, as in the presence of enough SAH it is turned off.
Now the methylation cycle is very different. Here, technically you don’t need folate analogues at all. If you eat enough methionine you can get your methylation from methionine and thereby make SAM. Now you would have to eat a lot of methionine though. Similarly, if you provided enough methyl B12, you still wouldn’t need 5MTHF, you only need 5MTHF to regenerate methyl B12, once it has donated its methyl group to homocysteine to make methionine. Technically, if you provided enough folic acid, you technically don’t need to provide 5MTHF at all, as you borrow it from the folate cycle, strip it of its methyl group and RETURN it to the folate cycle. Being a cycle the folate backbone goes round and round being modified and forming the various folate analogues.
So the problem happens when you want to move the folate analogue out of the folate cycle so that the methyl group that was put onto THF by SHMT can be used to regenerate demethylated methyl B12. This is when you use MTHFR. It has nothing to do with dietary folic acid, 5MTHF or folinic acid, it has to do with modifying 5,10-MTHF and reducing it to 5MTHF. Thus, regardless of the source of the folate backbone, be it folic acid, folinic acid, THF, 5MTHF, it is the 5,10-MTHF that is modified to form 5MTHF. What appears to have happened in the “Great Folate Debate”” is that somewhere along the debate someone has shortened the common “folate analogues” description of all of the folate derivatives in the folate and methylation cycles and changed the terminology to “folates”. One would normally only do this in a paper, or similar publication where you would tell the reader that you were going to group all of these analogues under the terminology “Folate” with the added “analogues” being then understood. FYI despite the claim that folic acid did not exist before supplementation, this is incredibly unlikely as you have the enzyme dihydrofolate synthase. From an evolutionary point of view one would not bother making an enzyme for which their never had been a use, and then maintaining it in the population. Similarly it was the addition of folic acid to food that reduced the incidence of spina bifida, not 5MTHF.
Greg says
Ally, you are also wrong about MTHFR. MTHFR has nothing to do with the initial processing of dietary 5MTHF. This B2/B3 dependent enzyme is responsible for reducing 5,10-methylene-THF (hence the name reductase) to form 5-MTHF. So the enzyme moves and converts folate out of the folate cycle and makes it available to donate the methyl to regenerate Met from homocysteine. Thus, MTHFR has no idea where the 5,10-methylene THF originated from, either as folate or as 5MTHF. Thus MTHFR mutations have no variable influence on the processing of either type of folate analogue. In fact in the absence of B12, only 5,10-methyleneTHF, which has originated from folic acid (folate) will be processed by MTHFR. The good news is though that most people have at least a very small amount of B12 (they would be dead otherwise).
Ally says
I’m not wrong, but maybe you’re misunderstanding what I’m saying. Yes, that’s what mthfr does, but those with the mutation, esp those who are homozygous, have a greatly reduced ability to convert 5,10-methylene-THF to 5-MTHF. 5-mthf is what the body needs and uses to function. Folate from food is a better option for those w the mutation because it already contains some methylfolate. With a 70-80% reduced capacity to metabolize folic acid, it starts to build up in the blood and cause many problems (high homocysteine, birth defects, etc), esp for those who are homozygous, meaning both copies are defected and do not function properly. Low b12 only adds to the issues. Most people with mthfr have problems utilizing b vitamins as well. Generally speaking, supplementing w methylfolate and other b vitamins, bypasses the ineffectiveness of the defected genes, and provides the body with the necessary amount needed for methylation.
Greg says
Ah, Ally, we have a saying, “convince a person against their will….”. We have studied the incidence of over 165 SNPs in many people with CFS and in the children and mothers of children with ASD. There is no difference in the incidence of MTHFR alleles than in the general population. I even have people who are “-” for all of the common alleles in MTHFR and yet they have CFS. IT IS NOT THE REASON THAT THEY HAVE CFS. What is more they were perfectly fine with their genetics for all their life until they got sick. What is more we have been able to basically cure the CFS without using 5MTHF at all, so once again IT IS NOT THE SOLUTION. It is your nutrition, not your genetics that is the problem.
Molly Malone says
http://www.seekinghealth.com/media/MTHFR-Introduction-Basic.pdf
1. Folate is vitamin B9
2. Critical regulator of methylation
3. Essential for DNA synthesis and repair
4. Essential for neurotransmitter production
5. Essential for WBC, RBC and platelet formation and maturation
6. Essential for detoxification of homocysteine
7. Folic acid is unnatural to the human body
8. There are over 150 forms of folate in food
9. Use the appropriate term – don’t just say ‘ folate ’ – be specific
10. Folic acid must undergo numerous steps in order for humans to utilize it
11. Various nutrients and enzymes are needed to convert folic acid into methylfolate
12. MTHFR is the last and final step from the conversion of folic acid into methylfolate
http://seekinghealth.org/gift/folatevideo/
ally says
Thank you Molly Malone!
Greg says
Thank you Molley for those functional aspects of the “folate derivatives. Technically you only need to convert folic acid to DHF, which can be used for regeneration of BH2, so it doesn’t need a lot of steps to contribute. Most of the functions come from the folate cycle. In addition, I would regard 5MTHF as being more a regenerative molecule to make methyl B12. It is methyl B12 in combination with methionine synthase that reacts with homocysteine, but it is also betaine. Further, homocysteine should not build up in the cell if CBS is working properly. Evidence now suggests that it is lack of function of CBS that leads to Hcy accumulation. MeCbl is probably really only used when dietary methionine is low and you need to recycle the Hcy, though to Met, then make SAM.
As for the 150 different “analogues of folate” most of these would be accounted for by polyglutamate modfication of the various analogues, thus having 1,2,3, 4 or 5 glutamates would increase the number of analogues,. I am sure that you realize that this is required to keep the analogues in the cell. 5MTHF from diet is not polyglutaminated but (like folic acid) must enter the folate cycle for this to occur. In contrast to folic acid though, in the absence of MeB12 this won’t happen with 5MTHF and leads to elevated serum folate, confusing the picture for the diagnostician, particularly when B12 levels are low.
Leslie says
Kristy–If you have the insurance or simply can afford the b 12 shot–Demand It. I live with a b 12 deficiency. I get a shot every 2 weeks and I’m not even 40. It has taken a permanent disabling toll on my body–overlooked for so long. Lord knows–those babies will suck the life out of you! Babies get ‘fed’ first, right? Don’t be afraid to tell your doctor–“It’s my body–Give me the shot.” Then-do your research. Sometimes we just can’t trust the doc to take care of us. Try to find your underlying cause and start there. Best of luck. Get em.
Learner says
Kristy,
Dug up that Japanese study and take it to your doctor, along with info from the CDC that says under 200 is low.
There are also some writeups by doctors for doctors online. Print and take to the doctor as well.
Good luck!
AnnF says
Learner,
That was very nice of you but I am willing to bet that Kristy’s doctor will not read anything, make a face, and say something nasty.
Tracy says
Kristy,
At 142 your B12 is low. The gray area where neurological damage can occur is 200-450 pg/mL which corresponds to 148 – 332 pmol/L. I sincerely hope you have gotten treatment by now as you are definitely deficient.
To convert pg/mL to pmol/L, multiply by 0.738. In the US, we typically use pg/mL. For the lower level of 200 pg/mL, 200 * 0.738 = 148 pmol/L.
Or to convert your 142 pmol/L to pg/mL, divide it by 0.738. So in more familiar units to those of us in the US, your B12 was 192 pg/mL. Low!
Judy says
Kristy,
10 yrs. ago I was having numbness and tingling in my feet.
Went to numerous doctors who couldn’t find out what was causing it. Two years later a doctor did bloodwork on me and found out I had a severe B12 deficiency. By then nerve damage and muscle weakness had already set in. The doctor had me get a B12 injection every day for a month and then broke it down to where I hasd to get a shot once a month.At the time when my deficiency was found my level was an extremely low 41.
Don’t let this happen to you. Start to get injections or some sort of absorbable way.Good luck.
Judy says
Is there anyone that has severe spacticty from a B12 deficiency in their legs? And if so, is there anything to help it. My legs get so very stiff cuz of neuropathy.
Carolyn says
According to my drs, that is a low level. Years ago, mine hit 102. I now have nerve damage, irreversible and progressing. Don’t waste time, you nerd to be treated. I was started on b12 shots, 2 per week first month, then 1 a week for a month and then one per month since. Until recently my level has stayed between 500-700.
wendy says
Hi, I’d like to suggest you add symptoms of allergy to your list of things b12 def mimics. At age 21, I was diagnosed with b12 deficiency, at the same time I had random strange allergic episodes of facial swelling/itch etc. The b12 deficiency was put down to vegetarian diet. The facial oedema just stopped happening (I think now because my B12 defiency was treated). Ten years later I was b12 deficient again, and again was having random allergic reactions that included severe facial swelling (I did not connect the 2 things back then). Allergists were never able to come up with an answer other than to take antihistamines. At the same time but unconnected, my b12 defiency was treated and the swelling episodes went away. Fast forward another 15 years and I am plagued by urticaria, again an allergist can’t explain adequately why this has come on but recommends daily antihistamines. I continue on these for a few years – then I am diagnosed with b12 defiency again (and finally confirmed as pernicious anaemia). And again, treatment of the b12 deficiency leads to complete resolution of my allergic symptoms. Can’t be coincidence?
Elizabeth says
Just asked my primary care doctor to test me for PA. B12 was 214 and intrinsic factor antibody test was 1. Both were stated to be normal on the report but since they were both borderline, I was told to follow up with a GI. I have numbness/tingling in hands and feet, severe fatigue, anxiety, cold intolerance and eye twitches. My mother had PA otherwise I would never have thought to get checked. I want to be sure I am prepared with the right questions for my appointment. Any advice? I am also hypothyroid. I am quite disappointed that since the two conditions are often seen together I was tested for RA, Lupus, Celiac and kidney issues but never PA until my request. How can I trust the next doctor and yet I am unsure of what might be involved to ask the right questions. Appointment is five days away and everyday it seems symptoms are a little worse. So hard to be patient while feeling so unwell. Nothing I can do but wait.
AnnF says
I guess you are waiting to see if you can get the shots. I think you should accentuate your B12 symptoms — though I had CLASSIC symptoms right down to the red painful tongue, and nobody thought I was deficient.
Anyway, if the next doctor doesn’t give you the injections, don’t wait, start taking the sublinguals or start using the oils.
For hypothyroid, make sure you eat foods with high iodine, and use iodized salt.
For the eye twitch, take Magnesium. A word of warning, though, if you get the poops often from the lack of B12, magnesium might worsen that.
See if you are D deficient, that’s any easy one to diagnose.
Be careful on the dosage of the other vitamins and minerals, they are not as safe as B12, but you don’t have to worry too much if they are, I’d say, as a rule of thumb, up to 200% the daily recommended allowance.
There was a study recently that Vitamin E intake might seem like it is adequate, but it can attach itself to certain fat molecules ( I don’t think they were specific about which ones) in the bloodstream, and never make it into the cells at all. Well B12 is the same way, only more things can keep it from doing its job. Then “they” say that taking vitamins does nothing. How they quantify this, I don’t know. The medical community really needs to wake up and learn how bodies really work rather than how they theoretically work.
Kerin T says
You sound like my clone. I just had a doctor’s appointment today and found out I have this problem. The thing that gets me is I’ve had every symptom almost over a 10 year period. A fluke thing had me at this gastrologist who thank God knew what was going on! I’ve had so many tests over the years and never once was tested for this.
Sara says
Who is your doctor. I need help to get to someone who knows what they are doing!
Sara
Dawn says
Over the last 3 months, I have started to suffered from what seems like musclular pains, started, in my shoulder and moved around to my knee, foot arm and hands causing a lot of swelling, and stiffness. I have now had 2 blood tests that have ruled out iron and B12. Also, I tend to start having a period 1st one after 19 days lasting 10 days 2nd after 17 days lasting 7 days,started to feel numbness and swelling to the hands and shoulder, and started to bleed after only 6 days, doctor has suggested more bloods to be done in a month I am so tried – think I should go and get bloods tested earlier, any advice.
AnnF says
Hi Dawn,
First, the muscle pain could simply be caused by your pillow. Every time my arm goes numb and my hip and knee hurt, I know it’s time for a new pillow — use a higher, firmer one rather than two.
With regards to your period woes, you didn’t say how old you were, but I am in my early 50’s, and starting to go through menopause. I was originally getting my period every 31 days exactly. Then last yearish, I started getting it every 3 weeks, then 33 days, then 3 weeks. Now twice (I am on the second time) I haven’t gotten one for about three months. In between I had 3 in 1 month. The first day of the 3rd one, I had to call my husband at work to ask him to buy me iron on his way home. I definitely think you should be taking iron and zinc to help absorption. I use Feosol (Bifera, the purple one that doesn’t stop up your colon). I have used the regular Feosol in the red, every once in a while I couldn’t go, and it turns my stool the same color as the pill, but it works well and is a lot cheaper.
Problems with periods can also be caused by cysts/fibroids. I’m not sure, but I think your OB/GYN can use an ultrasound to detect them. You should ask.
Defintely try B12 5,000mcg, it couldn’t hurt, and it might help. Try it before they diagnose you with Lupus or some other thing when all you might need is B12.
I did have joint pain and problems with my period for about six months before I started taking B12, so you might have luck with it as well. Good Luck.
mj says
How long after start b12 5000 mcg did you start feeling better?
AnnF says
Hi MJ,
I had such pains in my legs and feet that I could barely walk. I started by trying cyanocobalamin, and 2 weeks after I started, I realized that I didn’t have as much pain, and within a month, I could walk up and down stairs with no problem at all.
The feeling that everything was just too overwhelming took about 2 months to START going away.
I actually started by taking FOUR 5,000mcg pills a day for, I think, about a year. I eventually lowered the dose to ONE 5,000mcg a day, but my symptoms, especially the foot pain came back after about one month, so now I take 2 about every other day, and that seems to work out well for me.
I also take TWO Phillips Magnesium pills a day
TWO VitaFusion Platinum gummies a day
FOUR VitaFusion D3 a day (I was practically negative)
ONE Nature Made Super B-Complex every so often. I should take it more often, but it makes me so instantly hungry that I feel extremely nauseous. Vitamins can do that.
ONE Feosol Bifera a week. ONE a day if I get my period.
ONE Zinc when I take my iron, but I should probably take one a day, or every other day.
TWO Sundown Prebiotic every day(ish).
TWO Sundown Probiotic every day(ish).
ONE Cod Liver Oil pill or 1 TEASPOON Cod Liver Oil in the bottle a day.
ONE pill Jet Alert when I need energy — sometimes none, sometimes 4x a day.
It’s 4 1/2 years since I first started taking B12, and about 3 years since I started the other supplements, and I noticed a few weeks ago that I am starting to feel like my old self again! I still get super tired super fast, and I do still have a real problem with mucus, but I feel pretty good! I don’t feel overwhelmed by the smallest thing, I feel a lot more lighthearted again, and I have my balance back — another symptom was that I kept walking into walls.
Hope this helps.
Leslie says
MJ-
I get b 12 injections every 2 weeks. You can tell when I need them–I get, let’s say-cranky. I can’t find my words, constant headache, unsteady, nauseous, over-tired etc. If I go too long I start to get the numb tingling in my face and limbs. To answer your question–I feel better immediately after my shot. Makes my jaw drop. My Father-in-law was the same way. I don’t know how you go from one extreme to the other- but I tried the supplement pills and the sub-lingual liquid…nothing works like the shots. My underlying cause is pernicious anemia if that applies to you.
AnnF says
Dawn,
I just saw on Doctor Oz PCOS — poly cystic ovarian syndrome (I think syndrome).
So, take B12, but it’s one more thing to check out.
Lisa says
I have recently been diagnosed with ME/CFS. My b12 level is 268 which is in normal range, however I believe if I was given b12 injections my symptoms would improve. But I am having trouble getting the doctor to listen to me. I am thinking of getting a second opinion and getting further tests done. Listening and reading other peoples stories b12 does seem to be a miracle in helping people rid or easing the symptoms
Tracy says
Go get a second opinion. You may want to try a naturopathic doctor, they seem to be much more aware of B12 and gluten issues.
You can always supplement B12 yourself. Amazon has sublinguals and mouth spray. Cyanocobalamin, the form most US doctors usually administer, is the worst option as the body has to convert it to a usable form and rid itself of the cyanide. Hydroxocobalamin (used in the UK) or methylcobalamin are much better. You can find injectable methylcobalamin over the internet, I did and from a YouTube video learned how to inject myself subcutaneously. I have pernicious anemia so sublingual B12 doesn’t work very well.
JILL LOCK says
I have just been told mine is 218 and a friend told me her naturopath said it shouldn’t be below 500
Jen Garrett says
Thank you so much for this forum! In the last two years, I have experienced worsening tingling in my legs, arms, and just recently around my lips. I had blood work done and my b12 is low, but still in the range. I’m a vegetarian of 5 years, but I still eat cheese on a daily basis. I thought that would provide the b12 I needed. When I became a vegetarian, the books advised b12 supplements but I had no idea that a deficiency could have such lasting effects. What’s the best way to reverse all this? I’m really concerned now about lasting nerve damage. What’s the best route – is a supplement sufficient or should I ask my doctor for shots? She didn’t suggest anything because my levels were still in the acceptable range. Thank you!
karen biers says
My B12 is under 100. Four months ago I was getting shots and it was at 1500. Four months later its under 100 and Im so weak, dizzy, muscle pains, cant think, overly moody when Im not a moody person. All I want to do is cry because NO one will help me. What do I do next? Please I beg for help
Someone who knows says
Hi, Karen,
I used to have many of the symptoms you describe too, before I took charge of my health and started taking B12 supplement daily. I feel MILES better now that I’ve been taking it daily for some time.
You can buy it on Amazon.com:
http://www.amazon.com/Jarrow-Formulas-Methylcobalamin-5000mcg-Lozenges/dp/B0013OQGO6
This is the brand I use and it works great, though I’m sure any brand offering the same ingredients would work equally well.
Tracy says
Karen, have you been tested for pernicious anemia?
If you have PA then oral supplements won’t work very well as you have antibodies to intrinsic factor in your gut which is what absorbs the B12 from your food and transports it to where it is needed in your GI system.
With PA you will need B12 supplemented for life (usually by injection but there is a nasal spray available). Pay attention to the kind of B12, cyanocobalamin is readily available in the US but considered inferior as the body needs to convert it to a usable form and flush out the cyanide.
With your B12 so low, you can get serious neurological damage. My B12 was 196 and even at that level I could hardly walk. I had terrible sciatic pain and pain in my feet for months before finally diagnosed with a B12 deficiency. Then I tested positive for PA.
Pam says
I am have been veggie for years and always had normal Blood results, until recently, my latest tests show B12 deficiency. Nothing changed in my diet, i guess I just finally depleted my reserves.
sacha porter says
can b12 defficiency cause alot of weight loss??
AnnF says
Hi Sacha,
I have never heard of a B12 deficiency causing weight loss, only the opposite. Though it’s possible I suppose.
One friend of mine started losing weight rapidly, and it turned out she had diabetes. Another friend of mine had an overactive thyroid that caused her weight loss. I would see my doctor and ask about those two as well as any other thing he could think of that would cause unexplained weight loss. However, it also wouldn’t hurt any if you took B12.
Tracy says
Yes I think for some B12D can cause weight loss. You may not have sufficient stomach acid, which aids in digestion. Then you could have malabsorption of nutrients from your food.
I lost 15 lbs. over several months and I was quite thin to start with (my BMI is currently 19, low for a woman). Not sure whether it was my Paleo diet which is pretty lean in starches, or my deficiency (I have pernicious anemia), or both. Still struggling to gain some of it back. I don’t tolerate fat well, a higher fat diet makes me feel horrible.
Roy says
Hi Tracy,
Do you know if you have hypothyroidism as well as the PA, or have you not been checked?. There is quite a bit of evidence to suggest that hypoT may precede PA in some cases.
Tracy says
Hi Roy,
I certainly had hypothyroid symptoms (severe insomnia, night sweats, weight loss) but my lab tests never showed TSH to be out of normal range. My endocrinologist did not run any other thyroid tests (T3, etc.). When I was so very ill it felt like my thyroid was fluctuating between hypoT and hyperT but never could catch it in the labs. And docs in the US won’t treat thyroid based on symptoms alone. Part of my treatment has been acupuncture, the actupuncturist said those symptoms were classic PA where red blood cells becoming enlarged (mine are currently at the top of the normal range in size).
I recently learned I also have erythromelalgia (feet turn red at night, are very hypersensitive) and hypohidrosis (I don’t sweat much, real danger of heat exhaustion). So maybe some of my symptoms were related to that.
Roy says
That would seem to be a problem. There are many steps between the secretion of thyroid hormone and making active B2 as FAD/FMN, one of which of course is the iodination to make T3/T4, which requires dietary iodine (hard to get naturally without seafood), selenium (which is low in many areas), then of course there is dietary B2, which is hard to get enough of if you don’t eat dairy. You would be surprised at how many “euthyroid” people come up as functionally B2 deficient.
divya says
Hi tracy
My problem is also similar to yours. When i had b12 deficiency last year i had unexplained weight loss. This time also from the past 2 months my weight is decreasing along with some other symptoms. Did you get any solution now?
Bobbie Anderson says
Hi, I had the MTHFR test done and i am not sure what i need to be taking. I have two mutations. C677t and A1298c. My doctor have me a cream but i dont think it is working too well. What other things could i try. Thanks!!
JJohn says
I had to ask my primary care to include testing for homocysteine in the course of a routine exam and blood workup (age 64) and he wanted to know why I wanted it. It turned out my homoscysteine level was 20 (which I think is dangerously high) and I immediately switched some of the B12 folic acid supplement to a folate 5- methyltetrahydrofolic acid alternative. When I had first started taking B12 years ago my urine turned quite pungent and strong. I didn’t notice over the years that to have changed. As soon as I started the folate, the strong pungent urine returned…… which I take to be an indication that the folate is doing its job. I have a retest coming up and will be waiting to see that verified.
Tamara Harrison says
Hi Everyone, I had gastric bypass Oct 2014 after surgery I started getting weekly B12 injections and soon as I get the injection I start to feel like in having a allergic reaction to it. I loose my voice, my throat gets tight and I loose my train of thought. I’ve had food allergies my whole life this is the same type of symptoms I get when I have a allergie to food. Has anyone ever heard of someone being allergic to a b12 shot? Oh and I receive mine from a natural path and I use a vitamin B 12 with methyl.
Tanya says
I got the shots at first when my B-12 was low. Yes, I also had some kind of allergic reaction after my 3rd shot. My chest and neck got a large red rash all over my skin. Looked like I had been in the sun way to long. Told my Endo and he stopped the shots and put me on B-12 1000 mcg sublingual. I’ve been on this for almost two years now. Just had my B-12 checked and it was high so they are having me to take 1 every other day or 500 mcg daily. I’m also taking D3-5000 IU daily. Doc will see me again in June.
bukhtiar says
I am male 37 year old
I am use cholesterol medicine.
Imy vitamin d level 28.
b 12 level 128.
use injection last 2 week.
I a have pain chest tightness every time.
heart palpation.
any experience pls share
regards
Bukky
Stella says
Bukky – you need to take a potassium supplement until your body has built up its B12 reserves. Correcting B12 anemia temporarily drains your own potassium reserves.
Same thing happened to me, palpitations and chest pain. Once I started taking potassium the pains went, and I was able to stop taking it once the B12 levels had got up to normal. I used a soluble potassium “Sando-K”
Your doctor should know about this.
Hope this helps.
Amy B says
Start taking Vitamin C (Food Based like Rose Hip or Camu powder or the one by MegaFood) to help the absorption and to increase levels of B12. Usually Vitamin C deficiency is the cause of low B12.
Diana says
I’m wondering that since Chris says there are no vegetarian forms of B12, why do some methylcobalamin supplements say “suitable for vegans”. I’ve tried unsuccessfully to find out how B12 supplements are made. Someone online mentions that they are made from bacteria, and that the only reason animals have this in their gut is because they eat the plants that have the bacteria on them. Ultimately I need a methylcobalamin supplement, but want to make sure I’m taking one derived from the right source?
Laurie Getchell says
I have been vegan for over 4 years and vegetarian for over 10 years and I am not deficient in b12. i am also currently pregnant, so my b12 needs are higher. I take a vegan methylcobalamin spray once a day and my most recent blood test showed my b12 to be in perfect range. The methylcobalamin spray I take is from Garden Of Life, Kind Organics (certified vegan) and is produced from Saccharomyces cerevisiae ( a food yeast grown on molasses solution). I am living proof that Vegan b12 exists and this article is BS, meat eating propoganda. We have 0 nutritional requirements for animal flesh or their secretions. period.
David I says
I believe that Chris was talking about FOOD sources of B12–and he is right.
I’m not sure exactly why you are taking such a nasty tone. I don’t consider this to be ‘meat-eating propaganda,’ I consider this to be factual. The supplement you are taking is industrially produced, and is not ‘food.’
Incidentally, I’ve been a vegetarian since 1969, so I’m not exactly a tool of the meat industry.
Roy says
I agree with David. I always find it curious that a supposedly “normal vegetarian or vegan” life-style is in fact one highly supplemented with B12. You may be surprised at what they feed the yeast or bacteria that they use to make the B12. Normally the amino acid supply comes from acid hydrolysed casein, which is obviously a milk product from cows, so it is hardly Vegan. I would also be very careful of assuming that your B12 levels are “normal”. What you are measuring in serum is what you put into serum, and in your case it was methyl B12. This does not necessarily correlate with what is in your cells, where you need both methyl and adenosyl form of B12.
Cathy says
OK David and Roy, please tell me then – why, after being vegan for 20 years do I have a normal B12 level along with a normal blood cell count and full blood work up?
I have been tested various times over the 20 years, and there is no variation from when I was a massive meat and dairy eater. Why? After seeing these kind of articles this shouldn’t be the case, but it is. I am wondering what the real cause of B12 deficiency is, and whether it actually has anything to do with being vegan or not.
I heard that humans used to be able to produce B12 in their gut like other animals, but somehow lost the ability. Maybe that is not a universal truth. I’m not saying to ignore the issue. I think people need to pay more attention to their B12 levels. I’m just asking you to check your rhetoric and tell me why I don’t have a B12 deficiency.
Becky says
Cathy, I’m happy for you in that you are healthy and have good B12 levels, albeit having to supplement.
What I find frustrating is your apparent superiority because you don’t eat meat. This is a choice and as far as I am aware always is rather than your bodies intolerance. Unlike many including my daughter who has Fructose intolerance (the sugar in fruit and veg, also no gluten, wheat, or spices), without eating meat she would live on potatoes and rice and would probably not survive long (also has cfs due to above plus vitamin deficiency). It’s great that you’re healthy and able to make a lifestyle ‘choice’, but others aren’t so fortunate.
Gina Murphey says
Great response. I have in my life been all over the board. 16 years vegetarian many on and off years as vegan. I’m often anemic and b12 deficient. Started getting chronic uticarea( hives), but no one ever diagnosed it to be related to the b12. Currently I’m having like mental fog and constant headaches and haven’t been taking supplements for a long time. I’m only about 80% vegan if there is such a thing. Any recommendations on the right form of B 12 that I could get from Amazon that would help me right away? Thanks
Jo says
Laurie, a vitamin b12 deficiency is an insidious condition and you have stores of the vitamin in your liver, estimated to last 2-4 years so it will take several years to become deficient but it will happen, your body can not survive without b12, it’s vital, so please don’t believe that this article is BS, because it’s not. You are correct when you say that your unborn baby will be drawing on your nutrients and I am happy to read that you are supplementing. Please continue to do so and if you are intending on your child following a vegan diet then it is paramount that you supplement your child too because during their years of growth and brain development, vitamin b12 is essential. Trust me when I say that having irreversible neurological damage from an undiagnosed vitamin b12 deficiency, is the last thing that you would want.
Krista says
I have MTHFR polymorphism. I just found out that my B12 is very low. I know from reading Dr. Ben Lynch’s website that I need to be careful with methylfolate but does that include being careful with methyl B12? I need B12 injections and not sure whether to take the methyl B-12 my doc wants me to use (which has methylfolate included) or ask for hydroxocobalamin. I am already having severe neurological symptoms. Any ideas? Thanks.
Tanya says
Do you see a Endocrinologist? This type of doctor deals with these kind of chemical problems in the body. A Endocrinologist will test your B-12, folate, thyroid function, Vitamin D, with a few other test. My family doctor has never tested my B-12 or my vitamin d. I’ve had long term symptoms and was being treated but medication never helped. I had depression, crying spells, body aches/spasms, fatigue, mild seizures, memory loss. The family doctor stated he thought with all of these symptoms, i was bipolar. The word depression … So off i go to see a doctor for depression and this guy orders new lab work and he never checks my b-12 or my vitamin d level! I ended up in the ER after passing out in the shower. The ER tested me for B 12 deficiency and told me to get to an Endo first thing the next morning. I started out with B-12 injections for a few months to get my level back into a normal range. Then I changed over to 1000mg B12 sublingual once a day. Also, When your b-12 is low it effects your thyroid levels, they correlate together.
I know methylcobalamin treats the neurological symptoms and occurs naturally in the body. When you start the shots it can take a few months before you start feeling better. If you’re seeing an Endocrinologist he will know the best treatment for you based on your test results.
finndian says
I’ve been to many, many endocrinologists and not one did any type of nutritional testing. No, I find if you have B12 deficient tingling feet and go to the average endocrinologist you get put on Lyrica. Your endo is very unique. If the nutritional tests he gives you are serum testing instead of red blood cell tests I would find a more knowledgable alternative doctor.
California recently passed a bill making it mandatory that its medical schools require substantial nutritional training… first state in the union to require it. Right now future doctors have minimal training in nutrition and can opt out of it.
“On average, (medical) students received 23.9 contact hours of nutrition instruction during medical school”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430660/
Tanya says
A good Endocrinologist does more than just a CBC or give you a prescription telling you to try it and see if it helps your symptoms. They do Metabolic profile, Amino Acids, A1C, etc. These are the chemicals your body needs to sustain life. Tingling feet? I never had that with B-12 or vitamin D deficiency. I do know a few people that are diabetic and they complain of tingling feet. They’re also being treated with Lyrica.
I have been with the same endocrinologist for 22 years. You couldn’t pay me to see his assistants, much less a different endocrinologist. No matter what your medical situation maybe, he talks about weight and nutrition with all of his patients.
Mike says
I am a PA working for an Internal Medicine practice and I routinely check patients for their Vit B12, Vit D, etc. I must agree that during my schooling I received very little nutrition education. I have learned a lot from this and other sites.
Not all PAs are the same. You could always tell your physician what it is you like about him/her and why you don’t want to see their assistants. They may have one that has a similar thought process they would recommend to you should the physician not be available.
Tracy says
I had foot surgery late last summer for pain I’d had for well over a year, which was diagnosed as a neuroma (swollen nerve). A couple weeks post surgery, I started having major problems (horrible insomnia, surgery foot just didn’t feel right, felt depressed, had terrible pains in my legs and feet, heart palpitations, fatigue). My PCP referred me to an endocrinologist who had me get a whole battery of tests. But she NEVER ordered a B12 test (or vitamin D test for that matter). My cortisol was a little higher than normal, but that’s about all she found.
My PCP then decided I needed an antidepressant, Lexapro. That made me feel just awful and it was causing me vision problems, so I quit taking it after a week. Fast forward two months later, I was using a walker to get around and was seriously feeling like I wasn’t going live to see the New Year. No one at my HMO could figure out what was wrong with me, nor did they care. About every couple of weeks I would make an appointment to see my doctore and ask for yet another set of tests, hoping to figure out what was going on with me.
Finally in late Oct a doctor who was substituting for my regular physician for that day ordered a B12 test, which was found to be 196. My PCP said it was so close to the low cutoff of 200 that he didn’t think it was significant. Since by then it was the ONLY test that appeared abnormal, I did some internet research and learned my symptoms matched many of those for B12 deficiency. I then insisted he begin treating me for B12 deficiency. Another blood test later on determined I had pernicious anemia.
It’s now 5 months after I began treatment and am still recovering from neurological symptoms and may have permanent nerve damage to my feet. As yet I am unable to to work (I was an engineer and lost my job since I’ve been out since Aug) and have difficulty walking due to pain in my feet.
I am so angry with the medical system for 1) not catching this simple vitamin deficiency, 2) using a low cutoff of 200 which is WAY TOO LOW, and 3) doing a poor job of helping me manage my treatment (cyanocobalamin worked for me at the beginning but now makes me very sick for about a day after I get a shot and I have had to find alternatives on my own as the HMO formulary only has cyanocobalamin).
Lisa says
Tracy, I had the same thing happen. I would like to talk to you if you are still having symptoms. Thanks!
Tracy says
Lisa,
Yes I am still having symptoms and I would like to talk to you too. How do you suggest we connect? There isn’t a private message capability on this site. I am a member of the Pernicious Anemia facebook group so you could find me there.
Ghadir says
Hello!
I am experiencing symptoms that are exactly associated with B12 deficiency.
I have numbness in my legs and feet, twitching/spasms in muscles and a finger, memory loss, loss of concentration and hairloss. I do have a lot of dairy in my diet and i do eat red meat. Which doctor should i go to for these symptoms ?
jr says
i just was told by my ”stroke Dr.” that my b-12 and vitamin d is serverly low and i have to take injections .i had 2 strokes 2 yrsa ago and have had alot of mental and physical problems.but finally 2 months ago i can walk without a cane or worrying when i will tumble.i was early fifties when i had my stroke just lost alot weight the right way and walking 3 miles a day then it hit me .so i am concerned about the supplements because i take my blood thinners .i was also told i had corti basal degenration diease.the stroke damaged 2 parts of my brain memory short term the other i do not know.could being low in these vitamins cause the symtoms
Yvonne says
I am new to all this although I have suffered with constant pain for a lot of years now And I think now that I have been mis diagnosed I have ostio arthritis in a lot of my joints I have had both hips and one of my shoulders replaced also my knees are bad and now my feet more left than right has started with very serious pain my hands are now very swollen and my fingers are quite bent now so sore some days it’s just like toothache the swelling is round all my knuckles as well .I also have depression which seems to never go away I cry and get very emotional all the time .this has gone on for years. I take mess for depression,my stomache(gallbladder has been removed due to stones and pain) Flicky legs and arms pain patches and paracetamol and trampoline I get what I can only describe as electric shocks in feet and hands .my hands also go in to spasms and lock very painful when this happens . I was very obese .But I had a gastric bypass in 2010 and that’s when they discovered my B12 was low and I was started on B12 injections at first 3 monthly then and and now every 8 weeks ( and for a few days I do feel more myself .) I do have fatigue were I will just go to sleep can’t stop it and then most nights don’t sleep tired but can’t sleep. The pain is the worse thing it’s all over my body my joints,muscles in my legs and arms and although they have replaced joint I still get pian in them .Anyway I am know thinking that all this may well be caused by the B12 not being right I have seen lots of doctors for all the different thing but never for all of the symptoms together They all seem to latch on to the depression. But I get tearful every time I see a doctor it’s like banging my head against a wall .I have had this (depression) for years or have I ? Sorry for the long post but I am at the end of my tether P.S I am now being sent to see a rumatoligist but they say I don’t have that .
AnnF says
Hi Yvonne,
Gastric bypass? If you weren’t deficirnt B12, you are now. Better to be at a healthy weight, though, and then deal with anything that comes up!
Besides B12, first, try to eliminate problems with your thyroid, pituitary, and any other endocrine gland you have. Second, I’ve been reading about the problems an overgrowth of Candida (the yeast in your body naturally) can do, so have that checked out. I know this is weird, but if you can, get your heart checked for holes. It’s always in the back of my head, because every once in a while, I hear a story of someone who had seemingly unrelated symptoms, until doctors found a “pinhole” in the patients heart, and once it was fixed, the person’s various symptoms disappeared.
B12 deficiency can cause all kinds of problems, unfortunately, bringing your levels up to normal doesn’t help fix what it helped break, but it will help you to feel better, and stop any more problems from occurring. If you can’t increase the frequency of your shots, at least take B12 supplements in between. Make sure you also take Magnesium, Zinc, Potassium ( but watch the levels), and B complex with Folic acid. In order to absorb vitamins, even the water soluble ones, you need to take them with some kind of fat — if you are not lactose intolerant, regular homogenized milk with the red cap will do. Plus, if you take them with food or milk, they usually don’t cause nausea. I know from experience, that some brands/forms of vitamins will give you GAS! If you take them at least 12 hours before you go out, you should be o.k.. If it doesn’t let up after a month, try another brand or form of a particular vitamin, like, oh, say, if supposedly easy-to-absorb Magnesium Citrate gives you so much gas you offend a skunk, then switch to Phillips’.
Fats are more important to your diet than modern medicine would like to admit. I know you are counting calories (understatement, right?), but if you can, add 2 tablespoons of olive oil, avacado oil or grapeseed oil to your diet. If you take the oil straight up, you will need to take a half a slice of bread right after in order to stop it from repeating on you.
A lot of people are claiming miracles after they take Turmeric pills for joint pain. Please, try drinking chamomile or Sleepytime tea 3 times a day for two weeks, and see if it doesn’t help ease your mind, help a little with that depression, and help you sleep. Two things I realized when I had trouble falling asleep or falling into a deep sleep: even though I felt warm enough, once I put on an extra blanket, I fell right to sleep, and, if I had a collar on my pajamas, I was a lot more likely to have trouble sleeping than if I had no collar. Which leads me to add, always block the light from stereos, cable boxes, alarm clocks, etc., and always wear 100% cotton to bed.
Lastly, try daily Yoga and meditation.
I hope this can help, even a little.
Nona says
This helps a lot. Thank you for writing.
Tanya says
You need an Endocrinologist
tnt3266 says
Hey Yvonne,
I found this on the web today .. Your diet after gastric bypass surgery!
After gastric bypass surgery, your body will not absorb some important vitamins and minerals. You will need to take these vitamins and minerals for the rest of your life:
Multivitamin with iron
Vitamin B 12
Calcium (1,200 mg per day) and vitamin D. Your body can absorb only about 500 mg of calcium at a time. Divide your calcium into 2 or 3 doses during the day. Calcium must be taken in the “citrate” form.
You may need to take other supplements also.
You will need to have regular checkups with your doctor to keep track of your weight and to make sure you are eating well. These visits are a good time to talk with your doctor about any problems you are having with your diet, or about other issues related to your recovery.
I hope this helps you too.
michael says
Your symptoms identical to mine re pain and electric shock feelings. Living in Australia was put on antidepressants. Moved to UK where a specialist took 5 mins to diagnose Fybromyalgia. An Aussie doctor I emailed said “that doesn’t exist” although the UK specialist gave me a whole book on living with and managing it produced by arthritis UK. A UK eye specialist (elderly lady) echoed that it didn’t exist but my heart surgeon, cardiologist and gastroenterologist say it does exist and is diagnosed via clinical observation rather than a blood test. Existing or not I am getting on top of it and it is months since I had a bad day. You will tell from the number of specialists I see that I have a lot of health issues but my local doctor (she is young and very on the ball) guides me constantly with nutrition etc and slowly we are unravelling the mess of issues and improving my life. You too may have many intertwining conditions but keep up the search. Incidentally, the book I mentioned is available online from Arthritis UK. Best wishes. Michael.
jen linda says
It sounds like you have food allergies. I used to wake up with tingling arms, swollen hands and bloating off and on. I went to Center for Advanced Med. and they took me off Night Shades (tomatoes, potatoes, peppers) b/c I could not digest them. They are very acidic. Also, my intestinal bloating went away when I went gluten/dairy free(couldn’t digest the milk protein, cassein. I would get heart palpitations too, but this got better at first with some extra potassium and cal/magnesium. I suggest you do a ten day elimination diet, w/ doc’s approval. You can do bone broth every day with green veggies. You may feel worse the first few days, but by day 7 or 8 you should feel better.
gg2493 says
i was diagnosed with vit b12 deficiency when i was 18.
had continuous pain in my left wrist and left calf.
when i take the injection the pain goes away and comes back in 5 days.
have taken more than 30 2 ml injections.
still there is no relief
gg2493 says
also i forgot to mention that i feel tingling sensation in my right thigh and upper left back.
my knees get cold very quickly.
my b12 level in 2012 was 180 and after 30 injections in 2 yrs it is 230 .
i am from india.
and a strict vegetarian.
should i take any other vitamins for efficient absorption of B12????
any tips ??
AnnF says
First, I have to say, that although many people do well being vegetarians, once you know you have vitamin defifiencies, particularly B12, you might want to think about eating meat. I am convinced that the best thing is to eat soups and stews, particularly ones that use blood and bone as well as meat, because so many nutrients depend on one another for absorbtion. This is more like do as I say, not as I do — my own diet is HORRIBLE! No stews, and I don’t suppose you would call instant Ramen soup.
More to the point, if you only feel the effects of your injections for 5 days, you really should have them once a week. You will have to take B12 for the rest of your life, sorry. Unless, of course, you start eating meat and your levels shoot up. Even then, I would still recommend taking a tablet once a day.
I take the B12 you can dissolve under your tongue (3 a day for 15,000 micrograms) but somebody here mentioned the B12 oils which are supposed to be better absorbed.
Make sure you take other vitamins, such as Magnesium, Zinc, and Folic Acid as well.
Good Luck!
gg2493 says
thanks a lot.
can you help me with self injecting vit B12.
the amount of the liquid and the ideal place for injecting?
any precautions i should take?
and also the procedure?
AnnF says
I have never taken the injections, so I have no idea. Others here might write back about that. In the meantime, try YouTube. It always surprises me howmuch different info they have on there.
I was just thinking, with the cold knees, you might be deficient in iron as well. I know the one from animals is better absorbed, but I haven’t had any problems with the regular ferrous sulfate. Just take it with vitamin C and zinc.
gg2493 says
once again.thanks a lot.
really appreciate your help.
Donna says
I have Hashimotos Thyroiditis and severe Graves eye disease. My labs just came back and my B12 was 299pg/ml. After reading this article I an assuming that is low. What type of B12 would you recommend to enhance my levels…
yadab poudel says
HI, I found this site very helpful for me. Since last 10 years I have been feeling very tried, always feel sleepy, can’t getup from bed in morning. I did lots of tests and couldn’t find any thing.poor apatite, always looks like lazy. I was scared about this.Last year I came USA and I went to the hospital and it is identified as vitamin B12 deficiency. My B12 level was only 98. Since then, I took shot every week for one month and once a month for next four month. I am very new to USA. I don’t know the treatment process here. I had Free insurance in New York. Now I moved Texas due to my work and stopped getting shots and started getting oral supplement ( 1000 MCG Daily) I still feel fell same pain and tried. Because of this continuous pain (specially in the feet) I couldn’t sleep properly for couple of days and had to visit even mental doctor. Now I am also having sleeping pills as prescribed by the doctor. Can anybody please help me how long does it take to have effect of injection/ Tablet of vitamin b12. How long does it take to get well . How dangerous deficiency is. I am new immigrant here. I am scared lot regarding my health as I need to do physical work for long hour even for my survival. I am mentally also disturbed because of this problem. My age is 30. I am sorry for my bad English
sunshine 92 says
I’ve been doing a lot of research recently, and most of us cannot absorb b12 from pill form. Go get regular injections in a local clinic. Should be around $35 per shot.
yadab says
Thank you so much for your information. If I again start getting injection normally how long does it take to feel better.
Rudy says
Part II Yadab. Sorry I disconnected by mistake. I went to HEB and bought Nature’s Bounty Vitamin B12 Quick Dissolve Methylcobalamin 1000 mcg. My doctor told me this is the BEST. It is “sublingual”, which means you put it under your tongue and let it dissolve. It is a small pink pill and dissolves very quickly.
From reading my google sites, I have also started eating red meat again (grass feed cows), eggs (free roaming non-caged), beef liver, natural salmon, tuna, scallops (not farm bred), and organic milk. Two weeks ago, Dec 8, 2014, my doctor ordered another blood test and my Vitamin B12 is now 650 (from 320 in Aug 2014).
I am feeling so much better. The semester is over and I can now run and exercise without too much pain. It takes time. I still feel tired and my energy is not 100% for running , exercising – but I feel is is 75% from one year ago. I will continue my B12 vitamin and good diet (meat, eggs, fish, milk, cheese – all natural, organic). My next B12 blood test will be in Mar 2014 – but I feel much better now.
Your culture may be vegan/vegetarian, and that will be a problem if you can’t change that (B12 deficiency is major in vegan countries). In that case, maybe two B12, 1000 micrograms a day would be ok. My doctor told me two vitamins a day is ok during treatment because our bodies need it at this point and it can’t harm.
Note: there is nothing else wrong with my health according to the tests, just a major diet change with no V-B12. Hope this helps.
AnnF says
Rudy,
Check your vitamin bottle. I’m pretty sure that Nature’s Bounty is Cyano, not methyl. If it’s working for you, fine, but I try to avoid cyanide, even when small, because a lot of things have it in, and it builds up. I use Natural Factors.
I found out I needed Magnesium as well. I thought I was getting enough through my diet, but I wasn’t, so I think everyone should take Magnesium as well. Just be prepared, some of them give you GAS.
Eric says
As I recall (from the shelves at my own H-E-B–like Rudy, I’m an Austinite), Nature’s Bounty actually sells *both* forms, presumably for the simple reason that there’s a market for both. (The one virtue of cyanocobalamin is it’s cheaper to synthesize, but the bioavailability frankly cancels that out.)
Bec says
A B12 level below 100 is a severe deficiency and I would not recommend taking sublingual in preference to injections. Even though sublingual bypasses the stomach absorption, you are still only getting small amounts of B12 – certainly not enough to treat a severe deficiency. Please find a doctor who will administer the shots again – once you start injections, you should be on them for life.
David I says
If you have been doing a lot of research, perhaps you should check out the Cochrane Reviews. The general conclusion from carefully controlled and reviewed studies is that oral administration CAN work as well as injection.
Rudy says
Hi Yadab,
I am from Austin, Texas, and also in treatment for Vitamin B-12 deficiency. I hope I can help you – there is hope. I am male and was always active in sport and good, health food, and vitamins. In Jan 2012 I started studying at college and working full time every semester. My diet changed – I became a vegan/vegetarian – no red meat, eggs, fish, cheese, milk. I ate lots of salads and chicken, turkey. Working so much and studying – I often ate from cans and junk food. I also stopped my vitamins.
Last year, I started to feel sharp pains in both my legs and feet. Like pins and needles. In fact, they felt like they were on fire. I also felt nerve sensations in my lower back – I could feel electric currents in my lower spine. I was so scared.
I could not walk very well either. I would lose my balance when walking, and always the “fire” in my legs and feet. Many times my feet and legs would jerk because of the electric current. I would become so tired and could not work in gym or run (I would just lose my energy).
In Aug 2014 I FINALLY went to my doctor of many years and told him. He did exams on me, and had me walk for him, and I lost my balance. I told him my history and he did a blood exam. I found out my B-12 was at 320 (normal is between 1000 – 1100 !!). In American, doctors still think levels are at danger below 250. In Europe, the danger level is below 500. I really thought I was going to be paralyzed and never walk again.
He was a smart doctor. He did not want to give me injections. He started me with 1000 micrograms of B-12 Methylcobalamin right away.
GW says
How are you feeling now Rudy?
Cathy says
If you ate chicken and turkey, you were not a vegetarian/vegan, because chicken and turkey are meat, and vegetarians and vegans do not eat any form of meat. Seafood is also meat, so if a person eats seafood they are not a vegetarian.
You are still classified as a vegetarian if you eat dairy and eggs, but vegans do not eat dairy and eggs. If you are a vegetarian for ethical reasons, an ethical vegetarian, then I can’t see how such a person could justify still eating eggs, since ALL hatcheries, cruelly kill all of the male chicks, including hatcheries sourced by free range egg farms.
Hatcheries have been caught suffocating the chicks crammed in large plastic bags and then just tossing them like that in the dumpster because it’s too much trouble and cost to bother gassing them, which is also hideously cruel and vile.
Sara says
I need to find a doctor who knows this, plead help!
AnnF says
Hi Yadab,
I started taking FOUR 5,000mcg pills a day, so 20,000 mcg a day, and it was about 2 weeks before me feet and legs stopped hurting. I started with Cyanocobalamin, and have now switched to Methylcobalamin. I took the four pills for 2 years, then went down to one pill, but have had to go back to taking two a day. someone here writes about the oils, but I haven’t tried them yet.
Try taking Calms Forte by Hyland in order to help you sleep. It’s an all-natural pill. It used to be better, but it’s still o.k., or simply try chamomile or Sleepytime tea — you’d be surprised how well they work.
Be careful of any kind of prescriptions you are taking. I took one form of Blood Pressure pill, and noticed that I was jittery, depressed and paranoid, so I switched pill type right away.
Angela says
You may want to either check your vitamin D or just get some subligual vitamin D at least 2000IU, I take 5000iu.. Vitamin B12 and V. D kind of go together.. if your deficient in B12 and D, taking just one of those isn’t going to help you.. If someone is deficient in Vit. D then they will always be deficient in B12 and Vice Versa.. usually not always of course.. Getting out in the sun isn’t always going to work either.. if you came from a Country where people work outdoors and it’s always sunny and you come here to the US.. you will surely be missing your usual Vt. D (which is actually a hormone by the way, and once it is low then all your other hormones get thrown off).. I bought myself a Sperti Vt. D sunlamp and take Vit. D by LA Naturals.. it’s the best I have found..highly absorbable.. good luck
Cathy says
Yadab, I agree with sunshine. If you have an absorption problem, you will need the injections, and you will need to monitor the B12 levels with regular testing.
Your feet might be hurting if you are working on your feet every day and constantly lifting things without a shock absorbing mat to stand on and/or without proper footwear. In this situation you can develop some kind of bone spur and even small fracturing of the bone. I had this happen to me and I had to do really firm massaging to the area on the bottom of my feet that were hurting, and switched to footwear with air cushioned soles that solved the problem, because I didn’t have mats to stand on at work. Target and K-mart usually sell air cushioned sneakers really cheap if you can wear sneakers to work, otherwise a shoe with a lot of cushioning in the sole, and you can add sports insoles too, which I add to all my shoes for shock absorption to prevent foot pain.
Also, in your situation, you may need a good general vitamin and mineral supplement to support your functioning because of the extra demand that your work schedule is having on your body’s entire system, which could even be contributing to the problem of absorbing B12. You don’t need an expensive vitamin and mineral supplement, just a good broad spectrum one that has everything in it.
Lastly, if you haven’t already, I urge you to get your thyroid gland functioning checked. My aunt and mother both had hypothyroidism (underactive thyroid) and it was a downhill slide of fatigue and tiredness that ended up with not being able to get out of bed. Of course fatigue and tiredness are symptoms that mimic symptoms of a whole range of things, but thyroid malfunction should be tested for. I hope things improve for you.
John says
excellent article, Vitamin B like Vitamin D has numerous powerful effects on the body. Women are especially vulnerable to vitamin B deficiency. You can find supplement give away’s at supplementadvisor.org However eating foods high in vitamin B is also helpful (liver, fish, fortified cereals)
Laura says
I’ve had B12 deficiency since my teenage years. My mainstream doctors would give me B12 injections, get my levels back and then stop giving injections. Since seeing my Naturopath in June, I’ve been diagnosed with pernicious anemia. My levels were below 200 (187 in fact) and I was having serious neurological symptoms … many of the ones mentioned in this article. I started off receiving weekly shots of methylcobalamin. I’m now getting them once every 3 weeks and the majority of the neurological symptoms are gone now. My insomnia and anxiety are almost completely gone now … it’s amazing how much a deficiency can affect.
GW says
Hey, glad that you are feeling better now.
How long did it take for the neuro symptoms to recede?
Frank says
Please help! My wife started having seizures a few years ago that present as grand mal seizures, but she is totally awake and can communicate. She has had every test you can think of. Recently, we were working with a neurologist and a rheumatologist and found out her b12 levels were insanely low and that that could possibly be the reason for the “seizures”. She started with sublingual b12, because the rheumatologist suspected that she was not processing the b12 inher intestines. Her levels did not improve. We started injections and they seemed to work at first but slowly the results diminished, with the only result be back acne. She was re tested and her levels were 83l…nmol/L. I don’t know how to read that! All of her other results were in pg/ml and she was at 186 then. She is in constant pain-nerve, muscular and joint. The rheumatologist just informed us that there’s nothing else she can do that we need to see the neurologist. My wife is done, she is so upset and depressed she is suicidal. I do not know what to do. She does not want to waste any more time with another doctor or waste our time and money. If anyone knows anything or can help I would be eternally in your debt!
Madge says
Hi Frank, it sounds like the rheumatologist was part of your solution. Chronic inflammation such as in rheumatoid arthritis eventually leads to B12 deficiency, which can explain the symptoms. Once you are deficient, oral or sub-linguals are not really a very good option. If she hasn’t responded to the B12 injections, it was probably because it was cyanocobalamin, not methyl/adenosyl cobalamin. Many people can’t process cyanocobalamin (a pro-vitamin) into the two active forms adenosyl and methyl cobalamin. Now the problem is that after the injections, she will show up as having very high levels of B12 in her blood. This is a real reading, however, the B12 will be the B12 that was injected. Thus, if it is cyanocobalamin, what you measure in serum will also be cyanocobalamin, not the active adenosyl and methyl cobalamin. The next problem is that if she can’t actually process the cyanocobalamin you will have to wait until the levels drop until she gets the proper Adenosyl/methyl B12 (cobalamin). As she was so low, she will need months of daily injections to get better. Alternatively you could use the topical Adenosyl/methyl mix from b12oils.com , which I have used before. It is probably best to contact enquiries there and ask for their help
Lynn_M says
Frank,
I agree with Madge that her B12 injections were likely cyanocobalamin. People with common genetic polymorphisms can’t metabolize cyanocobalamin and need either methylcobalamin or hydroxycobalamin, which the body uses in the cytosol of cells. People also need adenosylcobalamin, which is used in the mitochondria. Using the topical B12oils that Madge mentioned may be the easiest course of action right now, unless you can get a doctor to prescribe high dose methylcobalamin injections. Adenosylcobalamin can be taken orally.
Was your wife tested for pernicious anemia, where the body makes antibodies against intrinsic factor? That could explain why her B12 was so low.
Your wife might also have a deficiency of B12 in her central nervous system. That will require very high dosing of B12 to overcome. To learn about that, go to forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/ and search on “central nervous system” for posts by Freddd.
The serum B12 test measures both active and inactive forms of B12, and it measures what is in the blood, not in the cells. A high value doesn’t mean there is enough of the active transcobalamin form, especially if there is a CNS deficiency. As long as your wife has symptoms, the serum B12 level is probably meaningless. A urinary MMA test is a better test than the serum B12 test.
Melissa L says
HI – Any chance your wife has been test for the MTHRFR mutation that affects how B vitamins are metabolized? I have both mutations (C667T) so I have trouble metabolizing folic acid and B12 especially (estimates range from 5% – 30% efficient). I take methylcobalamin (B12) and methylfolate – bioavailable forms – and avoid regular B12 and folic acid supplements (or fortified foods). Note: I have learned there are very few doctors aware of the mutation or its implication beyond pregnancy and neural tube defects. BTW there are estimates that 30-50% of the population have one mutated gene and 5-10% have both copies mutated.
Prayers and warmest wishes on your search and healing!
Donna says
No caffeine, no alcohol, no processed foods. Protein and good fats at every meal. No more than 2 starches a day, not to eaten with protein. A cup of homemade ginger tea (3-4 tbls of chopped ginger steeped for 10 minutes) 1/2 hour before meal, no fluids consumed with meal. Cabbage, sea salt, tomatoes, olive oil, home made nut milks, sardines, clams, beef liver, plain yogurt, 2% milk. Vitamin supplements: iron, cod liver oil, ( vit D depending on where you live), K2 and a zinc tablet before bedtime.
I also take enzyme Q10 and brewer’s yeast tablets. Breakfast: Sunflower seed/almond milk, vegetable and cheese omelet with half an orange. Snack: glass of milk or a small bowl of oatmeal. Lunch: a quick clam tomato sauce over a large bowl of lettuce. Recipe: 1/4 – 1/3 cup of olive oil med heat add one peeled chopped carrot sauté for 3 minutes add 4 – 8 minced garlic cloves, 30 seconds later add two medium chopped tomatoes, 1/4 tsp salt, 1 tsp dried oregano, 1 tsp dried basil, 1/4 tsp chili pepper, some ground black pepper and 1/4 cup white vermouth simmer on medium for 4 – 5 minutes. Remove from stove, add 1/2 can of drain clams and juice of half a lemon and stir. Pour your sauce over bowl of washed and dried lettuce. Optional finely grated Parmesan cheese. This recipe also works with a can of sardines, replace carrot with 1/2 a fennel bulb, less 1/2 a tomatoe and 1 tsp of fennel seeds. Snack: Julia Child’s potato salad made with white vermouth. Dinner protein and veges. Snack: 2% milk.
Never give up hope! 🙂
Lynn says
I know this is an older post but I am doing my own research for me and this came up. However, in reading your post this sounds exactly like what my daughter-in-law was going through and it was diagnosed as Celiac disease. She cut out all gluten and within days she was feeling much better. She too had suicidal thoughts from the pain being so bad. This may not be the case with your wife, but you might want to check it out if you haven’t already.
lis says
i too believe that celiac disease can cause this. i have learned that i am allergic to wheat. i was wondering if it could be a gluten allergy. a few days after stopping wheat (and gluten) my nerve, stomach, and heart problems went away. my nerve pain and twitching, stomach pain, and heart palpitations were scaring me. my heart would beat rapidly, stop (skip few beats), continue slowly, then quickly, etc. my stomach would cause me so much pain, swell up, felt like it was full of razor blades.. since i was a child i remember having pain after eating bread, didn’t know it could be an allergy. i went to the doctor who (i know i’m not the first one to experience this) basically said i was making it up. i never thought the heart and nerve problem could be related to wheat. i stopped eating wheat because of my stomach. i didn’t know it would solve the other issues. it’s been a few months of not eating wheat and i’ve had a few accidents of eating wheat. usually i first notice when my muscles start twitching. then i realize i had wheat. maybe it allows b12 to be absorbed, maybe it’s independent of b12.
Denise says
This is not intended to be disregard the tremendous suffering your wife is experience but your post reminded me of this video. Some argue that conversion disorders do not exist but the mind/body is an infinitely complex system so who knows.
Veronica mcguigan says
My daughter starting loosing her eyesight about eight weeks ago an after a lot of tests the dr has said he thinks it down to her b12. She had to get injections for 14 days every day an now twice a week until things improve but the eyesight hasn’t got any better. She is only 19 so this is a very worrying time for everyone, we have been told there is no guarantee the sight will return to normal
Helene says
It may help to find a doctor who works with genetic methylation and the MTHFR genes to see if they can help your daughter with the B12 problem. There are companies that do genetic testing that could refer you to a doctor.
Lynn says
What type of vision loss is she experiencing? Has she had a lumbar puncture to determine her intracranial pressure? Many folks with Idiopathic Intracranial Hypertension (IIH) seems to also have low B12 (not sure why), but one of the symptoms of IIH is Papilledema. IIH is often misdiagnosed, and incredibly frustrating and painful for the patient and loved ones. I hope it’s just B12 – much easier to treat, but vision loss is not something to sit around waiting idly hoping for a solution.
Bartybear says
A friend of mine had an episode where she lost her sight for some time then returned. At the time, they put it down to the fact that she was pregnant. A few years later she was diagnosed with an under active thyroid and told that her loss of eye sight will have been linked to this – maybe worth getting tested? Must be very scary for your daughter I hope she finds a resolve x
Molly Malone says
I have no real idea what has happened to your daughter, but please also consider taking a look at other vitamin deficiencies as well, notably vitamin A. Many people cannot convert carotenes into vitamin A efficiently, so they become deficient – this particularly applies to vegans and vegetarians. Only animal foods have actual vitamin A in them, and supplements almost all have synthetic – not as good. The best source I can find seems to be cod liver oil that has not been stripped of its vitamins in the processing techniques. There are only a very few, most American cod liver oil has synthetic vitamin A added back in at the end of the process, unfortunately. Synthetic may be better than nothing, but the real deal is always best.
You can find info here: http://www.westonaprice.org/health-topics/cod-liver-oil-basics-and-recommendations/
And here: http://www.rositarealfoods.com/cod-liver-oil/2-artisan-extra-virgin-cod-liver-oil
And here: http://www.ratfishoil.org/rosita-ratfish-oil/about-ratfish-and-ratfish-liver-oil This is not cod liver oil but ratfish liver oil. This is what I use.
You can find cod liver oil here:
1 – http://ratfishoil.net/ This is from Norway, not cheap, but excellent. I use their ratfish oil, and my kids take it as well.
2 – http://www.greenpasture.org/public/Products/index.cfm This is fermented cod liver oil, very good for health, but very strong tasting. I used it, but my kids refused to take it.
3 – Carlson’s cod liver oil is a good second choice, and is available at market’s like Whole Foods and co-ops and health food stores, as well as online, like Amazon.
I wish you the very best.
Rekha Sharma says
Dear Veronica and well wishers, My parents and I have experienced temporary vision loss/complaints/weakness of some sort at varying levels. Both parents suffer from other underlying problems, and I was recently diagnosed with B12 deficiency! Please give “schizandra berry” a go for your eye problems as it’s worked a treat for us. It also helps aid a healthy liver (which we all know stores our B12). To good health x
AnnF says
Can anyone help me?
I don’t know if it’s because of the B12 deficiency or something else, but I have asthma and sinus problems. The problem is mucus ( sorry, gross I know) that goops up my whole respiratory system and even traps food on the way down.
Any vitamins I should take, teas I should drink, foods I should eat or avoid? Anything? It’s kind of the last thing that’s holding me back, but it’s really a big thing.
Amber says
Hi Ann, you might want to check into Patrick Mckeown’s dvd/book/cd set called “Buteyko Clinic Method 2hr DVD, CD, Manual; the Complete Instruction to Reverse Asthma…”. It’s available on Amazon.
I bought it for a reason other than asthma, but it’s really directed at asthma sufferers. I find the excercises helpful so far and I believe will help you resolve your symptoms.
AnnF says
Thanks. I look for it.
Robert says
My wife had sinus problems all her life and two years ago it was so bad that she was coughing for four months non stop. Every winter she was on different kinds of antibiotic and her nasal was always congested and very weak as a whole.
As a result of her sinuses she got pneumonia few times in past and consequently she got scar on her lungs. Two years ago pathology expert suspected of aggressive cancer in her lung, but thank God he was wrong. As a result of that we went to a lung specialist and the doctor diagnosed my wife with severe sinusitis which was the cause of her pneumonia problem.
They put her on heavy antibiotics, but after clearing this time, I thought enough is enough, and after long research on internet I asked my wife to start to take (Bragg)Apple Cyder vinegar with mother in it, and as a result of that, for the first time in her life she is free from sinus problem for last two years.
She was a frequent visitor to doctor for common cold and influenza but thank God for this simple solution she hasn’t visited doctor since two years.
She started taking one tea spoon mixed with water three times a day before breakfast, lunch and dinner.
Hope this help. God Bless.
AnnF says
Robert,
Thanks! I kind of do take a tablespoon of Bragg (the best!) with water and honey, but only once a day. Though I like the taste, and it makes me feel pretty good, I’ve unfortunately only taken it sporadically. I think I’ll get another bottle today and stick with it.
I started a cold on September 3, and it’s just going away now. My sinuses still hurt. So, here’s hoping it works as well for me.
Bee says
I can’t take Braggs for my coughing(asthma/mucus)because I also have Barrets(esophigyle erosion)it burns too much.Has anyone tried ACV tablets with any luck?
AnnF says
Bee,
I’ve taken Swanson Double-Strength Apple Cider Vinegar that I bought from Amazon.
I haven’t taken it for long enough periods of time to tell how good it is, though it does give me that calm feeling that Bragg gives me, but it received good reviews on Amazon.
By the way, I don’t know if it still helps anything when cooked (I don’t see why not), but I use it in things like pancake batter. The batter smells of vinegar, but the pancakes don’t taste of it. They taste gooood.
AnnF says
Bee,
I forgot to say that the pills helped my heartburn. The one time, they worked instantly, even better than Tums. I figured I’d let you know if they helped with that, they must be doin’ sumpin’.
Bee says
Thanks AnnF
finndian says
The only supplement that is proven to work break up mucus that I am aware of is NAC (N-acetyl cysteine).
I take it at higher doses than University of Michigan suggests but you can try what works for you.
http://www.uofmhealth.org/health-library/hn-2888006#hn-2888006-uses
AnnF says
finndian,
Thanks for your help! I looked up NAC on Amazon, and quite a few people complained about stomach upset, so I think I’ll wait to see how the Apple Cider Vinegar and the breathing exercises go, but I’ll definitely try NAC if things don’t improve in 6 months.
AnnF says
Thanks so much for everyone’s help. My inhaler barely works, and this past month and a half has been really bad. I must admit, I have been pretty lazy, and not followed through with a lot of health plans, but your quick replies have made me determined to get better, starting today. In six months, I’ll let you know how it’s going.
AnnF says
Maybe somebody mentioned it before, but has anyone seen “Living With the Fog” on YouTube?
Tanja says
I have the opposite issue- my levels of B12 are very high -1300 per last blood test done (without supplementation). I have a huge gut issues for already 8 months (not digesting anything without help of digestive enzymes) and everything started with Advil pill I took on an empty stomach. After this, my digestion completely stopped. Having all this indigestion/malnutrition issues , one would think that I would not absorb B12 as well. Homo-cysteine levels are normal and I don’t have MTHFR gene mutation. The blood tests don’t show any sign of malignancy (often connected with high levels of B12).
The only thing I could think of is that my liver is not working properly (although standard liver tests are OK) and it’s dumping B12 into my blood instead of inserting it into the cells so the test show high levels although my cells are maybe lacking B12.
Any other ideas?
AnnF says
Did you just have a blood test, or MMA, or any other test mentioned here? It could be just that the test you took is at fault. You are right to be concerned. It is strange that with such a bad digestive problem that any test would show a high B12 level.
As for your stomach issues, have you thought of a cleansing fast done at a facility? I have heard quite a few stories about how it can release toxins and “reset” your system. However, I would wait for a few more months to see if your body slowly but surely heals itself.
Tanja says
Thank you Ann for responding to my post.
This B12 level was determined by routine blood test- so I guess it’s total B12. I didn’t get MMA test as I didn’t know it exists- I will have to check with my FD if I can do more specific testing.
As for the digestive issues- I didn’t try fasting diet as I lost 30 lbs because of all of these digestive issues (I had 90 something lbs on 5”5′ heigth) and I regained half of it back now….but when this all started I barely ate anything for 2 weeks and it didn’t help at all:)
Answer is somewhere there I just need to keep searching for it.
AnnF says
Yeah, I don’t know if barely eating and fasting are the same thing, I would assume they are. Any info I have on fasting is anecdotal, so I don’t know the specifics. It should be done as one of the last things to try, I don’t know why it popped into my head right away, maybe because I heard when something stops working, fasting helps to start it again.
Glad to hear that you’re slowly coming back. I am still puzzled about your B12. Maybe your liver is releasing extra B12 in order to help heal yor stomach, or to compensate for it, or maybe your levels were even higher before. Let me know if you find anything out.
Lou says
Hi Tanja,
I have really high b12 – been tested for blood disorders like PV and leukemia and liver function is fine. Did you ever manage to get a resolution/answer to your high b12?
Dorie Tiseth says
I sure do have comments. My b12 level on the CBC test is more than 1500. A few years ago my b12 level was at 235 and my doctor put me on b12 shots. Getting an injection every month did not do the trick. I was exhausted and dizzy. I asked to have injections at least twice a month. I became so much better. By big mistake was to quit the injections and started on b12 tablets. I was so ignorant and did not know that the tablets were not being absorbed through my small intestine. For the last year and a half stayed at home because I suffered from sudden bouts of diarreha
Dorie Tiseth says
Sorry I was cut off. Anyway, I had many symptoms of b12 deficiency fatigue, dizziness, anxiety. I went many doctors who practically threw me out of their office because my b12 levels were so high due to taking high doses of tablet b12. I begged to have a parietal antibody cell test and the folate which both showed problems with the absorption of b12 through the small intestine and that despite the high levels of CBC test I was b12 deficient.
I have pernicious anemia in my family. Unbelievably, the doctors still deny me b12 shots. I am about going crazy. I was able to find a b12 supplement that absorbs more easily and some of my symptoms have subsided. I know that injections are the true answer for helping my b12 problems. Keep your fingers crossed for me I am going to another hematologist, hopefully he will give me the help. I need.
Tanja says
Hi Dorie,
You have another option available : B12 patches , you will baypass the gut this way. I don’t know if the patches really work but a lot of people say they helped them.
And there is also a sublingual B12 spray.
Madge says
I use the oils from http://b12oils.com/Home.htm
These are great. They have even been shown to be of great benefit to people with acute B12 deficiency such as is found with chronic fatigue syndrome. You simply rub them on your skin. They gradually release the B12 over hours and hours. Much easier to use than the Patches, which I have tried and which didn’t work
Bee says
I have the same issues as my B12 is over 2000 no suppliments at first.Been doing injection now once a week.Forget the hematologist go find a N.P. to prescribe it.Down side it’s a self injection.No biggie after a couple of times!
AnnF says
Bee,
What’s an N.P.?
Andrea Wilson says
NP = Naturopath or Naturopathic Practioner/Doctor (a type of Functional Doctor). You will be able to get B12 injections from them.
AnnF says
Thanks.
AnnF says
Thanks. I’m not too good with the abbreviations. Every time I see MTHFR gene on here I think, “What potty mouths!…oh, it’s the…oh, o.k.”
Laura says
Have you had your lithium levels tested? That helps transport B12 into the cells. I would also suggest getting a DNA test from a place like 23andme. I did and I found out I had genetic errors that cause me to be unable to convert b12 into methyl b12.
Preeti Awasthi says
my b12 level is 125 pg/ml is it harmful
KK says
You are deficient in B12 – in US anything under 300 is.
And if you ask EU/Japan – anything under 500.
I suggest starting with B12 shots or big doses of sublingual methylcobalamin ASAP.
Ann Ling says
I have to have B12 injections, and will have to have them for the rest of my life, my Doctor is not very knowledgeable on the subject and feels normal levels should be between 200 and 600, I was so ill with a level of 192 I was falling over and so tired I was unable to function I am a young 77 year old and believe these levels quoted are much too low. Ann
danny litton says
Please contact me about your story on Vitamin B 12
Tracy says
Ann, I totally agree that the levels used are much too low and need to be revised. My level was 196 and I was severely ill, fatigued, depressed, shooting pains in my legs, lost a lot of weight, and had to use a walker. Referring to the minimum of 200, my doctor said he doubted that my slightly decreased B12 level was causing my symptoms. Wow was he ever wrong about that!
I’m so very thankful for the internet, because I did some research and learned that my symptoms matched those of B12 deficiency. I knew that had to be what was ailing me. I had to be a real pest to get my doctor to start treatment.
Marilyn Cody says
Sadly a lot of drs are not aware of the genetic mutations MTHFR with Vit b 12 .Both my husband & I have been diagnosed.So an infant can be born with it especially if the mother is a vegetarian.My lifesaving book was Sally’s book Could it be B12 ? Just so frustrating when I have seen 15 drs including 7 specialists waste of money A dr at Ed suggested because of my symptons but was dismissed as level was 290 in norm range.My husband almost killed himself with memory loss .I just wish we could get it out there istead of being told its in your mind hardly with severe tinnitus numb feet approx 25 other symptons.
Stephen says
That is a revelation to me that tinnitus can be a symptom of Vitamin B12 deficiency! I have recently been diagnosed with a very low Vitamin B12 level. My Naturopath was amazed I could still function normally with the levels I had. But my tinnitus is pretty bad. Perhaps with me that is where a low Vitamin B12 level has revealed itself.
Ron says
I was diagnosed as being anemic when I was very young. Maybe 8 or so. About 30 years ago my B-12 level reached a low of 75 and I was having problems remembering where I was going, almost falling asleep at traffic lights, and not remembering peoples names. I also was getting short and upset and having heart problems. I went to several doctors and no one checked my B-12 levels. One day when I was driving on the freeway, my vision became double and I had to close one eye in order to get off safely. My wife and I spent several days going to various doctors, when a neurologist finally discovers I had a b-12 deficiency. They started me on immediate injections and told me I would have to take them the rest of my life. I was told that my body destroyed any B-12 orally and that my body no longer produced it. I found that when my level was over 1000 I felt best and had more energy and strength. Because of health insurance I have had to switch doctors. So far I have had to train 4 different ones on my condition. Perhaps it would be good for them to teach this in medical school. I did have the same problem walking when this started as many of you. Everything was on my left side and that is the way I kept walking. My wife had to hold me by the belt to keep me going in a straight line. When my level of B-12 went up, I was able to correct the nerve that controlled the eye and get ride of the double vision. It took about 8 weeks.
Ron says
I should have mentioned, that I am now 73 and my son also has the same problem.
Christy says
I was diagnosed with a B12 deficiency at 8 years old. My teacher called my mom to tell her there was something wrong with my health, and it was discovered I was severly anemic due to a B12 deficiency. I was given B12 shots at first but since I was needle phobic, I ended up taking prescription B12 pills. I am now 40 and take B12 pills to this day. It is a scary thought to know that if I had been born just 100 years earlier, I would most likely not have survived to adulthood.
Zowiezombie says
Hi there,
I have what my MD is calling neuropathy in my left arm. It tingles and there’s a spot that itches although there’s nothing there to be itchy. It kind of travels down my arm and sometimes feels kind of like an electric shock. She’s never done any tests just said that’s what it is. After reading about B12 and how people who take acid reducers and Metformin have a higher chance of their levels being depleted I decided I should have it checked. I just got back the results on just a straight up B12 test and the result is 540. I’ve read on some websites that even though the blood test says number is normal that it’s still low. Does anyone know? Could the level I have still cause neuropathy? I’m considered “pre-diabetic” my A1C is 5.3. Thanks for any ideas!
Madge says
Hi There, your B12 levels would not normally be considered to be low at over 500, but it depends if you have been supplementing and what you have been supplementing with. Other causes of peripheral neuropathy can be low intracellular folate, low B group vitamins in general, and low vitamin D. Your intracellular folate should be above 7 ng/ml, whilst with vitamin D, it should be as high as possible (.50 ng/ml).
Zowiezombie says
Thanks for the response Madge, no I hadn’t been taking any vitamins except for Vit. D. Before I started taking the D years ago my level was 8. So, I guess I need to ask my doc to check my folate then. I’ve started supplementing some B12 now just in case. It’s just some cheapy stuff I got at the drug store. 5000mc I figured that might help some even if it’s not a better brand. 🙂
Madge says
Hi Zowiezombie, looks like you have a bit of sleuthing to do. If your genetic profile is normal it will be different to if you have methylation associated mutations. If you are deficient in B12 you will have to try to work out why. If you have a vegan or vegetarian diet, then it is quite simple, you need to supplement with B12. If you are hypothyroidic (and you will need tests to determine this) you will need to fix this. Folate and B12 are very inter-related in how they work together. It is actually quite hard to get enough folate if you don’t eat lots of green leafy vegetables. If your genetics is fine then normal folate will also be, but if you have methylation problems, particularly MTHFR, you will need 5-MTHF (deplin). The easiest thing will be identifying why you are deficient.
Rose says
ZowieZombie…From what I’ve gleaned from the internet, the serum B12 test doesn’t differentiate between active and inactive B12. Your result can actually be up to as much as 90% inactive B12. I have ‘failed’ all my B12 tests. They all come back as normal to high B12, but my RBC count was as low as 3.8 at one stage, MCH and MCV levels were both slightly elevated, I felt like a rag doll, had no energy, just couldn’t function at all unless I took transdermal B12. GP swears I don’t have a B12 issue even though I now have a swollen tongue. I am doubling my dose of B12 in case I’m just not taking enough. It would be a big help if doctors would go back to the old ways and read the symptoms. Numbers on a chart are totally useless IMHO.
pam says
@Rose,
that is very interesting.
once i was diagnosed with severe anemia (RBC was also like 1/2 of lowest normal & many others also abnormally low;
my B12 was really high
(800 i think; i don’t remember the numbers — dont’ have the test results handy right now)
i was tired all the time & hair was brittle & thinning.
then i ate liver everyday for 2 months & finall bright it to low end of normal.
mmm i wonder if my high B12 level was “inactive” so even it was high.
danny litton says
Please contact me about your story on Vitamin B 12 I also have a story that has helped me a lot!!!
doe says
Is it possible to list the new posts first?
AnnF says
Should I take my B Complex containing Folic Acid and C, with my B12, or some hours later? I know B12 travels with folic acid, and was wondering if that’s a good thing, or if they have troubled separating.
Also, all my life I feel sea sick whenever I read. Does anyone know if that’s B12, or something else, like some form of dyslexia? I can read well, it’s just that I feel sea sick.
Laurie says
Ann, I just have to chime in here and tell you to go google Irlen Syndrome. My daughter has it and it made a huge difference in her life when she started wearing her special glasses, and later, contact lenses. I think it’s something that too few people are aware of, and I hope the info helps you.
AnnF says
Laurie,
Thanks for the info. I looked very quickly, but I don’t think that’s it, because it seams that the quick info I looked at pairs it with trouble with reading comprehension, or some other learning difficulty. The only problem I have is the nausea, but I definitely will look further into it. I’ve had sinus problems for a long time, and I’m kind of thinking that is really what it is. However, I saw a show — “The Incurables”, I think — and a man had problems reading, along with a feeling of motion as he tried to concentrate on the words on the page. He was diagnosed with dyslexia, but found a doctor in California that prescribed a certain color glasses for him to wear, which make his dyslexia go away. Are your daughter’s contacts tinted? Was her only symptom the feeling of movement? What type of doctor can diagnose this?
Laurie says
It’s thought that Irlen Syndrome may be a form of dyslexia, so the man in the movie being helped by colored glasses would make sense. My daughter hated to read because it caused her discomfort. She would get headaches, preferred to read in the dark, and although brilliant, she had a lot of trouble with comprehension because of what she perceived as movement of the words on the page. The end of one word would “run” into the beginning of the next sometimes. Florescent lights are the worst! My daughter’s contact lenses were specially colored (several layers of colors, in fact) and looked light gray. She actually no longer needs them because she learned over time to adjust and be aware of circumstances in which she might have a problem. After struggling to get through 8th grade, she went on to be graduate High School as Salutatorian of her class, get an Associate Degree in Graphic Design, a B.S., then a Master’s in Teaching by the time she was 22! The glasses/contacts got her through a tough time. I hope you figure out what your problem is.
AnnF says
Great! I’m a classic underachiever myself, and I admire people with drive, like your daughter.
The man in the show described what he was experiencing almost the exact same way. I’ve had sinus problems for most of my life, and I just had a virus that lasted for over a month and a half and really did a number on my sinuses — even the pressure of my readers made me queazy. That’s why I was thinking recently that that must be the cause. However, some of what you said does sound like it could be right, and the one site did have as an added note that some people only experience nausea. So I will definitly look into it some more.
Who diagnoses it, though, a regular Ophthalmologist, or someone else?
Jennifer says
You would be better off taking folate rather than folic acid, which is a synthetic substance, High intakes of folic acid have been associated with cancer, they can mask a low B12. Also, regarding B12 there are a couple of paragraphs above that read: “A high intake of folic acid might mask detection of vitamin B12 deficiency and lead to a deterioration of central nervous system function in the elderly. In one study, consumption of folic acid in excess of 400 micrograms per day among older adults resulted in significantly faster rate of cognitive decline than supplement nonusers. (11) Another study found a higher prevalence of both anemia and cognitive impairment in association with high folic acid intake in older adults with a low vitamin B12 status. (12) As vitamin B12 deficiency is a common problem for many older adults, these studies suggest that high folic acid intake could cause serious cognitive consequences in the elderly.
Despite the risks associated with high levels of folic acid intake, it is well established that adequate folate intake from the consumption of folate-rich foods is essential for health. Folate aids the complete development of red blood cells, reduces levels of homocysteine in the blood, and supports nervous system function. It is well known for its role in preventing neural tube defects in newborns, so women of childbearing age must be sure to have an adequate intake prior to and during pregnancy.
Excellent sources of dietary folate include vegetables such as romaine lettuce, spinach, asparagus, turnip greens, mustard greens, parsley, collard greens, broccoli, cauliflower, beets, and lentils. (13) Not surprisingly, some of the best food sources of folate are calf’s liver and chicken liver.”
Lan says
How long does B12 from an injection stay in the body?
ND says could be around and affect blood test result after 2.5 months; MD says it can only be around 2-3 weeks.
AnnF says
I don’t know about blood tests, but I’ve heard some people say that for them, the effects only last one day.
Greg says
Hi Lan, the real answer is “it depends”. Thus, the half-life of stored B12 is over 200 days. The half-life of injected B12 is different, and it depends upon how it is administered. IV injected material seems to have a half-life of around 16 hours. Thus a 1 mg dose would be almost totally gone (less than 4 ug left) by 9 days. IM injected material lasts slightly longer, but probably not much. Topically administered material in b12oils would be longer due to the depot effect of the skin. IM injected material given 4-6 weeks apart doesn’t actually top up areas such as the brain or restock the liver, because if it did, you would only need to have 3 or 4 injections every 4-5 years, In stead the IM injected material give you this massive peak and trough effect. What is also important is that the B12 has to be around to saturate any “free” transcobalamin (holotranscobalamin), as this is the protein that is required in order to get cellular uptake. Only about 25% of protein bound B12 in serum is bound to TC.
Samantha says
Great post, thank you. I have ulcerative colitis so B12 deficiency is a big concern for me. Just wish I could find a doctor who took it as seriously.
Greg says
Sorry to hear about your UC. Make sure that you get your vitamin D levels up as high as you can. Vitamin D is supposed to be very good for UC. Apparently there are lots of vitamin D receptors on the gut wall, and they help with the maturation of the gut cells. I’d also make sure that you check out on iron deficiency as well as B12 deficiency. Apparently 85% of people with IBD conditions, including UC get iron deficiency. The reason is most likely due to poor maturation of the gut wall, plus loss of uptake of recycled transferrin as this is compromised in UC. Sorry haven’t tracked out the best method for iron supplementation, but evidence suggests that you are wasting your time unless you get injections. You will of course need vitamin B12 via a non oral route, such as injection or transdermal oils.
AnnF says
Can you take vinegar with UC? I know the unfiltered Apple Cider Vinegar — the one that is cloudy, and has a goo on the bottom called the mother — is good for heartburn/ acid reflux, and many other gastro-intestinal issues. I would also avoid wheat products, and I believe you should avoid dairy, but you can still take pills for any nutritional loss.
doe harrison says
I have pernicious anemia and have received injections monthly for years. I am told there is a shortage of the vaccine now and am unable to receive the injection. I have had balance issues and extreme tiredness for no reason recently. I now take one 1000 mcg daily. Having trouble figuring how much I really need. This concerns me. Doc says ask pharmacist, Anyone know?
AnnF says
Yeah, and when you ask your pharmacist, she’ll say to ask your doctor. I was taking 20,000 mcg for over a year — probably 2. That was 2 5,000mcg sublinguals in the morning, and 2 at night. I eventually lowered the dose to 1 sublingual a day, but pain in my legs kept coming back after a month or two, so now I’m keeping it at 2 pills once daily, and that seems to work well. there is someone on here touting an oil version, and I might give that a try. In my opinion, 1,000 is O.K. for anyone who hasn’t shown symptoms yet. As I’ve said elsewhere, there are VERY, VERY few cases where someone can’t take B12, but everyone else should take it, because it’s so important.
Also, make sure your D levels and Magnesium levels are good. I ignored Dr. Oz about magnesium, saying to myself, “It’s a trace element, I’m sure I get enough,” but he was right, and I was wrong.
Madge says
You basically can’t overdose with methyl or adenosylcobalamin, although some people react badly to cyanocobalamin (the normal supplement type in the US) or hydroxycobalamin (now a replacement). If you are one of 30% of people you have trouble converting cyanocobalamin or hydroxocobalamin to the two active forms methyl and adenosylcobalamin due to mutations in the methionine synthase reductase gene. This doesn’t normally affect people that much if they are getting dietary B12, as the forms in the diet are adenosyl and methyl B12 (cobalamin). This may be a reason why the ultra high doses are not really doing much for you. I had this problem which is why I use the mixed Ado/MeCbl from b12oils. It is an oil that you rub into your skin. Works a treat.
doe says
Thank you for reply. I started taking magnesium on ma own because of severe leg cramps. Still get them but less frequent and shorter in duration. I am learning a lot from you and others input. I agree, most drs. do not know much about b12 or pernicious anemia. Would you or others recommend a neurologist instead of internist?
I also was on folic acid many years ago but new doc says do not take. I am losing faith.
AnnF says
Doe,
It really depends on the doctor, from what other people write, neurologists don’t seem any better than any other type of doctor. I don’t know how to find one that actually believes in vitamins as therapy. I complained to mine all the time about symptoms I was having, but she was just worried about my BP and if the medicine lowered it enough, nothing, and I mean nothing more.
Anyway…did your doctor say why he didn’t want you to take folic acid? As far as I have seen, most doctors advise to take a general B supplement, and specifically, Folic Acid. My reading has advised this as well.
AnnF says
Madge,
There are one or two diseases I’ve read about where taking extra B12 can be harmful. I can’t remember what they are, because I didn’t have them, but if you do have them, you more than likely have seen a doctor and know. I think they even advise against eating liver and other things high in B12.
Madge says
Hi Ann, that is very curious. It must be extremely rare as I have never heard of it. There is one disease Leber’s disease where you shouldn’t give cyanocobalamin, but adenosyl and methyl are fine. VB12 is essential for life. If you don’t have it you basically die, so it is hard to imagine that these conditions ever survive the womb, and anyway the foetus gets B12 from the mother, to the baby so it would die before birth. Can you give us more details? Was it from a publication, or from “web” chatter?
Annmarie Flynn says
Sorry, but as I said, I didn’t have them (I think there were 2), so I didn’t pay too much attention, but I did feel a little guilty saying EVERYONE should take B12.
I believe I read about one on, is it NIH or NIMH website?, or some other med site like that. The other was an ailment that has to to with the digestive tract, especially the colon, I’m pretty sure. Or maybe the bladder, I think I was looking up Interstitial Cystitis because I had been looking at marshmallow root tea on Amazon, and a lot of people used it that had IC. So, I googled and looked and followed links, and it could be IC, or one of the dozen or more other diseases that had links — now you know why I don’t know which disease it was…and why my house never gets cleaned.
Sorry I can’t be of more help, but I definitely know I saw the warning(s) against B12.
HF says
Hi Annf,
Re B12 side effects. There are some possible side effects, but are rare. This site should help:
http://vitamins.lovetoknow.com/Vitamin_B12_Injections_Side_Effects
AnnF says
Thanks for the link. Maybe it was only Leber’s, but I could have sworn it was two, not one.
Weird thing about the site, all the side effects were the same things that B12 helps. Maybe it’s because the list is from CyanoCobalamin. It could be the Cyanide that is causing the problems, not the B12.
Lisa Bloomquist says
The exact same article could be written about magnesium. Just replace “Vitamin B12” with magnesium, and, well, same article. You could say the same about thiamine too – another B vitamin.
When are people, doctors in particular, going to start looking at what depletes cellular minerals and B vitamins? When you start looking at a bigger picture, you might actually find some culprits. The culprits are the pharmaceutical industry. One, of probably many, class of drugs that depletes magnesium, B vitammins and iron – and causes mitochondrial damage / oxidative stress – is fluoroquinolone antibiotics (cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin and floxin/ofloxacin). But doctors give them out like candy despite the 43 PAGE warning label.
Here is a great article about how fluoroquinolones are a risk factor for type-2 diabetes – http://www.medical-hypotheses.com/article/S0306-9877(14)00217-5/fulltext A similar one could be done for all of the diseases mentioned at the top of this article.
Molly Malone says
Thank you Lisa! I totally agree, and I had no idea about a warning label of any length, let alone 43pgs! I also think there has to be more to this issue (nothing is ever simple, is it?) than just the fluoroquinolones. I have never taken them, yet I have chronic fatigue with fibromyalgia, and I battle chronic migraines – I’m coming down from one right now so if I sound out of it, it’s because I am a bit, sorry. Fluoride and bromine (used to bleach flour in breads) each do a real number on the thyroid and displace iodine, the only nutritive halogen as far as I know.
Could we add to your knowledge with the hypothesis that any fluoride from any and every source is also a possible contributor? I’m thinking of toothpastes, fluoridated water, fluoride tablets (no joke, this happened to me) that pediatricians and dentists prescribe for small children ‘for their teeth’, and industrial fertilizers. I’m under the impression that those fertilizers have a lot of hidden poisons in them under the ingredient “inert ingredients” and one of those is fluorides. These may either be uptaken by the plant foods we eat or those fed to animals, or they may interfere with normal plant uptake etc. ultimately rendering the plant deficient at best, toxic at worst.
Some vaccines have or have had fluoride as an ingredient, too. [What genius dreamed that one up?!] Here’s a pdf chart, you have to click on the link:
http://www.cdc.gov/vaccines/vac-gen/additives.htm
What’s your thought on all F sources? And possibly bromides as well, since they are also in some vaccines and in our food now, too? I think these ingested and injected toxic halogen compounds can and do ruin many pathways in the body, not the least of which is this B-12 issue.
Lisa Bloomquist says
Hi Molly,
It’s funny, you’re the third person in 24 hours to ask me about the fluoride connection. I think that it may be a sign that I should look into it more thoroughly. 🙂
Dr. Mercola thinks that the fluoridation of fluoroquinolones is the main problem with them. Here is one of his articles on the topic – http://articles.mercola.com/sites/articles/archive/2013/09/25/fluoroquinolone-antibiotics.aspx
I believe that the problem with fluoroquinolones (FQs) is more in what they do to cellular magnesium levels and mitochondria. FQs deplete intracellular magnesium. Intracellular magnesium is really, really, really important. It is vital for more than 300 enzymatic reactions – including the utilization of all of the B vitamins within cells and the production of ATP in mitochondria. When cells are deficient in magnesium, the mag/calcium balance is thrown off. Too much calcium can translate into too much superoxide production. Superoxide is a potent oxidant that can wreak havoc on the whole body. FQs are a big culprit in depleting cellular magnesium, but they’re not the only one. Here is a list of drugs that deplete magnesium – http://www.jigsawhealth.com/resources/drug-muggers-suzy-cohen-magnesium
A fluorine atom was added to the quinolone molecule to make it more potent and so that it could more easily penetrate tissues (and cells?). The fluorine/fluoride may be the key to how FQs break open cells to deplete magnesium. I’m not completely sure about that though.
Thank you very much for your thoughtful comment! I definitely need to take a closer look at the role of fluoride in the mess that is Fluoroquinolone Toxicity.
Regards,
Lisa
Molly Malone says
Thank you very much Lisa, I follow Dr. M too, he’s very helpful. I didn’t realize about the magnesium connection, and I have never taken an FQ, but I’ve had 2 flu shots, and vaccines of course, and I am horribly magnesium deficient. So deficient that I have had to change my (already organic whole foods) diet to try to fix it, and I take a ton of Mg every day. And I have Chronic Fatigue, so I believe it’s all tied together somehow. Thank you for the link and your info which is new to me. Ever onward!
finndian says
Molly, you’ve listed migraines, fatigue, b12 and magnesium deficiency that you can’t seem to cure. All signs point to undiagnosed food allergy and/or under-treated hypothyroidism. You’re sure not going to cure your magnesium deficiency and all those symptoms orally until you cure the problem causing the stomach issue.
AnnF says
You know, not to sound all “conspiracy theory-ish” about it, but it seemed to me awhile ago that a lot of municipalities have been quietly stopping the addition of fluoride to the drinking water.
Also, I noticed about 15-20 years ago that the bleached flour I was buying always tasted stale. Then, on some cooking show, they mentioned that the chemicals that they used to bleach the flour left a taste that some people noticed. I tried unbleached, and no taste! I now only use “big brand, not organic or anything” flour. I thought it would change the look or texture of my baked goods, but it hasn’t. That goes to show you, let your senses be your guide. Unfortunately, a lot of people have overloaded their senses, which also reminds me — and this is partially a do as I say, not as I do thing — try not to wear perfume, cologne, or use scented stuff. I have heard from different sources that prolonged use can screw up your body.
AnnF says
Sorry, I meant to write, I now only use “big brand, not organic or anything” UNBLEACHED flour.
Sure wish there was a way to edit, yeah, ok, and wish I had proofread.
lis says
oh loved that part “for their teeth” with quotes, lol thank u.
Becky says
Hi,
I’m looking for any scientific papers that relate to this paragraph:
“In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.”
I have a result of 330pg/mL and I have many symptoms but the NHS won’t treat. I’m hoping to go to my doctor armed with evidence in favour of treating me.
Thanks
Becky
Greg says
Hi Becky, there are a couple of points of relevance here. Firstly, what is regarded as normal in any country is actually determined by the pathology labs. It has nothing to do with clinical deficiency. Basically the path labs average out their data and then define normal as what falls within 90% of the values that they assess, with low being the lowest 5%. Thus, normal B12 is different in every country and is totally dependent upon diet. I have no idea who came up with this concept as it is absolutely ludicrous. Second, levels in the USA are relatively high because of B12 and folate supplementation of many foods. In Japan they eat lot of sea-food which tends to boost the levels. Many studies have shown that sub-clinical deficiency (as defined by elevated MMA and Hcy) starts at 250 nmol/L or 340 ng/ml. There are, however, a lot of problems even with this assessment. The most accessible way to tell if you are deficient is via MMA, Hcy levels combined with B12 and most importantly symptoms.
Andre says
http://www.cyanotech.com/pdfs/spirulina/spbul52.PDF
Spirulina Pacifica is a source of Cobalamin.
Thanks
Greg Bryson says
That paper indicates that 36% “of the total corrinoid vitamin B-12 activity in Spirulina is human active.” However, if some cobamides inhibit b12 activity, I have to wonder about the remaining 64% in that form of Spirulina. Further, it is not clear that the percentage comes from any of the papers cited at the bottom of that article, so I don’t see how to verify their claim.
Christine Thole says
Please help! I have horrific optic nerve pain and the only reason found could be low b12 ( 150). The doctors say “that is a little low”, but in reading the thread it seems it is really low. 6 months of b12 injections and nerve pain subsided, just had it checked and I am in the 400 range and all of a sudden I have horrific optic nerve pain again??? I have no appetite yet have put on 20 pounds! I have read that low b12 causes both weight gain and loss. I seem to find conflicting arguments on anything I read.
Greg says
Hi Christine, interesting problem that you have. Be aware that the serum B12 that you measure (400) will be the same type of B12 that was injected, it may not represent active B12. Thus, if you were injected with cyanocobalamin, that is what is most likely in your serum. Cyanocobalamin is a sort of pro-vitamin form of vitamin B12, and must be converted to methyl and adenosyl cobalamin within the cell. The next thing is that when they measure serum B12 it can be on one of two different proteins (i) transcobalamin (the active transporter to take the B12 into the cell and (ii) haptocorrin (this is not active for cellular transport). Hence, just because your B12 level is now 400, if your symptoms have returned it suggests that first, the analogue measured in serum is the inactive one, and second, the B12 that is there is not bound to transcobalamin.
As for weight gain and weight loss. You need both methyl and adenosyl cobalamin (B12) to properly process your energy derived from fat, and proteins, without it you may feel hungry and so put on weight but feel like you have no energy. You also need vitamin B1 to properly process sugar, so if you are low in this you won’t get energy even from sugar. As an adjunct to this you need riboflavin (vitamin B2). If you are hypothyroidic all of this can be a problem.
The most important thing is to treat the symptoms as the diagnosis can be ambiguous.
AnnF says
Christine T.,
What do you mean by optic nerve pain? Could you describe the way it feels, and where it is located?
Have you ruled out diabetes or problems with your endocrine glands such as thyroid and adrenal?
Make sure you take Magnesium, Zinc, get enough iodine, and take a B complex vitamin as well as B 12. Also, get your D tested.
Judy says
This message is for Jerry Boucher
I’ve been suffering from B12 deficiency for 9 yrs.
My level was 41, by the time drs. found the problem, nerve damage had happened. I use Nascobal and my levels have been anywhere from 700’s to 800’s except when I had breast cancer it was 200. Right now I’m using the red oil along with my nascobal. I’ve been using the oil for about 4 weeks now and
haven’t noticed any difference. I wonder if the oil is even going to help my nerves.
Madge says
Hi Judy, Have you been checked for other vitamin deficiencies? Once you are critically deficient in B12 and/or folate your gastro-intestinal tract can become very compromised and you may find that you can’t absorb the majority of your B group vitamins. You need them all if you are going to recover. Also you need to have your vitamin D levels very high for neuronal recovery. All this in combination with both Ado and Methyl B12. If your B12 levels were SOOOO low, you undoubtably would have gut damage and poor absorbtion.
Madge says
HI Judy,
Me again. I was thinking about this a bit, and then it swigged to me that you are using cyanocobalmin in the Nascobal (I am pretty sure that that is right). I would stop using this. If you are one of the people that can’t convert cyanocobalamin to the active forms (Adenosyl and methyl) the cyanocobalamin may block up the machinery inside the cell that processes the other active forms and stop them from working, The other thing is that the Nascobal B12 will get first look at transcobalamin , which is the protein responsible for uptake into the cell, and may further interfere with uptake of the adenosyl and methyl B12.
Michael says
@Molly Malone: thanks so much for your reply, I’ll read through the articles you posted.
Michael
Joe says
Actually, you can find B12 from vegan sources (algae’s and sea vegetables) and multiple studies prove that they are linked to higher levels of B12, so it’s clearly being absorbed to some extent.
http://www.ncbi.nlm.nih.gov/pubmed/20108213 – “Compared to the control period, in the intervention period participants improved their vitamin B12 status, significantly reducing Hcy blood concentration (p=0.003). In conclusion, the Klamath algae product AFA-B12 appears to be, in a preliminary study, an adequate and reliable source of vitamin B12 in humans.”
http://www.ncbi.nlm.nih.gov/pubmed/7562085 – “The vegans consuming Nori and/or Chlorella seaweeds (n = 16) had serum vitamin B-12 concentrations twice as high as those not using these seaweeds (n = 5) (mean 221 pmol/L, range 75-408, vs. 105, 35-252, P = 0.025). In the longitudinal study, six of nine vegans showed slow, but consistent deterioration of vitamin B-12 status over a 2-y observation period. On the basis of these results we conclude that some seaweeds consumed in large amounts can supply adequate amounts of bioavailable vitamin B-12.”
http://www.ncbi.nlm.nih.gov/pubmed/20013055 – “Chlorella supplement may be useful as a resource of natural folate, vitamin B-12 and iron for pregnant women.”
In my opinion, the algae’s are a necessity on a vegan diet. It’s not that vegan diets are unhealthy, it’s that most people aren’t properly educated on how to follow a well-planned vegan diet so they don’t run into serious nutritional deficiencies over the long-term. Chlorella provides large amounts of iron, zinc, chlorophyll, nucleic acids, and high-quality bioavailable amino acids.
Michael Fu says
Hi:
This is very interesting article. My mom is taking this supplement “Calomide S.C. Tablets 250 µg”, I searched the net and it said contains Cobamamide, in your article you mentioned Cobamide, which is not a true B12 but analog, are they the same thing? The box said B12 supplement.
Thanks for your help.
Michael
Molly Malone says
Cobamide ≠ Cobamamide. I think cobamide refers to the general class of all of the B12 analogs: http://www.reference.md/files/D003/mD003038.html
Whereas cobamamide refers to adenosylcobalamin only. That seems to be the ingredient in Calomide:
http://en.wikipedia.org/wiki/Cobamamide
http://www.rightdiagnosis.com/medical/cobamide.htm
http://www.drugs.com/international/cobamamide.html
Here’s the best of all, though, this page gives synonyms and cobamamide is a synonym for adenosylcobalamin:
http://www.ecmdb.ca/compounds/ECMDB02086
Looking at the structure on both the wikipedia page and this next page, it looks like adenosylcobalamin to me:
http://pubchem.ncbi.nlm.nih.gov/summary/summary.cgi?sid=7847110
for comparison, just type adenosylcobalamin into a google search and then click on images.
It seems that it is actually a very good form of B12, as it is adenosylcobalamin. Whether it is well absorbed in the form it is in is another matter. Sublingual tablets are designed to dissolve under the tongue and absorb across the mouth’s membranes; some of them work fairly well according to those who use them. Pills that are swallowed don’t work so well as the B12 is destroyed during digestion and never makes it to the small intestine where it can be absorbed. Injections of methylcobalamin or hydroxocobalamin work well because the digestive tract is bypassed.
Your mom’s Calomide seems like a low dose after reading this article, being 250 micrograms, but if it works, then it works.
Jennifer says
Regarding B12 pills not being absorbed from the stomach. I have a friend who is a district health nurse, and her department gets all the people newly diagnosed with B12 depletion. They start by giving methylcobalamin shots weekly, and then the person switches to oral. They also have all the latest research on B12, and supposedly if you give very large amounts by mouth then it will be absorbed. She said that large amounts by mouth are better absorbed than the sub-lingual type..but I have to confess that i am sticking to sub-lingual.
Marlene Penticost Harrietha says
Dear Chris: I am desperate for your expertise on B12 deficiency. I am 59 years old and at the age of 35 my Dr. Told me I was very low on b12, I wasn’t told I was b12 deficient, I changed Dr’s and did not take my medical records. The doctor I have now had tested my levels, they were 222, this was about 7 years ago. She told me my levels were fine and I have been experiencing many symptoms for all these years. The symptoms I have been experiencing are, insomnia, lack of appetite, weight loss, fatigue, depression, memory loss, panic attacks, I have colitis, vitiligo and the last visit with my Dr. She said that my levels should be at least 300, and to take the b12 pills. I took them for about 3 years with no success, she doesn’t believe in giving the shots. I have very little energy and I am so sick of feeling this way for all of these years. I spoke to many of pharmacist that told me that usually shots are given to bring up your levels then the pills will work. I would greatly appreciate any help you can give me, I am so sick of feeling terrible! I’m afraid that I have a lot of damage because of the length of time this has been going on. Please, please reply, it would me the world to me. Thank you, any info would help, I am feeling so defeated, and you cannot get another doctor in my area. Thanks again
Molly Malone says
Oh my word you poor thing! Many people here know a lot more about this than I do, so hopefully they will chime in, but just to give you more info, here is what I think:
1 – Read Chris’ articles, here’s another: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency
2 – Here’s Freddd’s protocol, lots of good info: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/
3 – Check out the book Chris recommends on Amazon: “Could it Be B12?” by Sally M. Pacholok and Jeffrey J. Stuart. There isn’t a particular protocol in this, but there is a good check list on P. 189-193 to self-diagnose and the book is full of info. even if you don’t have a decent doctor at the moment.
4 – Then write up a protocol that seems good to you, for your own body and situation using Freddd’s guidelines. He gives wonderful info that is not anywhere else, just at least read that one page I linked in #2 above.
You can get spray on oils for B12 deficiency and use them instead of the sublingual tablets. You spray on your skin and rub in. Here’s the product page: http://www.b12oils.com/Products.htm
You can also get spray sublingual methylcobalamin at a dose of 500mcg per single spray. This is what I’m using but I need a lot, and more cofactors that I am learning about from both Chris and Freddd (Thank you both!). I get mine from http://www.vitacost.com/ Just type B12 into the search bar and then look for Pure Advantage brand. Yes I can actually feel a positive difference when I use it, but it is slight. (Perhaps I am not using enough? Perhaps I need more cofactors that I am unaware of?)
I do believe that injections are the best way to go in the beginning, but I went to an ND who still didn’t believe my symptoms, written down and told to her, with me standing in front of her, because the MCV was in range. She is blind in one eye, can’t see out of the other! I got precisely one injection and felt like a new person for 1.5 days, then no more. Bummer. The spray I use is nowhere near as good as that was, so the search continues…
Try to find another doctor, preferably an orthomolecular MD/DO or a holistic MD/DO or a naturopath (ND) that actually believes there is such a thing as B12 deficiency. Use google to search. You may be able to find someone to help you that will do it online or long distance. It may be worth it to travel once just to get started, and then continue on your own.
Best Wishes!
Greg says
Hi Marlene, Your description certainly sounds as if you B12 deficiency, particularly when you combine your B12 levels with your symptoms. You will see many protocols on the web-site for getting better. One thing that you need to do before you decide which one is best for you, you need to work out why your are deficient. as this may help you choose the correct protocol. Thus, do you think it is your diet (vegan or vegetarian), genetic problems (methylation associated mutations),, metformin use, hypothyroidism, atrophic gastritis, etc, etc., or is it the colitis? Colitis can be the cause or the effect. If you have colitis, you will also have other B group deficiencies, and possibly vitamin D deficiency, and in addition most oral, sublingual, nasal spray treatments will be almost ineffective.
AnnF says
Hi Marlene,
Here are all the supplements that I take. I still have my period, and I definitely notice a cycle as to how good or bad I feel, so keep in mind, as a woman, it doesn’t matter if you are post or pre menopausal, you are going to have a certain number of good days and a certain number of bad days each month.
Anyway, I take
Natural Factors Sublingual Methylcobalamin 2 5000mcg daily
Phillips Magnesium Caplets. 2-3 daily
Feosol Bifera 1 caplet daily-ish
Vitafusion PowerC 2 Gummies Daily
Phillips Colon Health. Probiotic caps. 1 Daily
Sundown Naturals inulin Fiber Prebiotic. 4 capsules daily
Vitafusion. Platinum 50+. 2 Gummies Daily
Nature Made Super B Complex. 1 caplet Daily
Vitafusion Vitamin D. 2 gummies Daily
I avoid artificial sweeteners as best I can. I would avoid them altogether, but they put them in so many products now, even Wrigley’s gum, that I can’t eliminate them completely.
I drink unfiltered apple cider vinegar diluted in water, or take the apple cider pills about once a week. More often makes me feel better, but, you know how it is.
I haven’t tried it yet, but I probably will, try Royal Jelly. If you are severely allergic to bees, you can’t use it, and you have to only start with like 1/8 of a teaspoon a day, but it is supposed to be good for what ails ya.
I don’t exercise at all (I know, I know). I took a Tai Chi class a few years back, and it did give me a feeling of well being. Something like that, or yoga might help you.
So, try taking the things I listed for a month or two, and see how you feel. Though, I you may want to take 2 B12’s in the morning, and 2 at night. Also, wait a little while if you are going to try the Royal Jelly, or even the Vinegar. See how you feel with the vitamins first.
If you don’t notice an improvement after 2 months, have yourself checked for allergies, viruses and the like, and parasites.
I also drink only water most of the time. Soda gums up the works,and I can feel alcohol in my system for days. I do take aspirin almost daily, but I only use enteric (coated), and never take it on an empty stomach. I also try not to take acetaminophen — I find the fact that they keep lowering the dosage and telling us what not to have with it troubling (after it being sold for over 60 years, they’re just finding out about it now?)
Just one more thing, coffee was giving me heartburn, so I now take roughly 2-3 Jet-Alert tablets a day until I can kick the caffeine ( yeah, right). They don’t have the same kick as coffee, but one pill gives me quite a bit of stamina for 3-4 hours. That might help you a bit, and for nausea, get some Clove gum, Amazon sells it.
In the summer I take Zyrtec, sudafed, and sometimes for dizziness, prescription Meclizine, which is GREAT, I can even read a map while my husbands driving, and I don’t feel like I need to throw up.
I know where you’re coming from, so I hope my drug list helps.
laurie roberts says
If you haven’t had genetic testing and don’t know if you are COMT V158 positive, then according to Amy Yasko (expert on nutrigenics) I don’t see how you can know what kind of B12 you need. Double COMT like I am is very sensitive to B12 of any kind and I can only use Hydroxy and or Adenosyl B12. On top of that, if your lithium is low, any b12 you take may not be available since lithium is thought to transport it. She says find out your lithium levels through hair metal analysis to determine if you need to get that balanced before moving onto B12 support. Google her protocol for autoimmune, autism , chronic disease……it is based on your genetics…….otherwise you are shooting in the dark on this stuff !!!
Madge says
I am not sure that I agree with this. One of the reasons that people think that they do better on the OH/Ado b12 mix is because basically the OHB12 is not really working and for good reason. They can’t reduce the OHB12 to turn it into MeCbl. Even the science doesn’t support the idea that you won’t do well on MeCbl. It now looks like many of these people need riboflavin (as FAD or FMN) as it is used in the enzymes that are involved in breaking down adrenalin and histamine using SAM. If they are hypothyroidic or have low riboflavin then they appear to be bad responders to methyl, as they can’t make FAD, and so can’t inactivate DOPA, histamine or adrenalin once it is stimulated. The whole hypermethylation story is unproven scientifically and has not even a rational reason to be right.
Ronne says
You all need to go on the internet and look up Methylation Cycle/Methy B12/Methylfolate. You will get tons of information about brain chemistry cycles that involve B12 and folic acid. You may want to get a genetic test done (you can self order thru the ” 23&me” website for $100). You will get a report of genetic deficiencies, but you may not know how to interpret it, so It would be best if you could work with a Dr (MD and or homeopathic) that is aware of “MTHFR” (the genetic defects that cause B12 & Methylation deficiencies). Having said that, most main stream Dr do not even know about this and cannot (will not??) help you. I have seen a neurologist, an ENT, a cardiologists and a family practitioner – non of which had a clue how to help me. Note: If you are not biology or chemistry minded it may seem overwhelming at first, but there are many articles written by laymen that are easier to understand. My main Symptoms: Light headed every day for 2 years, feet burn at night, brain fog. balance issues. Hope you all find answers to your problems.
laurie roberts says
Genetic Genie on the net can decipher your 23& me test and puts it in a understandable format . I think they ask for a small donation for the service but ($15 ?) but it was well worth it.
Pat says
I found Sally Pacholok’s book Could It Be B-12? an invaluable guide to the whole B-12 problem. And someone is making a movie about her struggle to educate doctors at her hospital.
http://www.imdb.com/title/tt3520022/?ref_=nv_sr_1
Due out later this year I think.
Madge says
Hi Pat,
Yes it is a pretty good book, but probably her web-site has quite a bit of additional information. She doesn’t appear to have linked the deficiency to variants in methylation related enzymes (MTHFR, MTRR, etc) nor to the prevalence in CFS. Good on her for trying to make the population aware of the problem. Now if you can just get the doctors to be aware many of us will be better off!
AnnF says
Her book is o.k. to show to your doctor if he is not a believer in the harm low B12 can cause, but frankly, she’s preaching to the choir. I really don’t like the fact that she tells people to wait to take B12 until they get a diagnosis from their doctor, when her main complaints are that doctors won’t listen, and that the tests aren’t definitive.
If I hadn’t started taking B12 on my own 3 years ago, I don’t know where I’d be — probably in a wheelchair waiting for another test to come back. Seriously.
sgujar says
Hi,chris i had vitamin b12 low when i had my total blood count 6 weeks back and it was 186 only as the normal range is between 198 and 500 .I started having symptoms like buzzing in my ears or brain,memory problems,thinking problems,shortage of breath,lack of energy.Doctor suggested me jamieson sublinguil 1000 which didnt really helped me of which i use to take 2 daily almost 6 weeks still have neuorological problems,now i have switched to ola loa b12 with hydroxycobalamin and folic acid also magnesium bisglycinate plus ,i am not sure if its really gonna help me its affecting my social life including my exams,plz suggest me something as my main problem is neurological.
ed_pillar says
“This is especially important for vegetarian or vegan children or pregnant women, whose need for B12 is even greater than adults.”
You do realize that pregnant women are adults, right? It would probably be prudent to re-word this sentence.
Ed says
There are plenty of sources of B12 for Veggie and Vegan eaters. I hope you did not deter anyone from their own choices by stating false information as fact.
It’s also stated that vegans and vegetarians live an average of 10 years longer than meat eaters. Doesn’t seem like a B12 deficiency to me.
AnnF says
Ed,
What are the vegetarian sources for B12, because I’ve never heard of any. Also, what studies show that vegans and vegetarians live longer (and hopefully without more problems) than meat eaters?
This isn’t meant to sound confrontational, just wondering.
Madge says
Ed, I don’t know that anyone would agree with you on this. Even meat eaters can have trouble getting enough B12. For instance you would need to eat 4 lbs of chicken to get your daily allowance and up to 10 eggs. As for non-meat sources, the only one of any note is mushrooms, where you would need to eat a whole room of mushrooms to get your daily allowance. Other “supposed sources” have generally been found to be due to bacterial contamination, or shrimps (in the case of seaweed). Having had to deal with someone who had B12 deficient dementia I am very careful about dietary B12 intake.
Chris says
I’m a vegetarian and also use a proton pump inhibiter, so that may likely be the cause. I saw the Dr. today and he was pretty surprised it was so low so he ordered another test to make sure. We’ll wee how that comes back. He mentioned that there is a nation wide shortage on B12 injections and said that the nasal spray may be the way to go depending on how the re-test comes back. Anyway have any experience with that?
Madge says
Hi Chris, a double whammy. PPI’s are known to cause B12 deficiency, put that in with a vegetarian diet and you would have to have a miracle not to be deficient!!
I wouldn’t bother with the nasal spray, they are an experiment and a way to get around a couple of patents, all they do is slowly dribble the dose down the back of your neck slowly into the stomach.
Chris says
Thanks for the information. I guess I’ll try to call around and see if I can find any place to get the injections and if so try to convince my Dr to prescribe them. Is it possible to get injections online from a reputable place if you have a doctors prescription. I’m in a fairly big city, but in case I can’t find any.
Chris says
Well, I ended up going to get the B12 test on my own and figured that if it came back on the borderline I might opt for getting the MMA on my own as well. The B12 blood test came back at <31, so it doesn't seem to be necessary to do the MMA. Seems pretty low. I'm going to see my Dr. to get his take.
Madge says
Well Chris, looks like you now know what is wrong. Your levels should be above 300, so you have a long way to go to get back to that. Now you just have to work out why it so low, and then how you are going to get your levels up and stay up. This will depend a lot on why you are low.
Jacquie says
I have b12 deff, fibromyalgia and like another person on here I cannot raise my left arm above my head anymore and now have pain in my left foot as though it’s broken, but doc says it is poss plantar facilitus. I am about to have a active b12 test.
AnnF says
Jacquie,
If you already know you have B12 deficiency, why are you going for a B12 test? No matter what the test says, I would recommend taking two 5,000 mcg sublingual b12 tablets (1 in the morning and 1 at night) each day and see how you feel after a month. Also, see if you are low in D, and take that if you are, but wait for the test on that one because too much D can cause you harm. I was REALLY low, and the doctor prescribed a super-duper D3, but it upset my stomach so much that I had to stop. I tried lower dose over the counter pills, but they upset my stomach also. I then tried Vitafusion gummies, and found that I can tolerate those. Look for low Zinc and Magnesium as well.
I have been taking Amlodapine and Hydrochlorathiazide for blood pressure, and have had a lot of problems since I began that didn’t go away after taking my vitamins. I decided to lose weight, exercise, and step down from the pills, and am now taking one half dose every other day, and have noticed that I feel a lot better. I haven’t lost the weight or exercised, so my BP will more than likely go up when I’m done with the pills. If you take medicine, it could be that, but don’t be like me. Make lifestyle changes (I know It’s hard when you really, really don’t feel well), and plan with your doctor so you can get off any meds you can.
I have been taking Unprocessed Apple Cider Vinegar in water with honey every night, and when I can’t, I take an Apple Cider Vinegar Pill, and it seems to help.
Some people have tried Royal Jelly (bees make it) for fibromyalgia, and they say it works, but I’ve never tried it for anything, so I don’t know how good it is.
Good Luck!
Chris says
I’m going to go to a local lab to get a B12 blood test and a urinary MMA test myself and bypass the Doc for now and then decide how to proceed. After looking at all the posts in this blog, I’m confused on what to use as a value for the MMA test to determine if I should pursue B12 shots. Do you just follow the guidance on the report or is there some other level I should use?
Also, I take a daily multivitamin and separate D vitamin and a B-complex vitamin (just the recommended one a day dosage). Is it recommended to not take these prior to the tests?
AnnF says
Chris,
It’s good that you are taking the B-complex, but they can mask B12 deficiency, especially if they contain Folic Acid. I would stop taking them AT LEAST a month before the test.
Are you in the U.S.? You can go to a lab without a doctor sending you? Also, I have asked for an MMA test, and other B12 tests from three doctors, and they don’t know what they are.
Keith jones says
Hi Chris
I have been Diagnosed has a
Having a stroke, vascular diamentia and the onset of Alzheimer,s . My B12 has been low for many years and last checked was 240 My sister has been diagnosed with pernicoi
Madge says
Hi Chris, you need to really address the deficiency. Many studies have shown that you would need high dose repeated injection or the B12 oils to start to repair the damage to your neurons. Nerve velocity measurements suggest that it will take at least one year, but if you are really, really bad it will possibly take longer. Sounds like you may have some genetic predisposition to B12 deficiency. Do you know if you have mutations in your methylation associated enzymes?
Tanisha says
Hi Everybody,
I am from India, Female 41 , 65 Kg Weight , 5′ 5” got recently tested vitamin B12 with 156 pg/ml (Picograms per milileter) ?
How much medication of Methycobalamine Injection or HydroxyIcobalamine Injection I should take per day till how many days for replenishment?? What happen if i took excess medication??
You can advice me any other options if necessary…
Looking forward for your reply.
Tanisha
India
AnnF says
Hi Tanisha,
In December 2011, I diagnosed myself with low B12 after reading an online article, “Antacids Ruined My Life”. For the longest time, I had severe fatigue, but by 2011, my hair was falling out; I had extreme memory loss and brain fog; my sight was weird, I could see, but yet couldn’t see was how I described it; my periods were so painful, that I would double over and wouldn’t be able to a stand straight for 5-10 minutes; I was always dizzy, and had a severe attack of Vertigo the year before; my feet hurt as though I had Plantar Faciitis, the pain then went up to the back of my leg to my knee — I was in pain at night in bed, and during the day, I could barely walk; and everything in my life started to overwhelm me, even putting up the Christmas tree was too much for me.
After the article, I started off with the sublingual cyanocobalamin — 4 pills of 5,000mcg each. I took 2 in the morning and 2 at night. Before 2 weeks was up, my feet and legs were much better, and by the time 1 month had passed, most of my symptoms were either gone, or much, much better. I then switched to the methylcobalamin at the same dose. There is supposed to be no limit to the amount of B12 one can take, but it’s also processed by the liver and goes through the kidneys, and the dose I was taking was high, so for my own peace of mind, I tried lowering the dose, but each time, the pain in my feet came back instantly. By about December 2013 (2 years), I was finally able to lower it to the one 5,000mcg pill. I tried to lower it to 1,000mcg, but the foot pain returned after 2 weeks.
I still have a few slight problems, and the fatigue, though better, never did go away, but I am taking Blood Pressure and Water Pills which have quite a few side effects (like fatigue), so I am trying to slowly go off of them, too.
I hear the B12 injections are better than the pills, but my doctor won’t give them to me. If you watch “Living With the Fog” on YouTube, they say that every person is different.
I’m Female, 51, 65 Kg (if the calculation on Google is right), and am 5’3″.
Good Luck, and Be Well.
Ann
U.S.A.
Madge says
Hi Ann, it sounds like you are experiencing the problems with oral tablets and B12. The amount that you absorb is only a tiny fraction of the dose that you take. This means that whilst it can help with some of your symptoms it won’t really make you better. You probably would be better with the product from b12oils.com which is a topical oil which gets a much higher dose in. I have found it marvellous. Good luck.
AnnF says
Madge,
Many of my extra problems are definitely being caused by my BP meds, but I will try the oils, and see if they do better than my sublinguals. Thanks.
Vin says
Ann – I had similar symptoms.
For your eyes, I think you should try vitamin B2. That gave me amazing results. My dry eyes and eye fatigue has improved significantly. I tried Natures Plus B2 or Solgar, about 50 to 100 mg initially and can lower the dose later.
AnnF says
Thanks for the advise Vin, but my eyes were better after I started the B12. I also take a B complex, and vitamin D gave an extra boost.
I am over 50, so I need the drugstore readers for reading, but only 1x.
AnnF says
Vin,
I think I will look into the B2. My eyes aren’t as dry as they used to be, especially since I stopped taking my BP meds, and I don’t need my allergy medicine this year. The dry eye flare ups still bother me, and I came across your post again, so I will try the B2 out. Thanks.
Kim says
AnnF, you described everything I have been dealing with lately including the plantar faciitis, and ever since I was diagnosed with Fibromyalgia in 2010. The doc had put me on Cymbalta which gave me intestinal issues so I got off it and Ive been struggling for 5 years now trying to self treat myself with organic foods, mineral supplements and vitamins. None of the doctors ever thought of B12. One mentioned I had Low D3 but never stressed the importance of it. But NOW after having my blood work faxed to me this time around from being sick and tired, of being sick and tired and in constant pain and overweight, I started googling each result. My MCH was high indicating B12 deficiency and megloblastic anemia? And my D was showing as <4.2 how does one just shrug their shoulders to these results knowing I have these symptoms of fibro, fatigue, unable to lose weight no matter what I did, and then digestive issues that went from 5 years of constipation to suddenly diarrhea! I recently ordered a multivitamin patch since I realized I cant digest anything correctly at the moment, which includes 5000iu D3 and 1000mcg B12 AND a straight patch of B12 5000 mcg only. Directions say the patch is supposed to be used once per week but Ive been wearing one per day since I got them. Seems to be helping but I need more to recoup faster so maybe 4 patches a day (20k mcg) on me would help for a couple months? What say you? (Although they are not cheap they are convenient and I might be able to talk them into a bulk discount)
AnnF says
If you can’t get the B12 shots, I think you should try the oils that a few people wrote about on here. I keep saying I am going to try them, but I haven’t yet, just because I’m a little confused about which one to use.
As for D3, spend time in the sun, drink milk if you can, and try the GummyVites D3. I wrote before (I wish we could sort the posts by name at least), that my doctor was concerned about my D levels, and prescribed, I don’t know, 15,000 units or more of D3, but the pills made me sick, so I tried a few OTC brands until I found the GummyVites. I have been able to tolerate all the vitamins I take, except for the B complex, and that is not so bad if I take it with milk, and especially with food. Make sure you take probiotics.
I did have the opposite issues in one department. I had diarrhea all the time until I started the B12, and now I am constipated. The Magnesium really helped, but now I can only take one a day, and I know I really have to exercise.
I think that most of the doctors people go to are competent, it’s just that they have been trained in a certain way. It doesn’t help when stupid reports come out that state that vitamins don’t help at all. How can they quantify something like that?
Anyway, look at the list of vitamins I put on here in a few places. If you can’t find them, I’ll write them down again. Try for the shots. You never know. Don’t avoid oils and fats — use the whole egg, drink whole milk, use mainly olive oil — imported if you can afford it, I like grapeseed oil as well, try to buy as much organic/non GMO produce as your budget will allow, use raw honey daily, and drink diluted unfiltered apple cider vinegar daily. Get off the coffee if you drink it!
It takes a long while, but one day you’ll notice that you are starting to feel better, and that really gives you a boost. Good Luck!
Danielle says
I have been trying to sort out my symptoms and have suspected everything from metal poisoning to Lyme and co-infections to Candida and leaky gut. It started after a tick bite, birth of my first child, and amalgam fillings (8 years ago). I had extreme stiffness in my ankles upon waking in the morning. Also, pain in my spine upon jarring. Lyme and lead tests were normal but SED rate was 35.
Over the years, I developed sharp pains in my neck (thyroid), heart palpitations, chest pain, nose burning when coughing, and more. Last year, after the birth of my 3rd child, IV antibiotics during labor (another tick bite during pregnancy), and metal ortho. braces two months post partum, I suddenly noticed that I was having problems with balance. Subtle, but noticeable. Also, for about two weeks after getting the braces, I had extreme fatigue upon waking and my feet were sore at night and upon first steps in the morning. I didn’t pay much attention, because it subsided. But, then general fatigue and other symptoms began to surface. Shortness of breath, sharp ice-pick head pains, temple tension, facial fat loss, intestinal and eye muscle twitching, then all over muscle twitching. Then I began to panic and woke up with one leg burning and creepy crawly sensations. Cold sensations, tingling, sound sensitivity, smell sensitivity, hyper-nerves and more. It would take pages to describe it in detail. When I had the braces removed, I had instant relief, but have been struggling with finding an optimal balance with diet, supplements and detox. My SED rate has remained around 28-35. My B12 was low normal. 312, I think. My Vitamin D was 28. I have had a few amalgam fillings removed and the supplements and the toxins caused tremors, increases sound sensitivity and brain snapping sensations. A month of Doxy and no supplements solved the brain snapping and sound sensitivity, but the muscle twitching persisted. It has been the most persistant and hard to deal with symptom. Heart palpitations and chest pains and upper torso pains, are the others. Magnesium and B12 has recently almost stopped the twitching, but weakness and sore muscles have started. Also, I have noticed a strange reaction to alcohol for years. I get weak all over my body within seconds of sipping wine. Any insight about what tests to order, or supplements to try would be greatly appreciated. Can I expect to get well?
Danielle says
I should also mention that the supplements I have been taking include MethylCobalamin B12, Vitamin D 1000, Glutathione cream, Pectasol C, Fish Oil, CoQ10, Magnesium w/wo calcium, Pau D’Arco. Grapefruit Seed Oil for a short time.
I have only taken most supplements for a week or so at a time, with a week or so off. Busy life, makes it hard to be regular with anything, and also the flair up of symptoms can usually be attributed to something I am taking, but on so many things, that I have a hard time knowing what.
Yesterday, I took the b12 twice and today my left arm and hand feels like the blood supply has been cut off and I have a cold sensation in it. I noticed threads about potassium, so yesterday and today I ate a banana. Hasn’t helped, yet.
AnnF says
Hi Danielle,
First, what is Doxy and SED?
Tests — Lupus, there are other tick diseases besides Lyme, MS, check all your endochrine glands, your Lymph system, Hodgkin’s and non-Hodgkin’s lymphoma, diabetes, liver, kidney, HEART, lungs, particularly asthma, brain, and D3. Long list, I know.
If you look back, you might remember signs of B12 deficiency, but never realized. For me, you know the end scene from Queen of the Damned, where the vampires are walking in slow motion, while everyone else is speeding? That was me as child, and still is as an adult. I can relate to the tick bite and childbirth (though tick bite just kind of made me more aware. Seriously, I do think what you have is B12 deficiency. So many things — EYE TWITCHING — sound exactly like what I was going through.
B12 deficiency really sneeks up on you. I remember whem I was 19, feeling slower than I had been, then at 30, complaining to others that I felt so tired, and that everything just seemed so hard, and them saying that everyone felt like that, and me saying to myself, “I don’t think so..”. At 32, even though I was eating the same or less, and exercising more, I gained so much weight in one month, that none of my clothes would fit. Slowly, until, like you, everything started breaking down. I laughed when you mentioned the alcohol, because the same thing always had happened to me.
My advice to you, stick with the vitamins I listed a few times now. Do not take fish oil. Take cod liver oil. Lately I have been taking Carleson Norwegian Cod Liver Oil. I take a teaspoon a day, and it doesn’t taste fishy at all. Stop taking the more “different” supplements. I have found they are not worth it, and the grapefruit seed, I love grapefruit, and eat it a few times a year, but really, it effects too many things, so I am very wary of it.
I think you know this, you already said it yourself, you have to stick with it. A banana a day is a very good idea, but a banana EVERY day. I’m a housewife, so I can make sure I take my supplements every day. I still can’t sleep too well at night, but I can take a long nap during the day. It makes me anxious because all the housework piles up, then I spend my well time playing catch-up, but at least I am lucky because I can be flexible, and let work pile up. I know most people can’t let things slide,or work around illness, but you really have to try to do what you have to in order to feel better.
Good luck, and write back in a few months to let us know how you are doing.
Amy says
I got b12 shots monthly for 3 years because pills didn’t help. Then I was diagnosed with Celiac disease and eliminated Gluten. I now absorb the 1000 milligram b12 pills. I am not as anemic as I was either. I had no classic symptoms of Celiac. Luckily my hematologist had me get a colonoscopy/endoscopy. I do miss the shots though. I felt great for a few days after.
It took a long time to get diagnosed with both Hashimoto’s and Celiacs. A lot of doctors told me I was depressed–made me feel great–until I started with the numb feet and hands. Be persistent! Ask for tests! The blood test for Celiac disease said I didn’t have it, but the biopsy confirmed it. Because of lack of symptoms I would never have had a correct diagnosis.
Jenn says
this article would not have helped me one bit.. I admit I am tired and maybe missed it..but what about the genetic mutation where the body does not convert B12..which I have. I was taking tons of methyl b12..like 50,000 iu a day ( no you cant overdose on it I work with a savvy nutritionist along with a stellar functional MD team ) , my blood test showed high levels..( my NASA dr says the typical blood test is useless and pulls a different test ) ..now I am on methyl folate.
Madge says
Hi Jenn,
Which genetic mutation do you have. Do you know as it makes a difference as to which bit of the intracellular processing is incorrect? If you are still tired and yet are taking 5MTHF and methylB12, you probably should also take Adenosyl B12. It helps processing of fats and odd chain amino acids for energy. Lack of AdenosylB12 also leads to mitochondrial disease. Have you had your vitamin D levels checked? Low vitamin D is also associated with poor mitochondrial function. This would also lead to being tired, lacking energy, etc. Now if you were hypothyroidic on top of that you would be very low in energy.
Brenda says
I have been getting a B12 shot since April 1996 every month. I had to move recently due to my company closing and offering relocation. I don’t understand as to why each time I move the new doctor I find wants to take me off the B12 shot when my original doctor stated I would need it the rest of my life. So the new doctor had me do lab work from the last time I had my shot which was 1 month and 1 week from my last shot I was only a week overdue as I go the same time each month first tuesday of every month and my levels showed that I was in the normal range so he’ll want to discuss stopping my shots.
Patty says
There are lots of people that are probably B12 defient. I was diagnosed in my late 30’s and have nerve damage in my feet and lower calfs. My nerologist diagnosed me. He only found part of the puzzle. I was recently diagnosed with a gene mutation MTHFR A1298C which is part of the cause of the B12 deficiency. It also has to do with not being able to process Folic Acid and methelation.
koel says
Is taking 1500mcg of mecobalamin safe while in ttc phase.?During my miscarriage I was diagnosed with b12 deficiency but it was not a genetic one.I have been taking 1500mcg of mecobalamin for the last 3 to four month should I continue it while ttc?Please advice.
Summer says
I visited with my family doctor today because I’ve been feeling crummy lately — hot and cold flashes, confusion, and other mental symptoms, like not being able to articulate simple thoughts, stuttering, forgetting the route to a familiar destination, etc. Just got my labs back and my B-12 level was 325. I’m in my 50’s, happily married, working full time in a job that requires sharp analytical thinking and we have an elementary aged child. Feeling befuddled and inept is not “normal” for me, but 325 is a normal B-12 level according to my doctor. What should my next step be?
Madge says
Hi Summer,
Serum vitamin B12 is not necessarily the whole answer, although it is a good start. For you mental processing you need methylation, which requires both folate and vitamin B12. You could get your intracellular folate analysed, as this is pretty indicative. Also you need your vitamin D levels to be above 100. All these add to methylation and mitochondrial function.
Lynn_M says
Madge,
Since the followers of this forum are international, sometimes this creates confusion when referring to lab values. In the USA, the Vitamin D form of 25(OH) D is specified as ng/ml. I believe the Australians use nmol/l. 2.5 x ng/ml = 1 nmol/l. >100 ng/ml is considered excessive, so your recommendation of >100 could get someone in trouble if they don’t know what units you’re using.
Furthermore, based on new Vitamin D research, Chris Kresser has lowered his recommended Vitamin D level down to a range of 25 to 50, with a target of 35. He explains why here: http://chriskresser.com/surprising-new-vitamin-d-research-the-myth-of-multi-tasking-and-how-the-internet-is-rewiring-our-brains.
Madge says
Lynn,
You are absolutely right about the confusion with units. I don’t know why, but you would think that the world could agree on units.
As for recommendations, I don’t know why Kris would reduce the recommended values. Experiments with mitochondrial energy production have shown that it still increasing above 100 nmol/L (40 ng/ml, 16 IU/ml) .There is some info at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/ . I note there that they are suggesting that the maximum you should have is 125nm/L (50 ng/ml).
Jenn says
Chris Kresser does not know it all..I glean from him what I don’t get from my functional MD top docs..Vitamin D council is increasing their RDA.. I take 5,000 iu a day just to be in range..verified via genomics testing that I don’t convert it well.
Lynn_M says
I forget to say Chris’ target range recommendation for 25(OH) D is 25-50 ng/ml.
Summer,
The Japanese use 500 as their lower threshold for normal for Vit B12. The USA lower limit for normal is much too low.
Furthermore, the Vit B12 test measures the total of both the active and inactive components of Vit B12, the transcobalamin and haptocorrin, respectively. Your level of 325 doesn’t tell you if you have enough of the active transcobalamin.
I suggest you start supplementing methylcobalamin and/or adenosylcobalamin and see if you feel better. You can get them in sublingual forms. Avoid pills – because B12 is such a large molecule, only 1% of it is absorbed orally. However, the product I have found that gave me much greater benefit was a topical oil from b12oils.com. It comes in a light shielded pump. One pump dispenses a bright cherry red oil-based liquid that rubs into the skin in less than a minute.
Your symptoms could well be due to something other than low B-12. But taking supplemental B12 and possibly a folate like Metafolin or L-5-MTHF (not folic acid) will help you rule out if a lack of it is the culprit. Your body will excrete whatever it doesn’t need, no harm done.
Greg says
I agree with both Madge and Lynn about the unit story. Not so sure about the vitamin D levels though. There are many studies showing that you can better resist diabetes and can lower your blood pressure if you have higher vitamin D. Similarly vitamin D is essential for neuronal health, for mitochondrial function and immune function. The problem with ultra high vitamin D can be serum calcium levels. Several studies have used vitamin D at 20,000 IU/day with no side effects. This is further complicated if you have VDR mutations where you may want to consider having your levels at least 100 nmol/L as you are having trouble getting the vitamin D into the cell.
Summer says
Thanks, all, for your response. I didn’t mention in my initial post that both my mother and younger sister are B12 deficient and receive regular injections. When my sister was diagnosed several years ago her levels were close to 0 and she’d already suffered permanent neurological damage. That’s just to explain my quick focus on B12 as a possible cause of my symptoms, especially after finding this article. Thanks again for your good information and suggestions!
Summer says
Thanks, Madge. Just got more lab results back and learned my Vitamin D is 18. My doc put me on 50k 1/wk supplements for 6 months to be rechecked then. He’s still not concerned about my B12, but maybe boosting the Vit D will help. Thanks again for your good advice.
Madge says
Hi Summer, glad that you got some possible explanation for your problem. You should also get your thyroid hormone levels tested as they can also cause problems if you are hypothyroidic, which many woman are (don’t know it is more with women). Not sure if I would be waiting 6 months for the retest. Anyway see how you go. Good luck
Patty says
Summer,
Get tested for the MTHFR Gene, it has a slew of causes including mis carriages, mental fog etc.
stephen says
I am sure there is more to the shortage than just one factory closing but CTV reported: “Sandoz Canada had to close a manufacturing plant in Quebec in February, 2012, to upgrade it to meet U.S. Food and Drug Administration standards. The only other injectable B12 manufacturer in Canada tried to pick up the slack from the closure, but there has been too much demand to catch up, leading to shortages across Canada and the U.S.”
http://www.ctvnews.ca/health/health-headlines/vitamin-b12-users-hit-by-shortages-1.1732525#ixzz30KZxg7zw
Trouble getting a hold of B12 for himself and seeing stories like this one was the motivation for finding a source and making it available to others.
Currently we are only offering Cyanocobalamin, but are looking into branching out as we grow.
As for getting a correct diagnosis – I can only speak for myself in saying it is very hard to get more than 10 minutes with a doctor so it is not surprising it takes some doing to get good treatment!
Madge says
Thanks for the update. At least you can still get the topical Ado/MeCbl mix from b12oils.com definitely a better product than cyanocobalamin. You might want to try that.
stephen says
For full disclosure I’ll start by saying I have a business that sells injectable B12. There is a shortage in north america, so we have open up to sell off shore B12. If you are under the care of a doctor and are having trouble sourcing B12 injections give us a try: vitaminb12direct.com
Madge says
hi Stephen,
Thank you for letting us know. What form of vitamin B12 do you currently sell for injection? In addition, do you know why suddenly there is a shortage of injectable vitamin B12? It appears, if you monitor this post, that it is actually very hard to get Physicians to actually diagnose B12 deficiency. Is this changing?
finndian says
Since most doctors received only about 12 hours of education in nutrition (which they can opt out of) why would you be surprised that Physicians can’t diagnose B12 deficiency? HOW would it change unless they get the education?
California is the first state in the union to make substantial nutritional education mandatory in its medical schools and that was as of January 1 of 2013!
We are living in the dark ages when it comes to nutrition impacting our health. We need to fend for ourselves…. doctors tend to believe only what they learned in school. I guess we all do and thats the problem.
Eliot W. Collins says
My physician completed medical school at least 20 years ago. Just like any of professional, they should be keeping up their continuing education on their own. Everyone here seems to know a great deal about nutrition, and none of us went to medical school. If we can learn it on our own, then so can our physicians.
WF says
Recent GP blood tests show I have low B12, but a test for antibodies proved negative. I have none of the usual causal factors, although my alcohol consumption is higher than the recommended levels. My liver functions test good. I have suffered depression and severe anxiety for many years, and in my 50’s have exhaustion, muscle weakness, poor memory, etc. I am furious that when diagnosed with iron anaemia three years ago, no B12 test was done. I now have those years (and maybe many years before them) in which I may have been accruing neurological damage, and fear this will now predispose me to dementia. I have my present GP (retiring) to thank for investigating my symptoms and discovering my B12 deficiency, although the cause is presently unclear. From my mid 30’s onwards, I drank because I was anxious. I may have been more anxious than average (in the circumstances) because I was low on B12. A dangerous spiral. Why did nobody shoot me full of B12 and warn me about what might be going on? My new GP, consulted today, alerted me to the serious nature of my deficiency, but even she needed to postpone diagnosis until she could take time out to look at possible causes. I await her call……..
Robert says
I am 47 years old and I haven’t eat animal protein for almost 3 months. I do take Methylcobalamin (Vitamin B12) 5000 mcg Nuggets from Solgar .
I just had my B12 and Folate tested and the results were 711 pg/ml and Folate was 6.0 ng/ml.
Do these numbers seem good to you? Thank you
J'Marinde Shephard says
Very interesting article on B12. I want to show it to my doc. Can you tell me what the recommended daily dose is for B12? I am 66 years old and I take 2 (500 mcg) of the Wal-Mart Spring Valley brand B12. It is the ONLY brand I absorb and I cannot take the 1000 mcg size, as I do not absorb it. I also take 2000 IU of Vit D daily. My D levels drop every winter.
Thank you.
Deb says
I have problems keeping adequate B12. In the past I was diagnosed with pernicious anemia. Recently I had DNA tests and was diagnosed with Hemochromatosis. This is usuallly associated with low levels B vitamins and some of the other symptoms mentioned in this article.
Lynn_M says
robstc,
In addition to various blends of adenosylB12 and/or methylB12 and/or hydroxylB12, you can also get a pump of transdermal adenosylB12, all by itself, from http://b12oils.com. Maybe that is the answer you’ve been looking for.
Lynn_M says
To the webmaster of this site:
It’s impossible to post more than what fits in the comment box. When I write more than that, everything I had written disappears. I have to refresh the website and then scroll through all the comments to get to the comment box again. It’s like being forced to do short tweets when commenting.
Lynn_M says
robsct, the transdermoil is available at b12oils.com. HydroxyB12 is not a substitute for adenoB12. After taking sublingual mB12 for years, I felt a real boost when I added subl adenoB12, and even more when I started the transdermoil. With shots, you get peaks and valleys. With transdermoil, you get consistent dosing. Your fears are baseless.
Lynn_M says
robsct,
The transdermoil adeno/methyl B12, or hydro/methyl B12, whichever you chose, is theoretically equal in efficacy to subcutaneous injections and probably superior to IM injections. You don’t need a prescription. None of the hassles you report. What’s not to like?
robsct says
Hi Lynn_M. One problem is that I am not familiar with those products and I have a limited budget to be trying new stuff with. I am worried I would pay big bucks for them and they would not work. I don’t mind the shots and it just seems easier to give myself a shot and I’m done. I have read about the patches although I can’t find any adeno patches. http://www.drdavidspatches.com/b-12-mega-patches/ I would try these other products if I can’t get the shot form. I’d appreciate any links to products you like so I can see what’s available.
robsct says
I have had a heck of a time getting the B-12 injections I need after the cyanocabalimin stopped working. I have decided that my liver has stopped using it because it can no longer remove the cyanide molecule and convert the raw B-12 into the two usable forms. I have gotten the methyl and tried it but it doesn’t give me the energy boost I used to get. I was told I needed the other form also which is adenosylcobalamin but you can’t get that in an injectable form in the US. I found out from a compounding pharmacist that some doctors are using hydroxycobalamin with the methyl for their patients. But I am having a hard time getting my dr to write the necessary prescription for it because she thinks it’s a restricted substance in the US also. The pharmacist says it is not. When I finally get it and use it I will report on how it works. I hope it solves the problem of my low B-12. Since I have had the cyanocabalimin stop working I have had most of my symptoms return over a period of several months (as I have been getting the methyl and trying it) and I can hardly drag myself out of bed again like it used to be. I don’t want to use oils, creams or patches or sprays if I can get shots.
Greg says
Hi Robsct, very interesting about how the cyanocobalamin is not working. I have been following another discussion on another site and this seems to be more common than doctors realize. You are right about removing the cyanide molecule, you need a strongly reducing environment to reduce the cobalt from Co(III) to Co(I) oxidation state. If your intracellular glutathione levels (GSH) are very low you can’t do this. Now it is quite likely that you won’t be able to do this with the hydroxycobalamin either. The problem you will have is that unless your doctor is “hip” to this, you are going to have problems as when they measure your serum B12 levels they will now appear normal as they don’t differentiate what type of B12 you have. To get your energy boost you will need both the adenosyl and methyl (the natural forms) forms of B12. If you want I can try to find the scientific references to support this. It may help you deal with the doctor, although I am not sure if they will allow me to post them.
robsct says
Hi Greg, I’ve been told by the pharmacist at the compounding pharmacy I am dealing with that the hydroxycobalamin does not have the cyanide molecule and some drs are using that with the methyl because the adenosylcobalamin is not available even with a prescription. If that is the case then I don’t see why my body wouldn’t be able to use it. I’d appreciate any info you have on this issue. I am going to try it if I can get it.
Greg says
Hi Robst, you raise many issues with your question. In Europe, both methyl and adenosyl are freely available as food supplements, injections etc. People are moving away from CN-Cbl as a high percentage of people can’t use it. Whilst OHCbl can be used by the body in normal individuals, in those that are really deficient and have low GSH levels it is very poorly used. Further it competes for uptake into the cells making the situation worse. The actual analogues you use in the body are adenosyl and methyl forms of B12. These are the forms that you get from food. They are both available from b12oils.com.
finndian says
Anyone have bad bouts of canker sores as a result of B-12 deficiency?
Madge says
Hi Finndian,
If you check/search on the site you will see that this has been reported before. It is not well known, but apparently it is reported before. Does anyone know why it causes it?
Alicia says
i just got my lab results back from the Dr. and they said i was “low” on my B12. i didn’t get the numbers, however, after reading this article i decided to get the shots. i suffer from occasional migraines mostly but also feel fatigued throughout the day. I am 30 years old and seem to have those “senior moments” quite often as well. i also have had random blackouts- i suffered one just a few days ago, don’t remember a thing but i banged myself up pretty bad. i’ve had blood sugar and thyroid tests- and blood work comes back normal except for being low on b12, vitamin d and sodium. Are blackouts/ fainting spells another symptom of low b12? i even got a cat scan and they didn’t find anything.. i have also been consuming frozen liver “pills” daily and i have been pretty 80/20 paleo for about a year.
do you thing the injections will be a good avenue to try?
thanks for your time!
alicia
Madge says
Hi Alicia,
If you have been eating paleo and eating liver, it may be that you are having absorption problems, maybe you have pernicious anemia, which would mean that you can’t absorb B12 well. You should get some relief from the injections, but if you have PA you will have to take them for life, or get onto the B12 oils. Let us know how you go.
foo says
I have 110pg. How bad is it?
Christine says
In addition to the above comment… I do suffer from depression. Beyond those two things those are my only real issues.
Tracy says
Of course you do. Anyone would with B12 that low.
Christine says
Please help with advice! I am 45 years old. about 5 months ago I had the feeling like something was in my eye. After a few weeks of pain and irritation I went to a cheap eyeglasses store (the kind in a strip mall) for a $20 exam in hopes that the DR. could flip my eyelid and remove the malady. 5 hours, 3 doctors and 2 clinics later I have a diagnosis of optic neuritis. Fast forward to now I have had a clean MRI and a second opinion ruled out optic neuritis. I do not have MS. My B12 was 165. The neurologist ordered an injection. A few days later they called and said that it was a “false positive low”????? and supplements from now on. Pain persists and I had another injection but requested that they check my B12 beforehand. LOW! Although I don’t know the number the just called and said that it was low. I just started amitriptyline a few days ago. I would like to tear my eyeball out at times. I take a handfull of over the counter pain meds which will curb the pain for an hour if I am lucky. I feel like my life is being taken away from me. Will this ever improve?
Tracy says
I would go online and search for a Functional Medicine or Integrative Medicine doctor in your area, or, if you live someplace where Naturopaths can order tests and prescribe meds, go to them. 165 is really low. One shot and supps is not necessarily going to do it. Especially if it turns out you have pernicious anemia which will impede you from being able to absorb b12 orally. Don’t give up. I came back from a deficiency that low and I am doing well.
Greg says
Hi, there is massive tracking of vitamin B12 to the optic nerve. It is sort of obvious because it uses so much energy all day. It is stacked full of mitochondria and thus needs lots and lots of energy. To get all this energy in you need good levels of both adenosyl and methylcobalamin (the two active analogues of vitamin B12). If you search PubMed you will find lots of articles on B12 deficiency and optic neuropathy. In some cases, with the correct treatment the neuropathy is quickly fixed, in many other cases is needs continual high dose treatment. Things that make the neuropathy worse are smoking, vegan diet, diabetes, and elevated homocysteine and MMA levels (also signs of B12 deficiency. Given that sub-clinical vitamin B12 deficiency starts at around 350 ng/L you will have to get your levels up and above that and stable for months to get significant neuronal repair. The caveat is that the B12 levels measured need to be of active B12 – adenosyl and methyl B12.
Jerry says
I have leaky, gut, celiac and lost 8 feet of small intestine to gastric bypass surgery. I take huge amounts of oral B-12 to just barely keep my serum B-12 in the low normal range.
I got a new doctor recently since I went onto Medicare with Kaiser supplement. My new doctor won’t give me a new rx for injectible B-12 – says it’s normal.
Where can I find a doctor or vet to prescribe B-12 injectible for me?
Thanks
Lynn_M says
Jerry,
I suggest you try the topical B12 transdermal oil that was developed by Mentor Pharmaceutical Consulting and released to the market a year ago. It is a mix of methyl and adenosyl B12. It comes in a small pump that releases a cherry red liquid that you rub into your skin. It takes less than a minute to be absorbed.
Look up http://www.vitaminb12deficiency.net.au for more information and use the Contact Us feature to email a request for product and ordering information.
I have used this product for a year and am very happy with my health improvement. This product is comparable in effectiveness to subcutaneous injections of B12, and provides more even availability of B12 than IM injections. No prescription is required. It comes from Australia, so one downside is higher shipping costs.
Madge says
Cruising around on the web, I have that the product has recently become available through b12oils.com . The one you want is the adenosyl/methyl mix. I too have been using the product a year now and it like Lynn, I have found it very good.
Mike S. says
@KMBSM – I’m very sorry you had to suffer so long before getting a proper diagnosis.
You should look into the “active b12 protocol”. (Do a search on Google.) There are discussions at formus.phoenixrising.me. Although this site is primarily focused on CFS, you should find kindred souls with similar experiences.
There’s another blog post about B12 on Chris Kresser’s site that you should also check out: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency .
KMBSM says
Hello, I am so happy to have found this website, for years I’ve been seeing a neurologist who knew me when I first walked into his office with a cane, then onto a walker and now a wheelchair. He knew that I had a lesion on my spine, that my B-12 level was low, kept saying that I might have MS come back in three months. I , like many others, trusted that the doctor knew what he was talking about until I questioned why he wasn’t looking further with testing, second opinions, etc. I finally on my own made a decision to get a second opinion, I went to a neurologist at a major hospital in a major city who sent me for more testing, CatScans, MRI’s and most importantly numerous bloodwork testings, some of which the lab technician never heard of. Within a month and a half after years of searching, this neurologist made the diagnosis of severe B12 deficiency. He said that unfortunately he couldn’t reverse the damage that was done to my spine, my whole left side is weak, similar to someone who has had a stroke or possibly MS. I have been hoping to find a support group to be able to share experiences and hopefully to help each other to learn more about this condition and so that I can help someone so that they don’t have to suffer the same way that I am. The only other website that I have found besides this one is in England. I am 63 years old and am hoping to not only learn more to help myself but also to help others. I feel that doctors should add B-12 testing into routine bloodwork testing.
Peace and Health says
You stated that many Paleo diet followers you see who eat meat 2-3 times a day are B12 def. Why are they not added to the list of groups of people who are at risk of being B12 def?
Mary says
Because unless they have pernicious anemia, like me, they are not at risk. However, having a diet that does not contain viable B12, like vegetarian or veganism, means they are.
Madge says
I would be quite interested to know why people on a paleo diet would be deficient, unless it is lack of folate. Is there something else we are missing
dkaj says
Are they checking folate also?? The two work together. Also, do you have any integrative or natural path doc’s in your town that are more well versed in B-12. This may be the route you need to go. Sometimes, hormones can cause the tiredness also. Have they run full thyroid panels on either of you. T3-T4. Chris Kresser has info about thyroid issues on his blog also. Either or you loosing hair, having extreme pain with menstal cycles, cystic acne, and etc. These can be all signs of thyroid issues also if b-12 is coming up.
Aleatha says
I was wondering if the numbers from b-12 blood tests are the same from the U.S. to other countries?
My first test was 140, five years ago. I moved and got a 195, four months ago. (I live in the U.S.) My doctors once again only give me a shot 1x per month. I came in with numb, hands and feet, fatigue, shortness of breath four months ago. ( I am the one who insisted on the test in the first place or I doubt it would have happened at all ) I am not a vegetarian so it is an absorption issue. 1 month ago I started 2 tabs of 5,000 mcg methylcobalmin sub lingual tabs daily. After 4 months of shots and adding tabs for about a month I went in to the Dr. again because my fatigue was horrible and numbness and shortness of breath was still happening and I had numbness in half my face. They decided to run a new test even though I told them I just had a shot 72 hours earlier. They said if my levels were below 200 again then I must really be deficient. The Dr. wanted to write a prescription for antidepressants but I said no and asked him why he thought I needed it. He thought maybe I was depressed and that was why I was still so tired. He refused to add an extra vitamin shot in a month but was willing to give me major drugs I don’t need? A few days later the nurse called with the ‘good news’ of the test results.I got a 540. They were very happy with that because I was back to ‘normal’. I held the phone with my hand tingling and wondered “What do I do now?” I was considered ‘all better’ according to the doctor.
I read other posts here whose doctors are concerned at 490? What am I missing? My 16 yr old daughter was recently tested (again, at my insistence) because she is tired all the time and her number was 290. They told me she was within normal levels and wasn’t deficient and didn’t even suggest I give her oral b-12. She is tired all the time, is a vegetarian since age 8, and has a family history of B-12 deficiency. I don’t get it!!! I started giving her the same sub-lingual for the last 2 months but she is not much better. If they think she is in normal range they will not give her shots. I thought I would try to give one more idea a try so I took in the book ‘Is it b-12 deficiency?.. and asked the Dr. if he would be willing to read the section for physicians and he said yes and asked for a week to get to it. It has been more than a month and I have not heard anything back even though I called a few days ago to ask the nurse to have him call me. If he dismisses what he reads then what? I will go and get my book back in a day or two if he doesn’t call me. I guess I have his answer by then. I have been to a few other Dr.s after we moved here, but so far they all have the same’ knowledge deficiency’ about B-12 deficiency. I have a life I would like to live. I am don’t want to spend precious energy running all over the state trying to find a doctor. Now I am concerned for my daughter too so I can’t give up. I don’t know where to turn. In the U.S. you have to have a prescription to get shots. I can’t just buy them. I have good insurance and pay highly for it and I can’t get a vitamin shot. I am at a loss. What else should I do?
Greg says
Hi Aleatha,
A couple of answers to your questions.
No the levels given are different between the different countries. In the US the levels are given as pg/ml, whereas in many countries B12 is measured in pmol/L. Also the range defined as deficient is different. In the US and Australia (and probably NZ) the level of “normal is above 190 pmol/L (~250 pg/ml) whereas is Japan “normal” is above 300 pmol/L. So all very confusing. What is worse is that the level is set by the pathology levels as to what is normal ie what they normally see. It has nothing at all to do with what is clinically normal. Literature strongly suggests that if you are below 300 pmol/L (400 pg/ml) you are sub-clinically deficient in VB12. This they measure by raised homocysteine and MMA levels, which are as a result of deficiency.
If you want literature on this to show to your GP, please let me know and I can send you the references.
So, your daughter can be “normal” according to the path lab, but she may not be normal according to the literature, and if she has symptoms that tells you she in not normal.
Now when you are deficient you can be deficient in two forms of vitamin B12, adenosyl (which gives you energy) and methyl VB12, which helps you methylate). My experience is that people who take high dose methylVB12 still can have signs of VB12 deficiency (low energy etc, ) and do very well if they take topical Adenosyl VB12.
The next thing is that if you are deficient and take shot of cyanocobalamin (an inactive form of vitamin B12), more than 50% of people don’t respond to it, as they cannot convert this form to Methyl/adenosyl VB12. When you measure the serum, they measure what you are taking, or injected with, BUT this may not be active VB12 (ie Adenosyl or Methyl).
You can find out more on this at the http://www.vitaminb12deficiency.net.au web-site, and if you have further questions you will find an email contact there.
The book is quite good, but it doesn’t really go into the chemistry very much, and it is more anecdotal. It is a good start – so too is the web-site.
abch says
Hi,
I am a woman, 33 and my vitamin B level is 490. I want to know if it’s low? I was having tinging sensation and muslc weakness in my left leg. After my GP gave me vit B 12 injection, (he said even 490 is in the lower range) I am feeling much better. HThe pain is much less.He’s also given me vitamin b 12 capsules and has asked to get another vitamin B shot in a coupe of days. My question: Is it normal to have such symptoms? And if 490 is low? Please answer. A neruologist (from a hospital which is known to make moeny) suggested a number of tests scaring me it could be MS. I did NOT go for any tests but chose to first meet my GP> The shots have really helped me. Should I still fear MS? Please answer my queries. Thanks!
Mike S. says
@abch – In some parts of the world anything below 500 is considered low. I had symptoms at 480 that were alleviated by B12 supplementation.
The symptoms you describe could be peripheral neuropathy, which is a common symptom of B12 deficiency. B12 deficiency can mimic other symptoms of MS, so it’s important to resolve the deficiency before considering MS as a diagnosis.
The book “Could it be B12?” does a good job of explaining how B12 deficiency mimics many other diseases, and how it is often mis-diagnosed. There’s a chapter on MS that you should find useful.
Lynn_M says
The B12 test measures both active and inactive forms of B12. So it could be that a large proportion of the B12 measured by your test was inactive.
Greg says
I agree with Lynn. What you need to have in serum is vitamin B12 bound to transcobalamin II, which is the transport protein required to get vitamin B12 into the cells. If you chronic inflammatory conditions you can greatly increase serum haptocorrin levels, which in turn may lead to “apparently elevated” VB12. The fact that VB12 treatment helped you as far as symptoms go, strongly suggests that you have a functional VB12 deficiency.
robsct says
I am posting a warning to others here who are searching for B-12 to inject. Not all B-12 is the same. Apparently there are no regulations regarding how much B-12 has to be in 1 ml. I ordered some “cheap” Fenyl B-12 from http://www.defymedical.com out of Tampa Fl. and they supplied the B-12 through a “compounding pharmacy” called APS Pharmacy out of Palm Harbor, Fl. I thought I had found a good price since other online vendors were pricing the same 30 ml bottle at around $170 and this was just $45. The difference is that the cheap stuff is watered down. I got no energy boost or any of the other benefit from the Fenyl B-12. You get what you pay for and I think I got mostly water. I got more benefit from the cyanocobalamin I was using before because it was better quality from American regent through my pharmacy. Buyer beware.
Madge says
Hi Robsct, scanning the site you certainly have been active in trying to track down good treatment. I checked out the site http://defymedical.com/services/89-methylcobalamin-vitamin-b-12-injection which is where they are selling the Methylcobalamin. In order for you to compare the effect to the other injectables you would need to be sure that you are injecting the same analogue of VB12. To get your energy boost you need both methyl and adenosylcobalamin. The form you have just tried is only the methyl form. When you inject CN or OHCbl you potentially can make both forms of VB12, Evidence suggests though, that the conversion of Me to Ado or Ado to Me is incredibly inefficient.
In short, you definitely need BOTH the Ado and MeCbl forms . This is why the TrandermOIl preparation RedB12 was so good for so many.
angel says
Yes, b12 deficiency is Not a vegan thing. Most people don’t get it tested. One thing I didn’t see mentioned was that Caffeine can deplete the body of B12 too. Think about all those sodas children are drinking and then the coffee many american’s are addicted to. Maybe considering all this we all should be making sure we get our levels tested.
Hotspring says
P.S. I guess I am asking for further clarification on the comment that “plant foods said to contain B12 actually contain B12 analogs called cobamides that block intake of and increase the need for true B12.” In another article of yours, Chris, you mention that Kefir has B12 in it. Is this the right kind because it is an animal product? Are you saying that all foods fermented from veggies will deplete B12, or only some of them? Thanks. What does Dr. Campbell-McBride say about this?
Hotspring says
Can anyone weigh in on how or to what extent B12 deficiency is caused by or can be cured by eating fermented foods? In my limited research into this topic it seems that the gut produces b vitamins during the normal digestive process and that many fermented foods have b vitamins (tho not sure about b12 or other kinds of vitamins). Could the B12 deficiencies so common be the result of the fact that our culture does not consume a lot of quality fermented foods anmore (tho there is now renewed interest)? I realize beer and wine and cheese and yogurt are consumed a lot in this culture, but I am thinking more of kefir, kimchi, miso, etc. Ideas?
robsct says
Does anyone know where I can buy the Methylcobalamin B-12 for injections in the USA? It’s not very available and it is very expensive. I do want the shots though. Not interested in other delivery methods. I appreciate a link or a phone number.
Mike S. says
@robsct – In the US you must have a prescription for injectable B12.
robsct says
Mike S., My doctor is ok with giving me a script for B-12 injections. I am already doing C B-12 injections but want to switch to methyl B-12 if I can find any and it’s not really expensive. I will google active B12 protocol as you posted and see what’s there. The only methyl B-12 I’ve found is $75 for 10ml bottle. Thanks.
Mike S. says
I don’t have experience with injections, so I can’t recommend a pharmacy. But freddd (on the Active B12 thread at phoenixrising.me) has one or two suggestions for compounding pharmacies.
If you need B12 in the mean time, I’ve had good results with Enzymatic Therapy B12 taken sub-lingually (?). They’re available at lots of mail-order sources.
Graham says
I am a vegetarian and have for the last two years become increasingly fatigued, had numbness/tingling in my hands and feet, unable to concentrate, difficulty walking from exhaustion and my legs would drop slightly giving me a funny gait.
Despite intensive blood work, they couldn’t find anything wrong with me. I accidently took 10 of my wife’s B12 tablets thinking they were Vitamin D tablets. I was great all day, it was only when I went to take them the next day I discovered my error. My wife looked up B12 defficiency and found your site.
It has been a week now and I am feeling better each day, but can I be checked for deficiency while I am taking 6000+ units a day? Will it cause me any challenge? I haven’t been back to my doctor as I am so angry, they knew I was vegetarian and I had all the symptoms, as did the specialist internist.
robsct says
Graham…just speaking from my experience I was taking 20,000 units of B-12 in tablet (Zipmelt) form per day (4 tablets) and when I was tested for B-12 my levels were off the chart but it wasn’t being used by my body and I felt no improvement. When I finally got my doctor to approve B-12 shots…wow…what a difference. I was amazed. I had increased muscle strength and endurance and all my symptoms vanished. I had been B-12 deficient for years and didn’t know it. But only the shots were effective for me.
Graham says
Thanks robsct, I have increased my intake to 10,000 a day but I am still having symptoms.
My doctor refused to give me shots as my initial reaction to taking the tablets indicated to him that tablets were sufficient.
My B12 level was 455, but I had only been off the tablets for 2 days. That was as long as I could handle as my neuralogical symptoms and fatigue returned very quickly.
Mike S. says
@Graham – The test will be skewed by the B12 you are taking. You have to stop taking it for a long time (days or weeks) before your blood level returns to its previous level. OTOH, there are no negatives to taking more B12 than you need.
FYI – Sub-lingual is more effective than any pill you swallow. And all “methyl B12” are not the same. For more info and suggestions, Google for “active B12 protocol”.
Graham says
Thanks Mike,
I did the google search but regret to say I cannot understand any of it. To many unknown terms for me.
I need it all plain and simple.
I didn’t even understand your statement “FYI – Sub-lingual is more effective than any pill you swallow. And all “methyl B12″ are not the same.”
Mike S. says
Graham,
B12 comes in 3 forms – pills you swallow, pills you let dissolve under your tongue (sub-lingual), and injections. The pills you swallow are absorbed at a very low rate – around 1% for anything over 10 ug. Sub-lingual types are absorbed around 10%, if you keep them in place 30-60 minutes. Injectable B12 is 100% absorbed, but it requires a prescription.
Methyl-B12 (methylcobalamin) and dibencozide (adenosylcobalamin) are the active forms. M-B12 is generally the most useful for to take as supplement, but you may also benefit from taking dibencozide.
M-B12, and probably also dibencozide, degrades to hydroxocobalamin on exposure to light. So it’s important to keep your supplies in a cool, dark place. Hydroxocobalamin is an inactive form of B12, but it may not benefit you as much as the active form. Cyanocobalamin is B12 with a cyanide atom attached. The kidneys are very efficient at getting rid of cyanocobalamin, so it may not stick around long enough for your body to split it into the usable form.
M-B12 is a very complex molecule, and it’s hard to test for variations. The general belief is that some sources of M-B12 are chemically similar, but not as active as other forms. There are other people who are much more sensitive than I am to this difference (such as freddd), and they recommend only certain brands because they produce better results. The current recommendation is Enzymatic Therapy brand for M-B12. I take ET M-B12 and Country Life brand dibencozide, although it’s no longer a recommended brand.
There are a lot of supporting supplements that can help a person with B12 deficiency. Potassium is important. If you develop a muscle twitch or cramps, you need to boost potassium intake, but it’s best to take extra and keep that from happening. Magnesium is important for absorption and use of potassium. Some of the other recommendations are for methylfolate (the active form of folate or folic acid), zinc, calcium, D, E, C, chromium, selenium, TMG, and the other B vitamins.
I took methylfolate for about a year, but had to stop because it made me feel woozy for about an hour afterward. Not everyone needs it or benefits from it.
dkaj says
Hi Chris,
I wanted to see if you have any information on what might cause high b-12 results. My 8 y/o dd came back with a result over 1500. Ped office is not concerned, said they only worry if it is low. My dd has IBS with frusctose malabsorption and she does tend to eat more meat because fruit and veggies are not her favorite. She was also supplementing prior to the test with Re-New life Ultra Flora probiotics (25 billion cells) the week prior to the test. All of her other lab tests have come back normal – CBC and Chemistry panel.
Aleatha says
Thank You Kris!!! Finally, you made sense of so much confusion and answered questions my doctors couldn’t answer. After years of weird symptoms and no resolve I went into the doctor and spilled the beans about every weird seemingly unconnected symptom I had. I didn’t care if they thought I was nuts I wanted help. I had had tons of tests of all kinds as I went in with my symptoms over the course of several years. Scans, blood work, ex-rays, breathing tests,the works. Not once did any doctor check for b-12 levels! A simple, cheap test! Finally that day with a look of exasperation my doctor decided to see if I was deficient in anything. I was in my late 30’s and didn’t seem to have other risk factors, so she doubted it. My level was 150.I got a call right away that I was very low and should come in to get shots. I asked how often and was told 1x per month. I asked why I was deficient or wondered if we shouldn’t figure out the cause and was told that sometimes when people get older this happens. Older? I was 39! The shots helped but I still had symptoms. I was slightly less tired especially a few days after a shot. I was not told I should continue shots indefinitely. I was not a vegetarian, had not had stomach bypass surgery and was not old, so why? My doctor explained that it didn’t really matter because the treatment was the same. B-12 shots. 6 years later I moved across the country and got a new doctor. Now in my mid 40’s I have only added to my symptoms. I had a gap when I didn’t get shots but had started using a daily sub lingual liquid. I went to my new doctor and told him I was b-12 deficient and would need to get shots again. He asked if I was getting them to boost my energy.I said I had many symptoms and was truly deficient. He seemed skeptical. There were troubles obtaining my old records so months passed. I went in for different symptoms which he ran tests about but of course they were normal. I finally insisted he run and b-12 test. In all these years I have gotten worse and my levels came back at 190. I got the same answer as to wanting to find the reason and go the same response. I was told to come in for shots 1x a month. I am now taking matters into my own hands because I felt that I didn’t just have a little vitamin problem. The research I have done has astounded me! I have many of the symptoms of pernicious anemia. I have began to have stomach issues as well. I asked about the difference between pernicious anemia and b-12 deficiency and he looked at me like I was dumb and said that my blood work did not show I was anemic. I called today to see what labs had been run and found out that the one needed to discover if I have pernicious anemia was never run! I have decided that I am going to see a gastroenterology specialist and insist on the tests to find out if I have pernicious anemia, if it’s not that I will check on something else. I now know I have been very under treated for years! I only hope I can feel better once I get proper treatment and some of my damage are not permanent. I feel so cheated! I have lived in big cities, going to doctors with prestigious educations. This is just not hard stuff. I was tired, my hands and feet tingle, I am short of breath for no good reason, my heart sometimes races, now my bowels clear out for no reason and sometimes feel like they are full of acid and burn me. I had such word retrieval problems I was truly scared and tried to laugh it off and wondered why. Your article is the first time anyone has explained what has been happening to me and why!
I hope I can find someone who knows what they are doing and I can receive the treatments I need at the right doses. If my numbers improve,what should I even shoot for? Since most doctors think 200 is in the normal range! I just took my vegetarian daughter in because she has been too tired for her age. I insisted they do a D and B-12. Her D is low (23) and they said her b-12 was normal. I asked for the actual numbers. 270. She is 16! They were perfectly fine with that. I am not.Thank you for your help! I really needed it.
Greg says
Hi Aleatha,
Welcome to the site. If you scroll through it you will find many answers to many questions. One answer you will not find though is why doctors keep failing to recognize, diagnose and treat VB12 deficiency. I think you will find that most people share your frustration. The next thing you will not find is why the doctors keep insisting that you have sufficient VB12 once the path lab says you have. The path labs only report on the standard range that they see from day to day. If you fall within the 95% confidence limit they deem you as “normal”. Literature suggests though that to be clinically normal you should be greater than 400 pg/ml or >300 pmol/L. Even this may be a little low. It is a bit more complicated than this (as you will find as you read more).
Your daughter vitamin D level is extremely low, doctors here are recommending above 100, also her vitamin B12 level is at best marginal.
If you want to be armed with literature to push under the nose of your doctor please contact me directly and I can give you a list of references. grj”@”mentorconsulting.net.
I would strongly urge you to get better treatment. Whilst you have any signs of overt deficiency, remember there are much worse things happening in your brain.
There is also more info at http://www.vitaminb12deficiency.net.au/Home.htm
Good luck.
Aleatha says
Thank you for your information and offer for more. I will follow up. I want to have a solid level of knowledge when I go to the doctor. I hope to remain firm in the face of skepticism and ignorance/apathy, I am not sure which. I have been trying to fix a deficit the size of a bathtub a drop at a time and only once a month at that! No more. I have no idea who can help me but there must be someone in the Salt Lake City area. We have a huge medical university (University of Utah) that does a lot of medical research. Perhaps I can start there. Are there any particular posts here that might be more helpful than others for me? There are so many!
finndian says
You have to understand that doctors get about 12 hours of training in nutrition during their entire schooling. Most wouldn’t know a b12 deficiency if it bit them in the ass. California is the first state in US (and still the only) to make courses in nutrition mandatory in medical schools and that was just last year!
I googled “Salt Lake City Alternative doctors” and the yellow pages show over 150 listings. My alternative doctor is 6th generation Chinese medicine doctor and an MD. He lets me pick a nutritional solution or a prescription for my issues.
tammy lee says
where can I buy decently priced methlycobalamin injections/vial online? some say to watch where u buy it from? thank you..
Ana says
This site I hope will help me as far as changing from Cyanaocobalamin to Methylcobalamin. Same story here just more whacky. Diagnosed at 17, now 24, with injections of Cyana at 1 ml every week, sometimes 2 due to menstrual cycle per general practitioner. Have also started noticing decline in effectiveness of weekly injections with more severe symptoms. Also have severe neuro damage. The important thing to absolutely stress is to not settle with a MD that brushes you off. Also, watch out for shortages of B12 at your pharmacies, as that has been a occurrence for me anyway. Currently keeping an eye on positive RA/Lupus factor. Definitely have pernicious anemia, also sjogrens syndrome. Hopefully will see a difference with change of subcute B12, thank you for the information. 🙂
Greg says
Hi Ana,
Interesting that you were having so many shots of CN-Cbl and still had symptoms that are getting worse. There was a study showing that 50% or people getting CNCbl shots were unresponsive and I guess that you are now one of these. The high inflammatory response seen with RA/Lupus consumes so much VB12 due to reaction with NO produced in the inflammatory process, plus macrophages, which are highly activated in chronic inflammation consume lots of B12 and folate. This is particularly common in people with RA, of whom over 50% are VB12 deficient.
As for switching from CN-Cbl this would certainly be a good idea, as you probably are now in the situation where you can’t convert it to methyl and adenosylcobalamin. Your neuronal conditions would certainly suggest that you need at least MethylCbl, but if you need MeCbl you will also need AdoCbl as well.
Recently it has been shown that 2.4% of all cases of VB12 deficiency are associated with Sjogen,s syndrome, so you effectively have a triple whammy with your RA/Lupus/Sjorgen’s
You probably already know this, but vitamin D is very important as part of the treatment for RA and Lupus, so if you haven’t already had your levels checked it may be advisable to do so. Doctors are currently recommending that vitamin D levels be above 100 nmol/L (`40ng/ml).
Val says
Dear All! I had a really low Vit B12 reading (Total Serum – 84) and had all the usual symptoms as described here – numbing, tingling etc. The i have been on shots for few weeks on a weekly basis then was switched to once every 2 weeks and then switched to once a month basis after a blood work revealed my levels were around 1800. My question is this: I feel pretty bad with all the symptoms coming back right around the time when i am due for a shot. Is this normal? I think i am also suffering from Erectile problems? Could this also be B12 related?
thanks,
Val
Madge says
Dear Val,
Yes this is all to be expected. I don’t know why they only give the shots so infrequently. Clearly the shots are not stocking up the levels of vitamin B12 in the liver or more importantly in the brain, as otherwise you would be able to go for a lot longer without shots. For the life of me I can’t understand why doctors and PA patients don’t understand this. If it was restocking, you can exist for years without another injection, as when people turn to veganism with no VB12 in their diet it takes years to become deficient.
I think that this is one of the huge advantages of the trandermOil approach to vitamin B12 administration, there the material seeps through the skin over time, therefore allowing restocking.
Yes erectile dysfunction, low sperm counts, low libido, etc are all signs of vitamin B12 deficiency.
Val says
Madge – the transdermoil.com is offline. would you consider getting a similar product from Dr. Mercola’s website (http://products.mercola.com/vitamin-b12-spray/) or how about the patches sold through Dr. David? (http://www.drdavidspatches.com/b-12-mega-patches/).
Is there any harm, in your opinion, to take the spray/patch along with the regular shots? Can you actually over dose on the Vit B12?
thanks!
Madge says
Hi Val,
Whilst there is no harm in taking excess VB12 particularly if you tolerate the injections, I personally believe that for people who are deficient the spray and the patch are a waste of money as they deliver so little material.
Apparently the transdermoil site is down for another month due to issues getting a new web-site up and running.
If you really want the product you can email greg at grj”at”mentorconsulting.net. Apparently he has stocks at the moment.
Jessie says
Hi guys,
posted a couple months ago when I was initially diagnosed with B12 deficiency.
So I really think I might have neuropathy. The symptoms eased a lot when I first started getting injections, however lately I have been experiencing some agonizing foot pain. Now I do work part time as well as attending university, which means I’m on my feet a lot, especially at work. But this pain is unbearable. In work I find it so hard to walk and I want to cry with the pain. It’s the usual kind of niggly pains I’d associate with B12, like shooting stabbing pains, mostly in my feet, but it does hit in random spots all over my body. My feet also tingle a lot.
I’m waiting to bring this up with my doctor, but has anyone any similar experiences? The combination of B12 I’m on is neocytamin, should I be on a different combination?
The other day as well I got this really strange bolt of electricity up through my left arm and it was numb and tingly for a few minutes. I’m really worried I have a serious neurological condition or something! Any thoughts, experiences etc, will be greatly appreciated!
DavidEm says
Very informative article. B12 can help with a host of other issues as well, such as healthy hair and skin and even protecting against cancer. If you really want to see some cool results, look into Lipovimino. It is a cocktail of B vitamins, MIC, and amino acids that can help to restore energy, prevent aging, burn fat and so much more. You can find the benefits of both of these here http://www.agemanagementoptimalwellness.com/injectablesupplements.html . You will also find a tid bit on Glutathione which is the Mother of all Antioxidants and will help the results on B vitamin injections.
Nicole says
I am 22 and I am very afraid of this. My mom has MS and it took a very long time for the doctors to figure out what was wrong…I wish there was a way I could help her with things, she has had a very rough time. I am afraid I my get it to, What exactly should I be doing to try to prevent it? :/
Greg says
Sorry Nicole, I was probably a bit rushed with my previous answer, so let me try to clarify it. The latest evidence suggests that people with mutations involved in methylation have a higher incidence of MS than the rest of the population (this explains the genetic linkage quite well). Methylation is required for proper formation of the myelin sheath around neurones, apart from all the other things. Vitamin D and vitamin B12 are both required for stimulation of nerve growth factor production, so if these levels are low then NGF levels are low and so it is hard to repair nerve damage. Both vitamins are also required for correct mitochondrial functioning (which is low in MS), so you need to keep your levels high. Now women have a higher incidence of vitamin D deficiency around the time of puberty, which helps to explain why they have a higher incidence. So in short, given that you can’t change your genes, you need to make sure that you vitamin D levels are above 100 and that you vitamin b12 levels are well above 300 pmol/L. You can also get preliminary evidence of MS from mental score functioning such as can be seen with the now popular Lumosity brain training (no I don’t have shares in it). Email me if you want further info.
Jamie says
This is all quite fascinating to me! There is one major cause that you didn’t mention at all, though… A mutation of the MTHFR gene. It’s estimated that 40-50% of the population has one or more mutations go this gene, but thus far it’s not widely recognized or treated. This is something I have recently been diagnosed with and because it causes you not to process folate & b12 the effect is symptoms of being folate & b12 deficient and can cause a wide variety of health issues.
Greg says
Hi Jamie,
You are so right about the mutations not only in the MTHFR gene, which many concentrate upon, but also in other methylation related genes. As for the incidence, it is arguably highest in the countries that have been supplementing with folate for some time. This the homozygous mutation rate is around 166-18% in the US, but in India, where they don’t supplement it is only 3%. In addition, whilst folate supplementation has reduced spina bifida and associated spinal development conditions by 30%, autism spectrum disorders have increased by over 8-fold since folate supplementation, and possibly this will get worse. FYI and for others I have been trying to update some of the chemistry etc involved, which you can see at
http://vitaminb12deficiency.net.au/
http://www.vitaminb12deficiency.net.au/VB12MTHFR.htm
Please let me know if there is other information that may be useful that I can add to the site.
Mary says
Greg,
Don’t you mean folic acid supplementation in the form of enrichment of breads? It’s so important that we are very clear on folic acid vs folate especially when we are talking about MTFHR. I can’t tell you how many people get diagnosed with MTHFR mutations and are told by their doctors to TAKE FOLIC ACID! UGH!!!! Folate is what they should be taking, specifically methylfolate.
Greg says
Hi Mary,
An interesting technical point, which is worth discussing. Technically folate and folic acid are in fact the same molecule, but the discussions on the web would not lead you to believe this. Thus folic acid is the unionized form of unmethylated folate. When you change the pH of a solution of folic acid (R-COOH), the material becomes ionized, at which time it is known as Folate (“-ate” being understood as the carboxylate ion R- COO-). So if you use sodium hydroxide to alter the pH it would be known as sodium folate (Na+Folate-). Now in the folate cycle all the other forms of folate have different names (how can see that on the diagrammes on the link). Thus you have folate, dihydrofolate, tetrahydrofolate, 5,10-methylenetetrahydrofolate (the first methyl form) and then as you say 5-methyltetrahydrofolate. Now in solution in the body they will be at around pH 7.0, so they will all be in the ionized form (or the “-ate” form).
In the standard multivitamin supplement, the form you will find is generally folic acid, which is the unionized form This is actually the form that will be in the stomach anyway, as the low pH of the stomach ~pH 1.0 will definitely produce the unionized form. Thus, even for the 5MTHF it will be 5MTHFolic acid, when it is processed in the stomach. Once it reaches the small intestine, the pH rises and so the majority of the folic acid and the 5MTHFolic acid with be the “-ate” form. Thus, in the stomach it will be in the “ic” form, but it will be the “ate” form that you will absorb.
Colleen says
Just got on line to order some more B12 oil but the site is no longer operating due to issues with supply and payment.ive nearly run out as my daughter is also using it now.does anyone know if the sites closed permanently or if i can get it from another supplier.In Australia nobody has heard of it in the city i live in.
Greg says
Hi to all,
Yes the web-site was shut down on the week-end. There were several issues that I should not go into.
The current company directors are working through putting up a web-site that more accurately reflects the product and the wishes of those who have been using it. Hopefully this will be within 2-4 weeks.
In the meanwhile if you do want supplies please contact me directly and I will endeavour to get stocks released. Contact at [email protected]
Robert says
Does eating cooked liver as good as raw liver, and how much daily should one take? I just started taking injections 2 month ago
Madge says
Hi Robert,
I gather that you are deficient in vitamin B12. Do you know why? I gather by your wish to eat liver, that it is not because you are a vegan or vegetarian. If you are deficient due to antibodies to intrinsic factor, or similar, then you will not really absorb much vitamin B12, no matter how much or what you eat. IF is the most important of the vitamin B12 transport proteins and if you have antibodies to it you basically won’t get any uptake. You also won’t get much uptake if you have had a bowel resection, have Crohn’s disease or other IBD’s, or are taking ant-acids. I would suggest if you want an alternative source of VB12 to avoid injections that you use the TransdermOil product available at http://transdermoil.com/products/transdermoil-b12 Many of us are using this product, which has turned out to be surprisingly good.
Robert says
Hello Madge
I have no problem taking injections as my daughter is a nurse. I just started taking injections 2 months ago, as I had tingling in my finger and toe tips, and took a blood test and my Doctor put me on 1000 mgms/per month injections. How often should blood test be taked to check Picogram level?
Many thanks
Robert C
Madge says
Hi Robert,
Testing serum levels is a great idea, but to get better evidence of efficacy it is perhaps better to get your serum homocysteine and MMA levels tested. These tell you if you are having functional sufficiency. Thus, depending upon why you are deficient can determine how you respond to injections and how well they do. It would also be better to have little more often as far as restocking you body with VB12. This depends on why you became deficient in the first place.
You can tell if you are restocking or maintaining your levels by measuring in the week or day before you take you next injection. If you levels are getting higher with time that is great. If you basically just going up and down, then I woudl look at an alternative way of getting the VB12 as it means that for half the month you are actually still low.
Robert says
Hi Madge
Thanks for your information about testing, I will bring it up with my Doctor. How often should a test be taken? I was thinking about 6 month intervals, what is your advise?
Many thanks
Robert
Madge says
Hi Robert,
Sorry been away. As for testing, well every week would be too often, but probably if you were to do it after one month, particularly if you want it to be signficantly different from the last time. Mind you, within in the month you should probably experience some differences anyway. I’ve seen a paper sent to me by Greg, where even at levels of 400 pg/ml they were still seeing brain shrinkage. Also if you have been low, you need to restock your stores in the brain, which apparently is very slow and needs a constant slow drip of high dose VB12. Apparently (well so he thinks) that is one of the main advantages of the TransdermOill Ado/Me Cbl mix. You will have to wait for that to come back on sale though.
Hails says
Is it possible that with a level of 326 I could still be suffering from symptoms of deficiency??? It appears in this country anything over 200 is considered normal. I’ve had the relevant part of my intestines removed, so I can’t help but wonder. Are you able to offer an opinion Chris Kresser?
Tara says
Absolutely it is. Check out the book “Could it Be B12: An Epidemic of Misdiagnosis” in which she says that anything under 450 can show symptoms.
Madge says
Hi Hails, it is actually quite hard to determine from a simple blood analysis if you are sub-clinically deficient. Sub-clinical deficiency starts at around 400 ng/ml, so you could be deficient. You almost definitely will be deficient if you have had a significant part of your ileum removed. Similarly if you had had lap-band surgery for weight loss. You will probably also find that you gradually become deficient in other B group vitamins as they are pretty much all absorbed in the same area. VB2 deficiency will give you similar symptoms as too will hypothyroidism, so you probably need to check that out as well.
Lorraine says
My latest number is 290 and I was told just to take 1000 a day. Is that sufficient? I took shots prescribed by my neurologist years ago.
Madge says
Hi Lorraine,
I recently saw a paper where they reckon that you still get brain shrinkage if you levels are as low as 400. Also there is a big correlation between dementia and low VB12, so I would get the levels as high as possible. This is particularly relevant if you have any signs at all of deficiency, such as incontinence, memory lapses, brain fog, unsteadiness on your feet, an inability to stand on one leg with your eyes closed, shakiness or tremor in your hands, macular degeneration, etc, et. In a way it is best to have the symptoms as they are a warning. What is worse is to have low VB12 levels (below 300) and not have symptoms, because you will almost certainly be doing damage and increasing your risk of dementia and cardiovascular disease.
Eduardo says
From Wikipedia: “Only bacteria and archaea have the enzymes required for its synthesis, although many foods are a natural source of B12 because of bacterial symbiosis” and “Industrial production of B12 is through fermentation of selected microorganisms. Streptomyces griseus, a bacterium once thought to be a yeast, was the commercial source of vitamin B12 for many years. The species Pseudomonas denitrificans and Propionibacterium shermanii are more commonly used today.” So vegetarians of all ages, children and elderly included, can remain healthy by taking readily available B12 supplements, no need to eat meat.
patty says
Does anyone know how long the numbness last? I started taking b12 shots approx 8 weeks ago. I waited 2 weeks before I started with the numbness b/c I thought it would go away. LOL. I still have the numbness and it’s driving me crazy!!
Madge says
Hi Patty, from what I can glean, it seems to depend on how long you were deficient before you were treated. For some reason some people can get really low before they have any “real” symptoms. In the time it takes to get that bad they are doing so much damage to things such as their nerves. If you have real nerve damage it may take months or even years to get better. In this time you have to make sure that you still keep taking both the methyl and adenosyl forms of vitamin B12. Most of us should be on them for life, particularly as we age. I trust that you didn’t get cyanocobalamin shots, they are so much less effective than the Ado/Me VB12. Try to think of it as having to replace all the defective insulation on your nerves, molecule by molecule – boy what a task.
Colleen says
Hi everyone,well same old story went to the Dr today and asks for my levels to be tested before I have an injection and continue with using b12 oil.Dr said its not necessary to be tested every 3 months and refused to do so.since diagnosed in June I’ve been tested for pernicious anaemia and had to really convince another Dr to test my active b12 and Mthfr gene.my levels were high last tests and she tells me 1 injection every 3 months and maybe tests once a year. I wasn’t expecting tests every 3 months ,I just trying to understand my body at this stage.
My 16 year old daughter requested her active b12 to be tested and was refused after a lecture on unnecessary tests.my dr wasn’t interested in hearing me telling her I want to know why we’re deficient and is it a coincidence many family members are deficient.she tells me it’s our diet as we don’t have pernicious anaemia so we don’t have an absorption problem.i mentioned my daughter eats meat regularly and so did I and had symptoms than.my nan and auntie also ate meat and developed pernicious anaemia.17 years of not the best quality of life and blaming all my symptoms on my hypothyroid, 3 children with learning disabilities.my daughter had many tests since one and a half years old.never got a diagnosis until age 14 of ADHD and at age 16 b12 deficiency.she always had a sensitive stomache and chest infections with bronichal asthma regularly. one would think all the tests shes had over years were very unnecessary and only needed one important b12 tests .my dr tells me it’s no big deal its not a rare thing your b 12 is fine,even though I don’t feel fine after 3 months .I really don’t want to just go on for another 17 years just feeling low ,thinking nothing can be done.lets hope the red b12 oil works for me .still waiting on Mthfr results.will keep searching til I find a dr that gives a little more support..
Greg says
Hi Colleen,
Sorry to hear about your interactions with the Dr and the lack of a satisfactory treatment. You mentioned before that you were going to get your genetics done, did you end up doing this, and if so what were the results. You have also mentioned that close family members have had similar problems with deficiency in VB12. Do you know why, is it antibodies to IF, cbl mutations of other? I did have a couple of suggestions. You mentioned that you had hypothyroid problems. This (in fact in around 40%) can cause vitamin B12 deficiency. It is a curious link, but if you are low in T4/T3, then you can’t convert your dietary riboflavin to FMD and FAD. FAD is an essential co-factor for MTHFR, so low levels of FAD leads to effectively MTHFR-like problems. More importantly FAD is used in the cross-over energy step in the CAC (Krebb’s cycle) to electron transport chain. Hence this is a big reason why the hypothyroidism can affect both your VB12 levels and your energy levels. Now the other thing you could ask to get tested is your vitamin D levels. These are essential for energy production in the mitochondria and for stopping osteoporosis. If you have low vitamin D levels, hypothyroidism and low methylVB12 you almost certainly will lack energy. Curiously I have found that many people with CFS have mutations in their vitamin D receptor gene. It looks like optimal levels of vitamin D should be above 100 ng/ml, rather than the 50 that is normally quoted. We are still trying to link up all the biochemistry with this. I will try to update the vitaminb12deficiency.net.au site to reflect this in the next week.
judi says
I had burning sensation in my tongue for more than a year. I was evaluated by ENT specialists in Ethiopia and they were giving me various anti fungal agents which didn”t help at all. I had generalized weakness fatigue and depression which I thought was due to overwork. Finally, I collapsed and I was found to have severe Anemia, low WBC count and low Platellate count. I developed severe reaction when they were tranfusing me with platellate.The surprising part is I didn’t have much of neurological symptoms. In retrospect I remember that I some times used to bite my tongue by mistake. I was then evacuated to Bangkok where I was diagnosed to have severe B 12 deficiency and was given high dose of vitamin B 12 daily in the first week which was gradually spaced to a monthly shot. My imptovement was dramatic. The burning sensation subsided immediately within 24 hours. my wbc count and platellates were corrected in 2 weeks time . Hemoglobin took a bit longer but I was told that I had associated Iron deficiency Anemia. My energy came back to normal and I am now taking a monthly shot.
Vit B 12 level can not be determined here in ethiopia. But one impresive flab finding I had was high levels of LDH. Which became normal after treatment.
At the moment cynocobalamin is not available in Ethiopia for the last one year and I am taking a combination of vit B1, B6 and B12 ( Neurobion) shot on my own and doing fine clinically. I thought my story helps and I am sharing to others.
And how do you think I can get Vit B 12 injectable?
Thank you so much!!
Cynthia says
I can anyone advise me? In Feb 2013 my B12 was 100. I was given 5 b12 injections, (not sure what kind) and my levels went up to 770, May 2013, but my folic acid was then deficient, 2.5 range 2.7 to 20. I have been taken 5mg of folic acid for the last 3 months. Now my Folic acid level is 12.6 and my B12 is 400.
My question; is it normal for b12 to drop from 770 to 400 in 4 months. I have been eating meat and eggs daily.
Could the folic acid have caused the B12 to go down?
I would like my levels to be higher than 400, so should I start taking over the counter supplements as my doctor will no way give me more injections when my levels are at 400, range 189- 1162.
Any advice would be appreciated
Greg says
Hi Cynthia, this all sounds pretty normal for VB12 treatment. Firstly they over-dose you incredibly, they when the serum levels are high the doctors walk away thinking that they have done their job. At this stage the serum VB12 start to drop because you haven’t actully “refilled” the liver and so even though you are eating the egss and meat these will certainly help you not get too low, they will not really raise your levels dramatically on their own. Initially, if you have been VB12 deficient you will find that once you start the VB12 that your folate will drop (as you found), then you “expose” you folate deficiency.
I believe that you are right in keeping your levels above 400, but I bet you won’t find a doctor that will say so. If you do, many people who read these posts would certainly like to know who the Dr is.
I would try taking the OTC VB12 supplements as an additional supplement and make sure you monitor your VB12 levels. If they still keep dropping you might have to try to work out why, or take the transdermal VB12.
Cynthia says
Hi Greg, thanks for the reply and you are dead right, as far as my doc is concerned 400 is within a healthy range, so job done! Luckily I don’t have any of the bad symptoms of b12 deficiency, other than fatigue which isn’t as bad as it was when I was deficient.
I am going to take the OTC supplements and get my levels measured in 6 months to make sure that they are rising. My only concern was that if I take the OTC supplements it might hide an underlying issue, (if there is on) or give a false reading? Does that make sense?
Greg says
Hi Cynthia,
Yes you make total sense and it is certainly worth being aware, although perhaps not worrying.
Others may want to comment further on this, and I know that there are many who have been contributing to this site for years. (See Jinny April 11, 2013 at 7:56 am, amongst others) One of the real issues that may be of concern is why you became deficient in the first place, as this may determine whether oral supplementation will work of not. Another issue is how long you were deficient, as this will determine if you have underlying undiagnosed damage. You say that you don’t have any of the other symptoms of deficiency so that is a plus.
If you have an absorption problem, then supplements will be less effective and your levels will drop off over time. You will discover this at the 6 months assessment (a long way off). In the meantime, I would be monitoring for sub-clinical signs of deficiency, and if you are worried get your thyroid function tested, as hypothyroidism is very common and can give some symptoms similar to B12 deficiency (such as the tiredness), it can also cause VB12 deficiency.
Otherwise, you could check out the sites that deal with the causes of vitamin B12 deficiency and see if you fall within any of the categories. You are doing very well in “being aware” which is the main thing. Good luck.
kerry says
My 15 year old daughter as tested very low on B12 and Iron so she has been put on Iron pills but nothing for the B12 at all. This past year she has been diagnosed with bad depression and is now seeing a counsellor and is on antidepressants. She has been diagnosed with ME and has violent head aches and can’t concentrate or remember what she studies. she has been a straight A student up and till now and I am worried cause she has only gone to school once this week and it is an important year. she has terrible pain in her spine but it has all being put down to ME and depression. Could this all be down to her B12 being very low and if so what do I do? please help
C. Miller says
It sounds like there is a lot more going on there. There are many genetic mutations that can cause problems with the methylation pathway cycles. Some triggers can be stress, infections, etc. Whatever the case all these changes trickle down the pathways. Its quite complex but here is a diagram http://www.autismpedia.org/wiki/index.php?title=Image:Methylation-cycle.jpg . One of the major problems is MTHFR genetic mutation which doesn’t allow your body to process folic acid and you must take an activated form like (6S)-5-methyltetrahydrofolic acid, calcium salt or L-methylfolate. Nearly 50% of the population have this mutation. While taking this, you must also try to stay away from folic acid form like in fortified cereals and multi vitamins. dr’s can perform MTHFR test. A larger view of your genes can be ordered from 23andme. Then from there you can find all the problems to address.
With the depression it sounds like there may be problems in the serotonin levels. While antidepressants contain the serotonin and such, there may be other supplements to help boost serotonin naturally. Possibly tests more geared to checking serotonin, dopamine, epinephrine, and norepinephrine levels would be helpful. Another test would be to check homocysteine level.
this article was good too on B12 deficiency anemia – http://www.webmd.com/a-to-z-guides/vitamin-b12-deficiency-anemia-topic-overview. Activated forms of B12 would be a good idea like some of those referenced above. They can be found in health food stores. Hope this helps some
Madge says
I am very surprised that if your daughters B12 levels were low that the doctor didn’t treat it. Looks like he might have known about anemia and low iron, but not that low VB12 can cause the same thing. Subclinical vitamin B12 and its consequences is incredibly poorly understood. Depression is a common symptom of VB12 deficiency and it is surprising given that she tested low that she wasn’t advised to take it. I would certainly stay away from the anti-depressants until you try VB12. You could go to another doctor, armed with all the information on vitamin B12 deficiency and ask for VB12 shots. Alternatively you could try high dose VB12 preparations such as the RedB12 from transdermoil.com Many people who have been deficient have found that this work, myself being one.
Aleatha says
How is your daughter? I am asking because my 16 yr old daughter has been suffering similarly and I am beginning to question many of her struggles as B-12 deficiency, but she is in the low end of ‘normal’ so I am wondering if I can get a doctor to treat her.
C. Miller says
Drew: do you ever experience jaundice coloration? Are you taking any supplements for weight gain or muscle enhancements like in the health food stores–that could raise your creatinine or also high meat diets as well as dehydration? What about diet-do you eat high meat diets or have adequate fruits and veggies? Another question-do you consume enough water in a day?
drew says
I have been experiencing weight loss, fatigure, numbness and sharp pain on the bottom of my feet at few times daily, low appetite. The levels below have already been ran by my doctor but he feels as if I am fine. I am wondering if anyone knows how to interpret these levels and could possibly help me out. I have lost 20+ pounds in the past month to two months and am in the Air Force. These military doctors don’t seem to know a whole lot and I don’t have the choice to be seen off base because my insurance won’t cover it. I was healthy and active at around 165 pounds a year ago and am currently struggling to stay above 130 pounds.
Thyrotropin Sensitive Chemistry/Hematology Test Name Result Units Reference Range
Thyrotropin, Serum or Plasma Quantitative Detection limit <= 0.05 mIU/L 1.75 mcIU/mL (0.34-4.82)
Comprehensive Metabolic Panel Chemistry/Hematology 17 Sep 2013 @ 1831
Test Name Result Units (Reference Range)
Albumin, Serum or Plasma Quantitative 4.9 g/dL (3.4-5.0)
Bilirubin, Serum or Plasma Quantitative 1.5 Higher Than Normal mg/dL (1.0)
Calcium, Serum or Plasma Quantitative 9.8 mg/dL (8.4-10.2)
Carbon Dioxide, Serum or Plasma Quantitative 25.7 mmol/L (21-32)
Creatinine, Serum or Plasma Quantitative 1.5 Higher Than Normal mg/dL (0.6-1.3)
Glucose, Serum or Plasma Quantitative 84 mg/dL (70-110)
Alkaline Phosphatase, Serum or Plasma Quantitative 96 U/L (50-136)
Potassium, Serum or Plasma Quantitative 4.8 mmol/L (3.6-5.0)
Protein, Serum or Plasma Quantitative 7.9 g/dL (6.4-8.2)
Sodium, Serum or Plasma Quantitative 142 mmol/L (137-145)
Alanine Aminotransferase, Serum or Plasma Quantitative 30 U/L (30-65)
Aspartate Aminotransferase, Serum or Plasma Quantitative 10 Lower Than Normal U/L (15-37)
Urea Nitrogen, Serum or Plasma Quantitative 15 mg/dL (7-18)
Chloride, Serum or Plasma Quantitative 103 mmol/L (98-108)
CBC Profile Chemistry/Hematology 17 Sep 2013 @ 1831
Test Name Result Units (Reference Range)
Leukocytes, Blood Quantitative Automated Count 9.88 x10(3)/mcL (4.0-10.2)
Erythrocytes, Blood Quantitative Automated Count 4.57 Lower Than Normal x10(6)/mcL (4.69-6.13)
Hemoglobin, Blood Quantitative 15.3 g/dL (13.5-17.5)
Hematocrit, Blood Quantitative Automated Count 42.3 % (41-53)
Mean Corpuscular Volume, RBC Quantitative Automated Count 92.6 fL (80-100)
Erythrocyte Mean Corpuscular Hemoglobin, RBC Quantitative Automated Count 33.5 pg (26-34)
Erythrocyte Mean Corpuscular Hemoglobin Concentration, RBC Quantitative Automated Count 36.2 Higher Than Normal g/dL (31-36)
Platelets, Blood Quantitative Automated Count 265 x10(3)/mcL (150-400)
Erythrocyte Distribution Width CV, RBC Quantitative Automated Count 12.5 % (11.5-14.5)
Platelet Mean Volume, Blood Quantitative Automated 9.7 fL (8.3-12.0)
Neutrophils/100 Leukocytes, Blood Quantitative Automated Count 72.7 % (37.0-80.0)
Lymphocytes/100 Leukocytes, Blood Quantitative Automated Count 18.7 % (10.0-50.0)
Monocytes/100 Leukocytes, Blood Quantitative Automated Count 7.6 % (0.0-12.0)
Eosinophils/100 Leukocytes, Blood Quantitative Automated Count 0.6 % (0.0-7.0)
Basophils/100 Leukocytes, Blood Quantitative Automated Count 0.4 % (0.0-2.5)
Microscopic Urine Chemistry/Hematology 17 Sep 2013 @ 1830
Test Name Result Units Reference Range
Leukocytes, Urine Sediment Quantitative Light Microscopy HPF NONE OBSERVED /HPF (NONEOBS)
Erythrocytes, Urine Sediment Quantitative Light Microscopy HPF NONE OBSERVED /HPF (0-2)
Bacteria, Urine Sediment Quantitative Light Microscopy HPF TRACE /HPF (NEG)
Mucus, Urine Sediment Semi-Quantitative Light Microscopy 1+ Higher Than Normal (NEG)
Epithelial Cells.Squamous, Urine Sediment Quantitative Light Microscopy HPF 0-1 /HPF (RARE)
Urinalysis Chemistry/Hematology 17 Sep 2013 @ 1830
Test Name Result Units Reference Range
Color, Urine Qualitative YELLOW (YELLOW)
Appearance, Urine Qualitative CLEAR (CLEAR)
Specific Gravity, Urine Quantitative Test Strip 1.025 (1.005-1.025)
Protein, Urine Semi-Quantitative Test Strip 2+ (NEGATIVE)
Glucose, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
Ketones, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
Bilirubin, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
Blood, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
Nitrite, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
Leukocyte Esterase, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
pH, Urine Semi-Quantitative Test Strip 6.0 (5.0-7.5)
Urobilinogen, Urine Quantitative Test Strip 0.2 EU/dL (0.2-1.0)
C. Miller says
Drew: do you ever experience jaundice coloration? Are you taking any supplements for weight gain or muscle enhancements like in the health food stores–that could raise your creatinine or also high meat diets as well as dehydration? What about diet-do you eat high meat diets or have adequate fruits and veggies? Another question-do you consume enough water in a day?
Greg says
Hi Drew,
Looks like a fairly comprehensive blood test, where the the only real anomaly appears to RBC count. Weight loss can occur in people with vitamin B12 deficiency, which I notice that they haven’t tested. You mention that you are in the armed forces. Any chance that you have been OS and got a gut infection. Giardia is a very common contaminant of foreign water and there is evidence that it can cause vitamin B12 deficiency. Other gastro-intestinal bacteria can possibly do the same the most notable of which would be H. pylori, which is also known to cause VB12 deficiency.
I would suggest that you get this checked out.
FYI here is a reference on the Giardia
Aust N Z J Med. 1986 Feb;16(1):78-9.
Giardia infection causes vitamin B12 deficiency.
Cordingley FT, Crawford GP.
Abstract
A patient presented with hematological evidence of vitamin B12 deficiency. The Schilling test performed suggested intestinal malabsorption and further investigation revealed heavy infestation with Giardia lamblia. Specific treatment of the giardiasis with tinidazole resulted in correction of the abnormalities in vitamin B12 absorption. These findings, together with the absence of other causes of vitamin B12 deficiency, suggest that giardiasis should be considered as a cause of vitamin B12 deficiency
Let the group know how you go. There are a lot of people with a lot of experience in this group.
C. Miller says
It is not written up anywhere. This is actually on my 4 year old daughter. I am just starting with the genetics up and seeing the whole picture. Both her and I started having crazy symptoms about a year and half ago and God just keeps leading further in. I just kept asking the questions and researching. It was surprising on the cobalt. It wasn’t the vitamin at first, but then realized all the foods containing cobalt were causing more and more of a problem-fortified grains, milk (cattle are given in feed or spread in fertilizers in pastures and fields). Other things with other forms of cobalt are sidewalks, metals are often combined with it like chrome or nickel, so then you have to think about doorknobs, faucets, metal fasteners, even silverware and pots and pans. Crazy! But it helped. Hers could be seen on the skin, and i thought if it burned her skin, imagine how the body is reacting to it inside. So then you ask, why does she react all of a sudden to it? why are there other strange allergies showing up? is there a bigger picture we’re not seeing? We can’t just treat the symptom, it’ll never solve the problem. And what was the original trigger? But the strange thing is that we’re not the only ones. Since that time others across the US started having strange problems too that no one can figure out the cause or problem. Makes you wonder what the common link is or was. The only thing I can think of common may have been vaccines or shots, unless something in the air or water supply b/c I have seen some reactions in animals too.
So this is going longer than i’m sure anyone wants to know. She is now able to withstand about 1/4 dropper Methyl cobalamin, and with no skin reaction from a patch test. For all the other things going on it was the best form over hydroxl form. We’re still working on it as well as other vitamins. Due to other allergens we can’t take just any multivitamin.
I suggest for anyone not getting anywhere with B12 to look further. Without addressing other cycles, you may keep taking more and more b12 to no avail. The cycles I refer to are Methylation cycle, folate cycle, BH4 cycle, urea cycle, homocysteine, etc. There are so many conditions or symptoms wrapped up in here-heart trouble, anger, sugar issues, cancers, allergies, depression, blood clots, etc.
C. Miller says
Yeah, it was a patch test and it burned the skin to a scab in 2 days. That lasted nearly 2-3 months. It was anything cobalt-so more of the unactivated form of B12; which is in anything fortified. So we stayed away from all foods containing it and it got better to an extent. when those foods were reintroduced skin areas would flare up, or blister and such. There are other things to worry about when not having b12 like anemia, as well as hindering other cycles. So as time progressed we were able to try activated form of B12. It is handled fairly well, but it seems is better if mixed with vitamin C supplements. Both separately seemed to not work as good as with them mixed together. But you also have to be careful as vit c at a certain strength will counter the B12. There are also other supplements involved. But its almost like everyone is a case by case study as the genetics may not work the same in all.
Greg says
Thanks CM for the information. So as far as you are aware were you allergic to all of CNCbl, OHCbl, AdoCbl and/or MeCbl. Supplements are generally CN-Cbl, which was an historical mistake. Some people can’t handle the CN that is produced. This is the inactive form of the vitamin. When you say activated forms, do you mean Ado and MeCbl? As you know the cobalt is in all forms, but it is hardest to “get at” in the AdoCbl. The OHCbl is actually quite reactive with many, many things, such as GSH, thiols, NO, NO2, sulphite, sulphate, so it could “look” as if it was reactive, but if it grabbed something else it may have been that. Very hard to tell without running a proper panel of material against it. Most people with an allergy to cobalt are allergic to “free” cobalt, not porphyrin bound cobalt. The cobalt chelated into VB12 is almost impossible to remove from the corrin ring in humans, which makes it very different to say the iron in heme, which is released. I know that there was a paper on toxicity of cobalt to cells with some reference to the appearance of cobalt in urine. At best the science was questionable. Some of the papers on allergy to VB12 have questioned that it is actually the VB12 that people are allergic to and suggested that it is actually a contaminant in purification. At one stage nearly all of the VB12 used in the world came from one supplier in Europe, and I know that that material does have some other non-VB12 material in it. We used to use it and had to extract out the contaminants before we could do any chemistry on it. Not very helpful for the average user though. Thanks for sharing your experience. I don’t suppose it has been written up in any journal that we could quote?
It is good to hear that you have at least found a preparation that you can take now.
GD says
Ok folks – my level was 84 third week of July. Was on weekly shots and now did a blood draw. its now at 1800! does that even make sense? I still feel a bit of tingling / spasms in my groin and calf area on and off. Bit confused now really….
Greg says
Hi GD, Many reasons why it may be high. All that reading does is basically say that the injections got into the body. You don’t know what type of VB12 it is CN-Cbl or otherwise (given that you were injected with CN-Cbl it most probably is this. FYI CN-Cbl is not actually biologically active, it has to be converted to Ado and MeCbl inside the cell for it to be at all useful), and you don’t know what sort of protein it is bound to. It has to be bound to TCII or it is useless. Then it has to be transported into the CSF, which is a slow drip-like process. Generally when levels are very high it is bound to haptocorrin (HC) and is not available to the cells. You can have high levels of HC if you have any sort of infection or have psoriasis, RA, or other inflammatory conditions.
Many people who have contributed to the site have had high VB12 levels after treatment. I think most of them agree that basically you have to be driven by the symptomology. It will stop your doctor giving you more shots though, which generally is not a good thing.
If you scroll through the various comments on the site they will give you an idea.
GD says
Greg – you were right! He did cut back on the shots from once a week to twice a week for 2 months and then monthly. After three months we will another blood draw to determine course of action. I had told him that i am still experiencing symptoms of muscle spasms at different areas, tingling/numbing in different areas to which he replied that it is normal and could take some time for all that to go away. He has also advised me against doing an MRI. I cant really sleep at night with all these symptoms….is it the general consensus that the symptoms would stay for a while although VB12 levels are high? Its not like a hungry stomach that doesnt feel hungry anymore after some food ie., not an instantaneous relief of symptoms once the VB12 levels are within reason.
worried sick.
Greg says
Hi GD, I would have thought (and that is just judging from various conversations I have read, and I am not a GP), that if you were getting the shots and your levels are high you should be starting to feel much better. Now there are several caveats on this. Firstly, you were given CNCbl if you are not converting it efficienty to Ado and MeCbl you won’t get the desired effect. In this case you would need to take the Ado/MeCbl mix. Secondly, I don’t know if you smoke, but if you do the CN-Cbl also won’t work well (sorry, but I don’t know, so please don’t be offended). Here again you would need to take either OH Cbl, or the Ado/MeCbl mix. Thirdly, sometimes if you are deficient in magnesium you may still have some symptoms, but you would probably need to have this tested. If you are low, then taking the Magnesium may help.
Some of this may be indicative of why you became deficient in the first place.
I am sure that there are others who may have other suggestions.
C. Miller says
I think the b 12 is just the tip of the ice burg. While addressing the b 12 is essential, it won’t help if other parts of the methylation cycle and other cycles off there aren’t helped as well. At least 50% of the population has defect in the MTHFR gene allowing decreased ability to process folic acid. They in turn need to take activated form. The genetic mutations trickle down from there. Not a lot of doctors look at this big picture. There seems to be triggers that throw this whole system off where supplements are needed then for life.
As with my daughter it has come to an allergic reaction to b 12 and having to completely remove it from her diet until help with methylation cycle was addressed. Only until then was she able to handle an activated form of B12. So I saw with her a back up of B12 to allergic point (or where body couldn’t deal with excess). It seems until looking into the whole genetic makeup that you won’t be able to find all the problems to address.
Greg says
Hi C, you may be right. Could you please describe your symptoms of “allergic reaction to b12”. I know of a couple of people who have reported a reaction to methylVB12, but it was not a classical type 1 to IV hypersensitivity. Thus, there was no wheal and flare on the skin, the reaction type was very delayed, not in 15-30 minutes, and there was no generation of heat. If you lightly scratch the skin and drip some of the VB12 solution onto it do you get a classic wheal and flare reaction?
As for the “trickle” process, you are right, there was a very good paper dealing with how a reduction in substrate in any of the cycle generally reduced the rate in the whole cycle. Given that there is considerable feed-back in many enzymatic reactions as well as the effect of Le Chatelier’s principle one would expect this. There is also the the added affect of improper absorption of many of the B group vitamins in conditions of folate and VB12 insufficiency. So yes you have to look at the whole picture.
Judyj says
Chris Kresser,
I was reading a lot of information about the absorption of B12. Eight years ago, I started having numbness and tingling in my feet, feeling tired and having trouble with memory. I saw about 4 neurologists including one at Cleveland clinic. I had a few MRI’s, spinal and numerous blood tests.
No one could find out what was causing this. They told me to go back to my regular physician.
Two years later a family member told an internal doctor about me. I went to see him and I had another MRI and blood tests and it was was not MS, which none of the MRI’s showed MS, but he found I had a VERY SEVERE B12 deficiency. My level was an extremely low 41. Of course within these past 2 years before he found it was my B12, my conditions were getting worse. He started me on B12 injections regimin which made my level go up but unfortunately, I had permanent nerve damage.
My balance is very bad, I have numbness and tingling from the waist down extreme stiffness and spasms in my legs and feet. And in my hand too. I use the Nasal spray now which my level has been in the 700 range which my dr, is satisfied. But now I have to use a cane, or a rollater, and in the house I just hold onto things. I’m on baclofen and valium for stiffness and spasms. I’m unable to work at any job.
I was evaluated at the Mellon center in Cleveland clinic. I’ve been denied soc. security disability and ssi
each time I’ve applied. Now since it has been 8 years later, I still haven’t fully accepted being disabled but everyday I try my best to get things accomplished but at a slower pace. I wish somehow or way I could get my message out to people how important B12 is.
I just wanted to share my story with you.
If you could email me back to let me know that you received my message.
Thank you.
Judy
Lynn_M says
Judy,
Your story is an indictment of our medical system. If one of those doctors had given you a B12 test earlier on, think of the misery and ill health you might have been spared. And all that expense spared as well.
It’s probable you’re still not getting optimal treatment. In some people, the serum can show an adequate level of B12, but the CNS can still be grossly deficient in B12. Your symptoms suggest you have subacute combined degeneration (SCD). Nasal sprays are not an adequate treatment for SCD.
Freddd (see his prior posts) has made a remarkable recovery from his SCD based on a protocol of his own devising. It’s a very long road, but you too might be able to experience some recovery. Greg’s company, Mentor Consulting, makes a transdermal product called Red B12, that I think is a much better treatment for B12 deficiency diseases. He gave his email previously: [email protected]. Some people have had a recovery previously thought impossible via rigorous application of Red B12. It is possible to replete your CNS B12, and sometimes seemingly permanent nerve damage can be reversed.
Greg says
Hi Judyj,
Thank you for sharing your remarkable story with the group. As Lynn has said it is a remarkable indictment of the general medical system. Every time I read a story like this I am amazed that vitamin B12 deficiency was missed for so long, particularly considering your neuronal symptoms. As Lynn has said it is such an easy thing to at least try early on and the test for deficiency is so cheap and easy. I am sure that you are now well and truly around the literature on VB12 deficiency. I have attempted to add some more information on my web-site http://www.vitaminb12deficiency.net.au . My reading of the literature suggests that it may take months or even years to reverse the neuronal damage, during this time it is essential that you keep your levels up. Once the damage has been done to the neurones, they can recover, but it is very slow. The lipids and myelin basic protein have a very slow turnover time, so these have to be gradually replaced for you to get normal function. In this regard Freddd’s story is relevant as by persisting he gradually got better. Many studies in the literature appear to not take this slow turn over into consideration and finish too early.
As Lynn has also eluded to it is important to get the levels in the CNS up again and several studies have shown that this does not happen with either high dose oral or with sprays or sublinguals, or if it does it is very, very slow, which may explain why it took Freddd so long. It is for this reason that we designed the transdermal product that Lynn eluded to.
Apart from the treatment, one of the most important things to also identify is why you became deficient, as this also has a massive implication later on. Evidence suggests that if you are severely vitamin B12 deficient you also have trouble with intestinal absorption of most of your water soluble vitamins, so it would be useful for you to have your levels of these checked.
So be patient, you are on a long road, but at least you have turned the corner. You will find that this group is very supportive if you have further questions.
Judyj says
Hi Greg,
I was so happy that I finally got a response from somebody. As there are support groups for MS patients there is nothing for people like me and joining this might help me with my depression sometimes. I will read the link you gave me. I will keep you up to date on things.
Thanks!
Judy says
Lynn M
Thanks for the info. I will definitely talk to my doctor about this.
GD says
For people in general that have B12 less than 100 – what was the prognosis? How are you guys feeling and how long did it take to start feeling better? I feel like crap and my B12 is 84 and i have been on shots for 8 weeks now (once a week) and i still feel all the numbing/tingling and muscle spasms! Its like the stock market – one week i am great, another week i feel terrible. Hope its an improving trend though…
Please HELP!
Greg says
Boy 84 is REALLY LOW. IT is going to take you some time to get up over 300, so be patient. Do you know what type of VB12 you are being injected with CN-Cbl, OHCbl, AdoCbl or MeCbl. My guess would be CN-Cbl. If you are getting a small boost following injection that is a good sign. Trouble with injections is that they give a huge amount of VB12, but the effect is only transient. Many discussions with this on the site if you require further info, but just ask if you want more information. There are many people on the site who are only too willing to help.
GD says
Greg – thanks much! I feel great a day after the injection…then i started feeling better days on at a time, then a week at a time. Shortly there after, i started working out again and now i feel like crap – almost like back to square one. Did another blood draw to check my new levels. Waiting on results. I dont know if my withdrawal is more than what i am injecting into my system. Do you know if injections once a week is good enough? I am on the cyanocobalamin B12…forget the actual name. I also take the lozenges nightly. Can you OD on the lozenges or B12 in general?
thanks again to the entire community in general…we shall overcome!
Greg says
Hi GD, So some good news there. At least the VB12 is having some effect as it brings you back “from the grave”. So it now looks like you are in the “overdoing it” category. With your injections, you get a big boost all at once, but it will take you possibly years of injections to get your levels up to say >400 so that they will stay up. Some people with uptake problems need injections for life, so it shows that the injections won’t last and don’t necessarily completely restock the system. So as you try to get your levels up and maintain them you will feel a boost but it will only be transient as your liver stores (and arguably your CNS stores) won’t be “filled up”.
Don’t think many people on the group like CN-Cbl, it is a provitamin and is not converted to AdoCbl and MeCbl as effectively as either HO-Cbl or giving the mix of Me/AdoCbl.
As for the lozengers, there is much better technology out there, and many people complain of the effects on eroding your teeth, etc with lozenges.
Over-dosing, well they have injected 5 gm HOCbl iv for cyanide poisoning, so not very likely with your doses.
Madge says
Greg, don’t you think that the RedB12 would be a better solution? Shouldn’t it give a better release for GD?
Lynn_M says
Madge,
Greg has shared much with me about the biochemistry of B12 and why using a transdermal application such as Red B12, or subcutaneous injections, provides a sustained release of B12 into the body, and thus is far superior to the peaks and troughs experienced from IM injections of B12. I agree with you that GD would be better off with Red B12, but I think Greg is being careful about not overpromoting Red B12.
GD,
I have been using Red B12 from transdermoil.com for around three months, after using sublingual methylB12 for several years. I can tell a noticeable increase in energy and upbeat mood lately. Since I’m taking other supplements as well, it’s hard to attribute that energy strictly to Red B12, but the timing makes me think it’s largely responsible. I am one of those people whose teeth were getting etched from sublingual mB12. With MTHFR, CUBN, and FUT2 mutations, I will be on methyl B12 for life, so I’m grateful that a transdermal application method that gets the B12 into the cellular level is now available.
If you have MTHFR, FUT2, or CUBN mutations, the cyanoB12 isn’t going to do you much good. You will need either hydroxyB12 or methylB12. There are research articles out there that I’ve read with results that say cyanoB12 doesn’t work as well for anyone, even for people without those mutations. CyanoB12 injections are convenient to obtain and cheaper, but for many people cyanoB12 just don’t do the job. Subcutaneous injections are better than IM for B12, but I think Red B12 is even better. No injection needed.
Greg says
I totally agree with Lynn (and no I don’t like to push the product – guess I never was a salesperson).
GD and Madge, what is also very important (and you can see that from Lynn’s comments) is why GD is deficient.Do you know if it is diet, disease or genetics? It is very important to determine this as it makes a lot of difference down the track. Mind you, if you look at all the possible neuronal problems of being deficient in VB12, I for one would also be taking VB12 for life (and for neurones).
Greg says
Lynn,
For some reason my emails not getting to you
sam says
I was feeing fluish the past 3 day with low grade fever, ear ache, tiredness, sinus pain, loss of appetite. The last 2 days have had pins and needle feeing in my arms and legs more just in my arms today and just got some red blemishes on my but. I went to the doc yesterday and he said it was just the flu. don’t have flu symptoms as bad today just pins and needles
I have been on a dairy an gluten free diet off and on since July, trying my best to stay off it but its hard.
I think my calcium is low ad could my b12 be also. I also have 1 petechial on my elbow and one on my chest.
scared I have cancer.
Eliot W. Collins says
Someone recently brought to my attention that the livestock raised on factory farms only supplies sufficient B-12 because these animals are given a B-12 supplement as well. See – http://www.agrilabs.com/Products.aspx?CategoryUid=5&ProductUid=208
Greg says
Hi Eliot,
Great point about the deficiency in cattle and sheep. This is particularly a problem in areas of low cobalt in the soil, and hence the bacteria in the gut of these animals can’t make sufficient vitamin B12 (as no cobalt), hence the cattle or sheep become deficient. This is also an example of what we can learn from these animals as far as vitamin B12 deficiency and its consequences, which are actually quite similar to the human story. Thus in pregnant animals, the VB12 levels in the foetus are a reflection of the mothers. Thus if the mother is deficient, so too is the foetus and neonate. After birth, the levels of VB12 in both mothers and neonate drop dramatically and then slowly climb back. This also happens in humans. Why on earth mothers are not told this escapes me.
The next point is that the symptoms of deficieny in the neonatal animals is similar to humans, failure to thrive, developmental delay etc, etc. Following up further in the literature you also find in animals (as in humans) those that are deficient have poor differentiation in the gut, and have compromised immune systems leading to an inability to maintain the barrier function in the intestine with resultant gastro-intestinal tract problems. If you follow the thread of many of the discussions even on this web-site, it is a very common finding in humans who are VB12 deficient. I would urge all of you who are considering to have a diet low in vitamin B12 to supplement, if only for the sake of the unborn and new-born child. They do not deserve to be developmentally delayed, pre-term and/or have microencephaly (small heads).
In short there is much that we can learn from livestock animals as far as the consequences of cobalt/vitamin B12 deficiency.
I thank you for making us aware of the area, which I for one had temporarily neglected.
Sarah says
I am 22 years old, I was diagnosed with serve B12 deficiency this year. My symptoms started when I was in grade 9 however. I was sitting at my desk when my fingers on my right hand started to feel tingly. The feeling began to slowly move up my right arm, as well as my left. The second set of symptoms I had followed a year later. While showering I became VERY disoriented, dizzy, had tunnel vision, and collapsed. My most recent symptoms, I was speaking to a friend of mine when my head started to feel… airey. I became very dizzy, lost my vision, and in my head all could hear was a household fire alarm going off. I then blacked out while standing and my legs gave out. Luckily my boyfriend was there to break my fall. I had neglected to attend my doctor’s office for regular shots.
Leilani says
Hi,
Can anyone advise me on this: I have pronounced peripheral neuropathy plus significant weakness down my right side – to the extent of walking with crutches now. No gross neurology on MRI scan, but longstanding M.E. I guessed at B12 deficiency and went for a test. After the test I started just taking the sublingual B12 myself while waiting for the results. This helped a bit -but the test came back very high! Over 2000. This has been consistent over the past year. I just came off supplements for 3 weeks to get retested, and my symptoms have really deteriorated as a result – but the test is still sky-high. I can’t get injections because my level is high, and the GP and neurologist have nothing to offer.
So, my question – why could my B12 be really high, with deficiency symptoms that improve with B12?? And what do I do now? I asked for an active B12 test but the lab refused it (English National Health System).
Thanks for any help,
Leilani
Greg says
Hi Leilani,
There will be many others who have contributed to this discussion over the years who have had similar, misleadingly high vitamin B12 levels, who might re-affirm this on the forum. By my records, over half the people who have had similar problems have had levels over 1000 and also have had troubles with their doctors prescribing vitamin B12.
Looking at the literature this paradoxical effect, it is not particularly well dealt with, but it also probably confounds, or affects many studies looking at vitamin B12 deficiency, as if there are people with symptoms such as yours and yet have high vitamin B12 levels, they will say the effect/symptom has nothing to do with vitamin B12 deficiency.
So what can be going on. My guess (as no-one appears to have done the study) is that either you have a very high circulating level of haptocorin (a vitamin B12 binding protein), which keeps the vitamin B12 in serum, but the B12 is not available to nerves etc, so you look as if you have good vitamin B12, but in fact you don’t (yes your active B12 test would tell you this). Another possibility is that you have a bacterial over-load in your intestine that is making defective B12, which once again shows up as positive on the B12 test (once again the active B12 test may tell you this). There is also an increasing amount of evidence that suggests that in chronic inflammation there is continual synthesis of nitric oxide, which reacts with vitamin B12 making NO-VB12, which also is not active, but would show up as B12 in the serum (once again this would show up in the active B12 test).
So if the B12 that is being measured is “inactive B12” you would need to replace it with active B12. This presumably is what was happening when you were supplementing.
Of the people whose levels that I know were high, most if not all appear to have improved with high dose mixed adenosyl/methyl VB12.
Leilani says
Thanks for this, Gregg,
It’s great to have some idea of what to look for. I’ll take your comments to my doctor and find a way to get the active b12 test.
Regards,
Leilani
Catherine says
St. Thomas’s Hospital in London will do an active B12 but you have to pay for it. I investigated and if your GP writes a letter they will carry one out, but the onus is on you to pay.
Greg says
If you need a reference to convince your doctor, here are a couple of Pubmed references, which explain why your levels may be high and also explain why you need the other measurement.
You could either cite the references, or take them in to him. Sorry, but I don’t have PDF copies, but you may be able to request them.
See http://www.ncbi.nlm.nih.gov/pubmed/22306884 and http://www.ncbi.nlm.nih.gov/pubmed/23330849
Leilani says
Great – thank you both.
I have also found a private laboratory called Biolab in England that will do it for a fee. http://www.biolab.co.uk/
AnnF says
I don’t know what my serum level was before I started taking the sublinguals, but it was 800 after. My doctor — who never heard of MMA — advised against taking more B12, which I ignored.
Three months before (when I hadn’t taken B12 yet), I could barely walk into her office, where I complained about all the symptoms I had. After the B12, I practically ran up the stairs to her floor, and had no more complaints.
Kristina says
My B-12 is high and my doctor has no idea if I should continue to take a multi? I have SIBO and IBS.
Greg says
Hi Kristina,
See the comments below
Kristina says
Greg, Thank you very much! I’m going to a new Gastro Dr in a couple of weeks and will be sure to discuss the bacterial overgrowth and my B12 levels and anything else the SIBO is interfering with. I’ve had trouble with my vitamin D levels also. If I could only get rid if this SIBO.
Thanks again,
Kristi
Cari says
Have an important question hoping you can answer as trying to figure out treatment for my daughter. What happens when you are allergic to cobalt/b12? I am at this point. do you think that there is a problem elsewhere in the cycle and the cobalt/b12 just builds up? If on skin it burns/scabs skin. tried testing at home with activated form, but test was inconclusive. when activated form given, skin gets worse. but i fear for anemia too and the effects as to not having it. She has had to stay away from anything that contains it-milk, cheese, fortified foods or grains, etc. not many people dr even deal with this in depth. maybe you can help. we do have her genetic profile too and where other mutations are.
Madge says
Hi Cari, Although this is very rare, it does happen. From careful examination of the literature it is still not clear if it is an allergy to vitamin B12 itself or due to some minor contaminant in the preparation that the person is allergic to. As far as I can see, several people who have been allergic became allergic after having injections. Once they found they were allergic to say cyanocobalamin they switched to hydroxocobalamin. I have not found any references to anyone being allergic to adenosylcobalamin. I would definitely try to source a different brand or type of vitamin B12 and see if that helps. You can just do the little skin test with it.
Leticia says
I have just been seen by an endocrinologist for the first time. He is running a b12 test on me amongst many,many others. I have had so many symptoms of B12 that I believe now that have been “misdiagnosed” all these years when 10 years ago when I was diagnosed with Bi polar and Fibromyalsia because of tingleing pain in my legs and feet that I cringed and procrastinated to put my feet on the floor in the morning. I could barely walk. It wasn’t until I was put on Lyrica that the pain subsided. I take just effexor now and it seems to be controlling the pain. And I was also taking metformin for several years, I have been on and off Iron pills and Vitamin D pills by my primary doctor. I also have all the symptoms of hypoglycimia but blood results of Hypergclycimia. I dont know if that fits in anywhere but I am to the point that I dont care what the news is, I need a definitive answer! Anyone have any ideas? Anyone else have a similar story? HELP!
Mike S. says
Hi Colleen, You’re better off getting potassium from bananas or other food than from supplements. Potatoes, tomatoes, and many other fruits and vegetables also have lots of potassium. If you take a supplement, potassium gluconate is easier on the stomach than potassium chloride. I use potassium gluconate because I don’t eat many fruits or vegetables.
Don’t bother with the magnesium test. The usual tests are notoriously unreliable. (I have a reference to a study showing that RBC magnesium can go in the opposite direction of body load.) It’s best to do a trial with a magnesium supplement and see if you feel better. It’s very hard to overdose on magnesium. Some people do OK with the citrate form, but I find it’s an effective laxative. The amino acid chelated forms are probably best. I prefer the glycinate form. Many people like the malate form.
colleen says
Mike the chemist today gave me Magnesium Forte. to take one a day (Magnesium oxide-heavy457mg,Magnesium citrate nonahydrate 870 mg etc)
Unfortunately i need a script from my Doc to get potassium supplements.As im a vegetarian I do eat alot of fruits & vegetables so will stick to bananas etc for now.
Greg says
Hi to the group, just thought that I would update you on some information that I found with hypothyroidism and vitamin B12 deficiency. Several studies have now shown that up to 40% of people who have hypothyroidism either have anemia or are vitamin B12 deficient. Now that does not include all the people who are sub-clinically deficient in vitamin B12. So what is the link. Well it is a bit complicated and there is quite a detailed description on the http://www.vitaminb12deficiency.net.au web-site. To the short answer is that thyroxin produced in the thyroid, is involved in the conversion of riboflavin (vitamin B2) to FAD. Now FAD, plus vitamin B3 is a co-enzyme for MTHFR, so if you can’t make FAD, then the MTHFR won’t work. You then can have simlar symptoms and deficiency to those with the mutations in the MTHFR gene. One of the reasons that this is hard to diagnose is that hypothyroidism has some similar symptoms to vitamin B12 deficiency. This also has applicability for those with mutations in the MTHFR gene, who should make sure that they are fully “primed” with B2 and B3.
Lynn_M says
Greg,
You mention that those with mutations in the MTHFR gene should make sure they are fully “primed” with B2 and B3. Does it make any difference if the B3 is nicotinic acid, niacinamide, or NADH?
Also, niacin is known to deplete methyl groups. Does this depletion happen only with the nicotinic acid form of B3, or also with niacinamide?
Greg says
Hi Lynn, you definitely need vitamin B3 to make NADH, which is an essential element of the Krebb’s cycle as an electron acceptor and then in the electron transport chain to donate electrons. This is apart from its role in MTHFR. If you are deficient in it, not only will you have problems in making 5MTHF, but your energy systems will definitly “go slow”. No need to go beserk with supplementation though. You can make it from Tryptophan. You can check out the RDA at the Linus Pauling web-site http://lpi.oregonstate.edu/infocenter/vitamins/niacin/ . As for the methyl group depletion, I don’t know if I am a strong advocate of that theory. It is involved in the conversion of methenyl-THF to methylTHF (5MTHF), so technically it is a methyl generator. It has been used at high doses for lipid depletion and atherosclerosis control. Possibly this is due to its role in the CAC. I would, however use nicotinamide, rather than niacin or nicotinic acid, which are supposed to cause flushing.
colleen says
Hi Greg,this just seems to be getting more complicated for me.i had my first lot of B12 injections back in june.my DR gives daily injections i understand other doctors give weekly injections until levels are high enough than 3 monthly for life.i have fely very light headed & extremely tired .im just getting through the days doing the necessary stuff.this is difficult having a 6,8 and 16 year old who are energetiic.ive had tests recently Intrinsic Factor Antibody (negative )Antiparietal Cell Antibody (negative).my serum B12 is 1476 pmol/L.. when i was first tested for B12 my levels were 175 pmol/L .my thyroid meds have been reduced to 100mg a day as i have hypothyroid.now im confused if i had thyroid problems first or B12 deficiency.even though i have been treated for my hypothyroidism for 16 years ,think alot of B12 deficiency symptoms happening back than also.The b12 injections are hydroxocobalamin.i have also purchased the Transdermiol to try when my levels have dropped.think i will get levels tested first & try the oil for abit & get tested again to see results..my Dr doesnt seem to explain alot or want to discuss options ,necessary testing etc.wondering if high levels can make you feel lousy and can it take sometime after treatment to feel normal.just want to work out why im deficient & what tests to have that may help improve things .
Mike S. says
@Colleen – The light-headedness and fatigue can be symptoms of potassium deficiency. You were badly deficient in B12, and that slowed some healing/growth processes in the body. When you replenish your B12 reserve, those processes speed up; which can use up your potassium reserves. Another symptom of potassium deficiency is twitching or cramping muscles. I developed a few facial twitches and leg cramps after I started taking B12. Supplementing potassium and magnesium was very helpful. Potassium and magnesium work together, so it’s a good idea to supplement them together.
Greg says
Hi Colleen,
The chicken and egg story with thyroid and vitamin B12 deficiency. My reading of the chemistry is that the hypothyroidism can theoretically cause the VB12 deficiency, and many people who have been shown to have hypothyroidism are VB12 deficient, supporting that hypothesis. If you were not tested for your VB12 levels early on you won’t know when you became deficient. As for not getting your energy levels up with hydroxocobalamin, my guess would be that either you are not converting it efficiently to adenosylcobalamin, or you have a deficiency in one or more of the othe B group vitamins involved in the citric acid cycle, such as B1, B2, B3 and B5, or zinc (essential for the electron transport chain, ETC). There are genetic conditions where people cannot make AdoCbl and need to be given it, particularly if they are not getting it in their diet. Normal supplements have CN-Cbl at worst or OHCbl at best, so the best source is the diet (red meat). Another important thing for conversion of OHCbl to AdoCbl is intracellular glutathione (GSH). Evidence suggests that the level of GSH inside cells may be reduced if someone is taking too many anti-oxidants. Also if have low levels of sulfur (methionine or Cys) in your diet you can have troubles make GSH, and troubles making some of the ETC proteins. Wait and see how you go with TransdermOil product, if you still lack energy, then it may be the B group vitamins.
colleen says
Thanks Greg Im getting desperate to find an answer as im struggling to get through the days and its affecting my kids.My husband doesnt complain but its not fair when he comes home on his days off he practically does everything & I keep going back to bed.
I try to make sense of what im reading but my brain still isnt functioning how it should & its hard to take it all in & understand it.Im wondering if i should start on the oil now or wait til my B12 levels drop abit from 1476pmol/L .im wondering the oil is going to send my levels up extremely high if im using it once a day.
Greg says
Hi Colleen,
It sounds like there may be a few things to consider here.
This might be a better chat “off-line”. Can you email me at
[email protected] and we can go through the scenarios a bit further?
karen says
I am 41 years old and went to the doctor because my feet and hands were having problems, anyway they diagnois it and said i was b12 low (my test results was 50 and supposed to be in the 300). Anyway they prescribed b12 vitamins one a day.
Does anyone else feel very warm and sometimes hot from taking the b12 vitamins? I am alway warm, when i sleep i am sweating that much that the blankets are damp?
Greg says
Hi Karen,
Probably not all that surprising. If your levels of vitamin B12 were so low, your metabolic rate (which is the rate that you burn energy) was probably very low, and so you were not generating a lot of heat yourself. Now you are having vitamin B12, your mitochondria (the little power-houses in the cell) are able to function faster and they generate the heat. You have probably got used to being colder and so now you feel hotter as your metabolic rate is higher. It is a good sign, it means that the VB12 is working.
GD says
Karen – my levels are awfully low, much like yours – was wondering how you are feeling now and have you had a follow up check on your B12 levels? If you could let me know on how you brought your levels up that would be great. Hope you get to feeling better!
mandie says
hiya, ive been told today that my b12 test has came back low at 168. ive goto have 6 injections in two weeks and one every three months after that. ive got a lot of neurological problems and have recently been put on 150 mg of b2 for glutaric aciduria type 2. ive also been on 5mg of b9 for past 5 or so years. is it just a coincidence that im on 3 different b vitamins or is it all related. i havent got a clue. thanks
Madge says
Oh, that sounds bad, you must be worried. You may have to educate your doctor a bit. All of us have had to do it. Try to find out what type of vitamin B12 he/she is going to inject. If you can get hydroxocobalamin good, but cyanocobalamin is not what you want. Do you know why you are deficient. Is it whatyou eat,or is it some of the genetic problems that so many people on the site have?
You will work out that you need to know. Do you know if you are deficient in anything else?
Rachel says
Recently a doctor I have been seeing has recommended I supplement with B12, I am sure based on an elevated MCV of 101. I have been taking a supplement (2 per day) for at least 18-24 months that includes 50mg B6, 5mg Folic Acid, 1000mcg B12 (methylcobalamine) and Betaine HCL 500mg. I have also exhibited B12 deficiency symptoms, ie. fatigue, memory issues, lack of motivation, numb fingers (recently). The doctor making this recommendation is addressing hormonal issues of note, as I am hypothyroid and my hormones are out of balance so I am taking bioidentical progesterone, estrogen, cortisol and thyroid to address these issues. I am not close to the optimal dose for my thyroid yet which I thought was the main issue causing fatigue. Anyway, I am wondering if I am not absorbing the B12 that i have taken for the past year and a half. I recently started taking a sublingual B12 supplement that is cyanocobalamin to see if I have positive results. Otherwise, I would like to try the methylcobalamine, (have found Jarrow 5mg) but after reading this blog, I am concerned about supplements that should be taken with this form of B12. Are Folic Acid and B6 the supplements that I should take along with this form of B12? If I take the methylcobalamine sublingual, would it be sufficient to take the Folic Acid and B6 orally as long as I take them concurrently? I would appreciate your comment on this.
I love your website! It is refreshing to find medical information that makes sense. I feel affirmed in my own conclusions after looking at the evidence of my own issues. Keep up the good work!
Greg says
Hi Rachel,
Welcome to the group. Interesting problem you have with the hypothyroidism. Looking into the biochemistry thyroxin (made in the thyroid) actually has an effect on conversion of riboflavin (B2) to FAD. When you are low in thyroxin you can’t properly process B2 to make FAD. Now FAD is an essential co-factor in the MTHFR enzyme, which you will read much of on this site. This then means that you can’t properly process 5;10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This in turn means that you have problems processing methylcobalamin (MeCbl) and so it goes on. If you cruise around on http://www.vitaminb12deficiency.net.au and look for the section of MTHFR mutations you will get to the page on the chemistry of it. Sort of helps you to undestand the problem, although not sure if it useful if you don’t have a chemical bent. Oral high dose methylCbl supplements are not great and you will see some discussion on the web-site. Also from the discussions you may see that it looks like you may have to supplement with adenosylCbl as well (it is involved in energy production in the mitochondria).
CN-Cbl definitely is not the best form to take, it is a provitamin and if you smoke or live in a very polluted city it is even worse. Minimun would be OHCbl, with best the mix of Ado and MeCbl.
As for the supplements, it is likely that once you are deficient it has a very negative effect on cell division and maturation, and those who are deficient also have trouble with absorption of the other water soluble vitamins. You definitely need the lot though B1, B2, B3, B5, B6 and B12 (Ado and MeCbl).
heidi says
Hi Rachael
I also have hypothyroidism and have been B12 deficiency. I have found great success using Freddd’s Active B12 protocol for about 15 months. After 6 months I found I could convert T4 to T3 and handle an adequate amount of natural dessicated thyroid hormone to relieve my hypo symptoms. Being hypo and B12 deficient was a real drain on my adrenals! In my opinion, you need to address both the inadequate thyroid hormone and inadequate B12/folate before you will feel well.
I use sublingual methylcobalamin (I like Enzymatic Therapy b12 infusion) and adenosycobalamin (marketed as dibencozide). I keep the B12 in my mouth for 1-2 hours and that way it absorbs well. I also take folate in the form of methylfolate. All of these are available online without a prescription. I avoid folic acid which is not well converted or absorbed, and may block real folate from reaching the cells. I also take a vitamin B combo that contains no folic acid. Pure Encapsulations makes a B combo with extra B6, and no folic acid.
Kaytee says
Hi Greg,
Hcy and MMA all return to normal after treatment commences and usually within 10 days. ‘Treatment’ can be as little as 3mcg. I’ve got a study somewhere. Murphy and Minot also reported that all haematological symptoms return to normal after 10 days. A US study also reports that ‘once treatment commences all haematological indicators return to normal.’
What we’ve got to remember here are that haematological indicators are symptoms indicating a deficiency – that are not a diagnosis. The same goes for the haematological indicators in M&Ms day – except then they were looking at RBCs and reticulocytes.
All it means is that once treatment commences ALL blood tests should revert to normal because those particular symptoms have been remedied. Then you’re just left with the rest.
I don’t know who ‘We’ are. But I think if you are doing any form of research, with a condition is potentially lethal, then you should at least realise the significance of blood test results being resolved very, very, easily.
The people who are reading this page, for the most part, may not realise it but they are very, very, lucky, because they are the ones that have at least had the deficiency identified before they got to the stage that they couldn’t resource information for themselves. But, if they don’t do it right, it can all go wrong very, very quickly.
What I think should be remembered by all is that there is no standard treatment. Murphy and Minot got it right: “Maintenance dosage varies with the needs of each patient.”
Until we know more, then that’s what we all have to do.
Kaytee says
I have no idea what improvements you are seeing with topical applications and how these are measured and against what control groups – I’ve never heard of any scientific studies being carried out, I’ve never heard it suggested. If there is a product however, I’m sure it must be licensed in some way, shape or form.
But if you consider that most treatments for b12, if they are given correctly, produce some form of improvement we have to draw the conclusion that b12 deficient patients improve if given the correct treatment. No surprise there then. M&M proved that in the 1920s.We’ve not come very far, have we?
And you should never use the word ‘cured’ you can only get improvements with on-going treatment. We are, at this stage in history, not able to be cured. In the same way you cannot ‘cure’ a diabetic.
Kaytee says
I also don’t know if you are aware that there is a product, with the initial V (and it’s not Vichy) that have been making a b12 creme for both face and body for several years now. Small amounts of cyanocobalamin admittedly, but this is supposed to stop wrinkles – again no official research.With the amount of stuff I’ve smeared on me in the last 3 years, according to your logic, I should be absolutely fine with no further supplementation. I don’t think so.
Greg says
Hi Kaytee, there is a very famous quote in the formulation world. “Oils aint oils”. Oils are also not creams.
If you know about formulation a cream is a cream, it is not an oil. They have very different properties as far as what the bulk phase is, the percentage of water, surfactants, waxes, oils, etc.
They also have massively different properties as far as skin penetration goes. So I am totally not surprised that your water-based, non-transparent, wax formulation (cream) does not penetrate the skin. This it a totally different formulation to an oil based completely transparent formulation that is the basis of the transdermoil formulation.
So according to my logic, your Stuff that you have smeared on you for 3 years, absolutely wouldn’t work. However, that is probably not what all the manufacturers of skin moisturizers, skin rejuvenators, and those that now promise DNA repair to the skin would say. On the other hand we have much data that says that the transdermoil formulation does work.
Kaytee says
I think whatever studies we are referencing then we are in agreement that more, in this case, may not be better. There are several referenced studies relating to smaller more oft dosages being more effective than the larger, less frequent amounts. This would be confirm by the scientific basis of how b12 is loaded, and it would also be confirmed by the revered pioneers of the treatment for this illness who recommended that patients were dosed, on average, every two weeks, and also that needs varied with each patient. I am, of course, talking about Murphy and Minot.
However, none of the studies prove how effective the treatments are at cellular level. Not that I’ve found anyway. And, we are back to the same old, same old, that such indicators are not available to us and therefore we must treat according to how symptoms are relieved.
When it comes to topical applications. Nice thought. Very simple. But I still can’t see how this would work effectively, as the product currently stands, via this methodology. A patch is different, it is on most of the time, testosterone is different. There are approximately 14 different proteins involved in transporting b12 – it is one of the most complex substances the body utilizes. Has the question been asked if the stores in the liver are analogues – if they haven’t had the correct transportation procedure are they just being stored and not available for utilization? We know that b12 deficient patients carry a lot of b12 in the bowel after it has been through the system but we also know it cannot have been utilized.
Like I said, there are many people out there whose lives depend on b12 – and I might add, most of them have never been recognised as being b12 deficient. They die of unknown causes. Would we really think a topical application would be sufficient to save their lives without being absolutely certain of how this worked and if it worked effectively at cellular level?
After being involved with this subject for several years now and sitting looking at thigh muscles that don’t bother flexing anymore, I am very aware at how this condition can be trivialised by all concerned. I’m including scientists in this because they have never really seen the end results. They really don’t know what happens to people when you take them to the wire. Because most people die of a heart attack, a stroke, cancer or dementia before their bodies deteriorate to the point of extreme emaciation and death.
Personally I wouldn’t be promoting any product until you were absolutely 100% sure of if it worked and how it worked.
This is very very serious stuff.
Kaytee says
I think I should also mention, that no matter what the stores in the liver, it is indicated in malabsorption patients that the enterohepatic system does not function correctly, therefore these stores are not being taken up and recycled properly. Again, another problem which points to us needing a test that effectively establishes whether the b12 is restoring/regenerating/repairing tissues.
Greg says
Hi Kaytee,
I agree with many of your points.
There are however studies showing that at least in some studies you do get material to the cells and alter the metabolism. These studies have looked at changes in MMA and Hcy, and have shown an effect.
We are currently in the final stages of comparing all the types of supplements in those that are deficient. It is taking a long time to organize as one would expect.
As for knowing whether the topical material works before the study, I would say this. We have patients who have had the typical VB12 deficiency muscle tremors that we have managed to “cure”. We have patients with FSHD who have managed to get improvement in muscle strength. We have also caused weight loss in patients, presumably by increasing mitochondrial output. We also have had several people reporting increased energy levels. We are pretty convinced that it works.
I agree about all the problems with the non-diagnosis and even non-treatment of those who are deficient. I personally am appalled at this, having my mother, who was highly intelligent reduced to almost incoherency through the use of metformin and the lack of knowledge of subsequent VB12 deficiency.
There is much to be done in the area, but you have to start somewhere.
Greg says
Hi Kaytee,
I agree with many of your points, particularly about people not being diagnosed with deficiency and dying without ever being tested.
I also think that any replenishment of the system and repair of damage caused by deficiency is going to take a long time, particularly if it involves remodelling of myelin, replacement of MBP, etc. I don’t think that most people realize this, they seem to think that if you get serum levels of VB12 (of unknown type) that that is sufficient. You just have to look at the approach to VB12 injections, where they basically wait until the patient is deficient again before they re-inject. In the meantime the patient has been in partial insufficiency for most of the time. Our calculations suggest that upwards of 20% of the population in the US and Australia is deficient and possibly has signs of sub-clinical deficiency. This is without throwing in the calculation for the 16% or so who are homozygous for MTHFR mutations.
It is for this reason that the transdermal application has so much promise. It slowly releases saturating amounts of VB12 over hours and hours, thereby hopefully allowing for full saturation of TCII and uptake into the cells and transport into the CSF. It is also the reason for including both Ado and MeCbl in the formulation so that you give the cells every chance to operate properly.
Yes it is very serious stuff and much more so than the majority of the medical profession will give credit. You just have to go to the majority of the relevant web-sites that totally avoid the problem or suggesting the solution.
Kaytee says
I think you will find that on the rare occasions MMA levels are tested prior to treatment (in any form) the figures suggest that in certain demographics the percentage is a possible 44% of people suffering from sub-optimal b12.
My concern here is that there is no evidence that topical applications work at all and the ‘science’ behind it is flimsy at best and should not be recommended to patients with a potentially lethal illness. In fact, this is an illness that has always, prior to treatments being available, as a ‘distinct morbid entity.’ You will die if you don’t get the correct treatment.
And the problem has always been that – patients struggling to get the ‘correct’ treatment. And most patients struggle to get the correct treatment and therefore will try anything.
But ‘anything’ doesn’t work either – it still has to be proven – because the risk to the patient is permanent physical injury or possibly death.
That’s why I say, you have to be 100% certain of what you are claiming, because lives depend on it.
Greg says
If I was deficient, this is what I would take, there is nothing that I have seen that would be better.
Why not try it before you defy it?
Allie says
I do not believe there is a 100% remedy for this, what works for some may not for others. Fact of life.
Definitely worth trying.
Madge says
I agree, although I have tried the product that I believe Greg is talking about and it seems to work for me. I have had PA for over 20 years, and have been thoroughly fed up with injections, so it was really nice to try something different and find it works.
Kaytee says
I know that there were studies done on passive diffusion reporting the 1% uptake but have never seen them although the figure is well reported.
The injectible absorption rate studies which I’ve seen, ‘roughly’ because I’m not looking at them, said 100% at 3mcg and 15% at 1,000mcg. I still don’t know just how they established this though.
With the oil I’m certainly confused at how it would be picking up the transport protein in the digestive tract. Using the logic the sales people seem to be using simply means that we could all put some b12 in a carrier oil and rub it on.
Since, like many others, my life depends on getting enough b12, I wouldn’t like to chance that this does pick up protein carriers in some way without substantial evidence.
Greg says
Hi Kaytee,
The 1% is an upper limit on uptake, with particulates it is more like 0.1%. If you use mucoadhesives, thre are some reports of 1%. Bit of a pharmaceutical science question though. I have never seen 15% at 1000 ug, data I have seen is 90% of 1 ug dose, 45% of 5 ug dose, and <10% of 100 ug dose. You can repeat dosing very hour or so, but you need to restimulate the parietal cells to secrete HCl and stored IF. People on antacids absorb much, much less due to inhibition of HCl and IF secretion.
If you look at oral biodistribution studies, you only measture 5% of the absorbed dose go to the liver, the rest is pretty much the same % per gram. Normally with VB12 you have to decide whether to include the material that is in the gut (small intestine, stomach LI) as having been transported, in the process of transport, or travelled back to the intestine, so it is confusing.
With injectable dosing, you get a very similar biodistribution, with around 5% of the retained dose going to the liver. As soon as you over-dose all the "over-dose" goes into the urine.This is also what people report who have hydroxocobalamin who complain that they get purple urine (OHCbl is a purple/red colour, not red or pink). This is the reason why injectable doses don't really load up the liver. If you assume that you actually "loose" 5 ug/day of VB12, and injectable doses last 28 days, you can work out that for an injectable dose of 1 mg dose you only retain around 14%, so the rest is lost. Studies in most animals are very similar, the main difference is the absolute amount that is taken up by the IF-mediated uptake system. From memory some of the studies are reported in the book "Comprehensive B12" by Scneider and Stroinsky. Don't currently have the book though.
As for the "oil" it is not taken orally, it is specially formulated in quite a unique formulation (no not just any oil – I've tried), which is applied topically, and then goes into the skin transdermally. It then persists for hours in the skin, slowly diffusing out and becoming available. It has the advantage in that it can slowly load up the TCII carrier system. I don't know if you are in the area, but if you know the pharmacokinetics, it is similar to testosterone in patches or in topical oils.
My apologies to those who don't like the technical questions, but in this instance perhaps you will be patient with us.
Kaytee says
Hi,
Gregg – Can I ask for links to the studies that show the uptake of b12 via injection/oral/oil treatments, please?
Also can I ask just how the uptake percentages were measured ie though tissue sampling etc?
Thanks.
Greg says
Hi Kaytee, the studies that I refer to have been studies using 57CoVB12, which used to be readily available. They were dosing studies done in mice where all tissue samples were measured. Tissues are dissected out and put in a gamma counter that measures the 57CoVB12. That way you can accurately assess exactly how much gets in. You can also see what happens to it over time.
Unfortunately the studies weren’t published as we didn’t think that is was that important at the time.
The comments on the doses available orally in humans are well known, but you will have to go back many years to find them. 57CoVB12 is not used now.
Studies on transdermal deliver have been done with quite a few molecules, but as yet unpublished. They have shown good uptake through the skin with water soluble molecules, even, proteins as big as 150,000 MW.
If you are interested I can send you pre-print material, but as it isn’t published as yet I can’t put it on line.
The important thing in all of this is that one must understand that just as there is a transporter (intrinsic factor) to get VB12 into the body orally, there is also one (transcoblamin II) to get VB12 into all tissues. If the VB12 is not on the transporter it doesn’t get into the cells where you need it.
Limited uptake of vitamin B12 orally is very well known, however, there seems to be comments suggesting that it magically gets across the intact cell membrane if you throw high enough doses at it. One way of thinking about it is by thinking of cars and a ferry. The ferry will only take so many cars across the water at a time. It doesn’t matter if you have 2 or 1 million cars waiting, it only takes the same number across. High dose oral is a very similar situation. Lots of VB12 but only a limited number of ferries. If you want to test it yourself, take some of the high dose VB12 (methyl or adenosyl or CN, or OHCbl. Dissolve it in water and then see if you can get it into vegetable oil. IT WON’T go in. The cell membrane in the gut that you are trying to get across is like the oil. Even water itself won’t penetrate the cell memebrane unless there is a pore – look up aquaporins if you are interested..
patricia says
Hello Chris, I follow a FODMAPS diet and see that b12 sublinguals always have some kind of sugar alcohol (e.g. sorbitol) that really aggravate my gut.
Any suggestion on how to supplement with b12 for those of us who have gut issues (which, not coincidentally, are why I need b12 in the first place)? Should I open my methylcobalamin capsule and try to let the powder dissolve under my tongue?
Greg says
Hi Patricia,
We appreciate this problem. There are two issues here, firstly the mode of delivery and secondly the problem with your gut issues.
The amount of material actually absorbed from sub-linguals and high dose oral is at maximum 1%, even in an intact gut. Given that you have intestinal issues it will be less.
There is a transdermal delivery system that has recently been developed with a product that delivers both Adenosyl and methylcobalamin. Data suggests that AdoCbl is subverted to trying to make MeCbl, so you become deficient in both, hence the dual delivery.
The product is available from http://transdermoil.com/products/transdermoil-b12
Julee Ellison says
Greg, are you saying that the B12 Infusion (methyl cobalamin) a lot of us have been taking is not really any good? I am curious about the product you posted, and how it is more absorbable by the body. Thank you.
Greg says
Hi Julee,
You raise some interesting points that I will try to address.
Firstly the high dose oral/sublinqual tablets, gels, lozenges and sprays. All of these work on a similar type of principle, and that is that if you take enough material you will get a little bit of the material in. The “little” bit is pretty much proportional to the amount that you deliver and is about 1% of the dose. So for a 1 mg dose you get around 10 ug across the gut wall. Now this is marginally better than the normal intrnsic factor-mediated (IF) uptake, which is studies in humans have show can be up to 90% of 1 ug dose, and 45% of 5-10 ug dose. Dosing studies have shown that basically this is the amount that you can get in via the specific uptake mechanism. In order to increase the amount you have to greatly increase the dose administered, hence the high dose formulations.
The second question is the type of VB12 delivered. In the body you use methylcobalamin as part of the methylation cycle, which can be “upset” or perturbed in those with the MTHFR mutations (a topic also discussed on this forum). This is a hugely important cycle and data now suggests that if you don’t methylate properly you can get increased incidence of MS, RA, dementia, etc.
The other form of VB12 you use in the body is adenosylcobalamin (co-enzyme B12). This is used in the mitochondria for energy production. If you take high dose methylCbl, and you don’t take adenosylcobalamin, you can still feel like you lack in energy. So really you need both.
Now getting onto the transdermal oil. This contains both forms, methyl and adenolsylcobalamin. Uptake through the skin in similar to how a “vanishing cream” vanishes. Little tiny drops of water contain the adenosyl and methylcobalamin within a special oil that you rub into the skin. If you enquire of the company they can arrange for you to have either separately or together. I am happy to talk about this “off-line” if you want. I also have further information on the web-site http://www.vitaminb12deficiency.net.au , which I update as I get further information.
Oh the other thing is, once you are deficient enough to notice, you probably have lost 3-4 mg of stores of VB12. If you only replace this at 5-10 ug /day you can see that it will take a long, long time to get your levels normal.
Julee says
First, thank you so much for replying! I have asked several questions on here before, and have only ever gotten one response. I asked about the product you mention because after taking the B12 I mentioned for over a year, I had company this last week and because of a crazy schedule, I have not taken it this past week … And I feel better, more energized. I just wonder if it is doing anything for me. I am due to go to the doctor and get all of my blood work done, so we shall see if my numbers are any different.
Greg says
hi Julee,
Thanks for the thanks, a pleasure.
I don’t know your whole history so it is hard for me to judge from here.
What I can tell you is that the long term consequences for VB12 deficiency below 300 pmol/L are not good, and include nearly all the symptoms that you read about on this site. Other conditions such as eyesight, hearing, incontinence, RA, MS, dementia and Alzheimer’s are even more worrying. Whilst I don’t have any of these problems, I still take the topical B12, on a just in case basis. I can tell you though that I believe that my memory is improving, and that my hearing seems to be more accute.
So, if you can find a source of VB12 that doesn’t give you the side effects of your product then I for one would be on it.
Jessie says
I’m a 19 year old girl, and I was diagnosed with B12 deficiency about a month ago. I have since recently started B12 injections and a strong dose of folic acid. I was constantly tired and I had these sort of niggly pains in my feet and hands. I’d also get like shocks or zaps randomly in parts of my body. It’s still happening quite a bit, but I’ve only had 2 injections so far. I’m getting my next one this week. I’m just wondering does anyone else suffer with these symptoms?
It’s very annoying and often keeps me awake. I find myself very twitchy and irritable also. Like if someone touches off me I’ll jump. I’m quite cranky and hard to be around. The smallest things will set me off. It’s affecting my relationship with my boyfriend also. He’s very patient and understanding, but often I find I take my frustration out on him, which isn’t fair I know, and then I feel horrible afterwards. I’ll get very teary too.
Has anyone had any similar experiences? Does it get better? I’m hoping the more injections I get the more I’ll feel like my old self, because I’m quite down at the moment. I feel like I’m angry all the time!
Mike S. says
@Jessie – Those are all symptoms of B12 deficiency, and they should improve with supplementation. Google for “peripheral neuropathy B12”. If you can find the book “Could it Be B12?” (second edition) at a library or bookstore, read chapters 3 and 4 to better understand what’s happening to you.
If the shots don’t provide improvement*, try sub-lingual B12 tablets. I take Enzymatic Therapy B12 Infusion, Country Life Dibencozide (another form of B12), and Solgar Metafolin daily (folate is essential for the use of B12). The B12 and Dibencozide tablets should be held under the tongue or between lip and gum for at least 30 minutes, or an hour if you can manage it. I usually feel a bit spacey for an hour after taking them, so I take them when I’m not doing anything challenging.
*One reason the shots may not help is that they often include inactive forms of B12 – cyanocobalamin or hydroxocobalamin. Some people have trouble converting them to active forms. It’s better to get the active forms – methylcobalamin and/or adenosylcobalamin/dibencozide. Try to talk your doctor into prescribing methylcobalamin shots if you’re getting something else. The book “Could it Be B12?” has good info to help convince your doctor to make the change.
Greg says
Hi Jessie, Mike is right about the symptoms.
What your doctor may not have told you is that once you have peripheral neuropathy or other nerve damage it may take quite a while before the symptoms go away. If you have been sub-clinically deficient for long enough you actually start making faulty myelin and faulty myelin basic protein. Now the body only turns these over very slowly, so you have to wait until the faulty material is replaced before all of your symptoms disappear.
Also you need to check what shots you are getting. Cyanocobalamin is the worst, followed by hydroxycobalamin. The best thing would be the mixed methyl and adenosylcobalamin. You can get the mix from http://transdermoil.com.
If you are really deficient you need much more than you can obtain from sub-linquals or high dose oral tablets.
One thing that is not discussed in the forum is that you actually need to get your VB12 onto the specific transporter for vitamin B12, transcobalamin II. If it is not on this transporter the vitamin B12 will not get into the cells or the brain, but it will be wasted. So it may look like your serum levels of vitamin B12 have improved but if it is not on transcobalamin II you might as well not have it. Sub-linguals and high dose oral does not effectively load up the transporter, although is does give a temporary boost in serum VB12 levels. This is born out by several comparative studies on efficacy.
Jessie says
@Mike S. @Greg Thank you both for your informative advice. I’m getting my next injection tomorrow, So I will speak to my doctor about all of what you mentioned then.
I also have another inquiry. Initially when my symptoms began, I was away at university so I visited the doctor down there. She did sensory tests etc, and ordered blood tests as she suspected it could be an issue with B12. I was told to make an appointment in a week to check back for results. Long story short I never got the results. I had horrible trouble getting them back due to an incompetent receptionist. She kept telling me she would get someone to call me with results, which never happened, she also told me they couldn’t give the results to my own GP back home, unless he requested for them in writing.
Anyway after that I went away for a month at the start of the summer and symptoms persisted. When I returned I went straight to my GP at home, explained the previous situation and asked for more blood tests and a B12 check. Low and behold I was badly deficient. Now, what I’m wondering is had I left it longer, lets say I didn’t bother getting more bloods done after not getting the first set back, would everything have gotten worse? I’m just really angry at my University’s health center and the treatment I received.
Is it serious enough to actually pursue action over? Just looking for opinions. Thank you again. Everyone here is so helpful.
Greg says
Hi Jessie, we do helpful, but probably not legal.
The main thing it that you now know that you are VB12 deficient, presumably through your diet.
The most important thing is to get your levels up and get them to stay up. You would almost certainly have got worse. So now you should aim to get way above 300 pmol/L and keep it up. Being low you will probably have done considerable sub-clinical damage to your nerves (particularly in the brain) and you have to get your levels up to repair this damage. Next thing is to spread the word and help educate those around you. Hopefully then the medical profession will listen. Our calculation suggests that up to 20% of the population is sub-clinically deficient. That is without the contribution of the MTHFR population. Despite this people are still taking ant-acids, products for GORD, metformin and similar drugs. B12 levels are not routinely checke in women before, during and after pregnancy, despite the evidence that VB12 deficiency is as bad for the fetus as folate deficiency.
Trace V says
it has been very informative reading all these comments.. i would like to know if anyone can suggest something to do if the b12 level is low 79 and there is an allergy to b12 (cobolt)… i once had a b12 shot and had such a bad allergic reaction. i knew i was allergic but needed some relief from the symptoms. thanks.
Greg says
Hi to all, I don’t know if you know anyone with dementia or Alzheimer’s disease, but you probably know of the association between low VB12 levels and dementia and AD. I thought that you might be interested in this study:
Ikeda T,Yamamoto K,Takahashi K,Kaku Y,Uchiyama M,Sugiyama K,Yamada M. Treatment of Alzheimer-type dementia with intravenous mecobalamin. Clin Ther. 1992 May-Jun;14(3):426-37.
The efficacy of intravenous mecobalamin in the treatment of Alzheimer-type dementia was evaluated in ten patients using several rating scales. Vitamin B12 levels and unsaturated binding capacities were also measured and compared to the evaluated intellectual function scores. Mecobalamin was shown to improve intellectual functions, such as memory, emotional functions, and communication with other people. Improvements in cognitive functions were relatively constant when the vitamin B12 levels in the cerebrospinal fluid were high. Improvements in communication functions were seen when a certain level of vitamin B12 was maintained for a longer period. There were no side effects attributable to mecobalamin. We conclude that mecobalamin is a safe and effective treatment for psychiatric disorders in patients with Alzheimer-type dementia
You must note that they needed to give high doses repeatedly over time, so you would need either injections or the topical material
ApotheCarey says
This study is quite old: Has there been follow up? I have been thinking my mother, age 90, who gets B12 shots once a month, should have them more often. If I were armed with more recent studies, I could present them to her doc. She is just getting some dementia. My mother in law has advanced alzheimer’s and is in a memory care unit, and I’d love to present her doctor with some studies also, if they confirm the results of this one from 22 years ago. Thank you!
Greg says
Hi to all,
Just thought you might be interested in a new study on vitamin B12 levels in mothers and babies following the birth of the new-born. Cobalamin and haptocorrin in human milk and cobalamin-related
variables in mother and child: a 9-mo longitudinal study1–3
Eva Greibe, Dorte L Lildballe, Su´sanna Streym, Peter Vestergaard, Lars Rejnmark, Leif Mosekilde, and Ebba Nexo.
Basically it shows that during the breast feeding period both the mother and babies Cbl levels drop quite dramatically. This follows another study by the same group, in which they showed a big drop in Cbl levels in the mother during pregnancy. Now somehow Eva Greibe’s group of mothers were all what I would call sufficient in Cbl. The situation is much worse in those that have sub-clinical deficiency. Whilst the study is yet to be done, it is quite possible that post-natal depression can be due to this big drop in Cbl levels in the mums. For some reason that escapes me, generally post-natally depressed mums are not tested. Just thought the group would be interested.
Amy says
What I have not seen mentioned is the condition of MTHFR acronym for methylenetetrahydrofolate reductase , which may be the actual root cause for the B12 deficiencies. This is a genetic condition that is rather common (some stats show upwards of 30% of the population), which causes breakdowns in the pathways that allow for adequate absorption of many of the B vitamins.. mainly folic acid and B12. B6 is also affected. There is a saying that MTHFR is not a problem until it is a big problem and many people and doctors have never heard of it. The Big problems usually represent via blood clots, fetal death and thrombosis. It is very important that people with MTHFR take the active form of vitamins including methyll forms of folic acid and B12. It is important to know the root cause as this is a genetic condition that can have life altering problems with a very easy fix (i.e. regulating folic intake and B12 intake.) Women, this is very important if you are of child bearing age and are thinking about getting pregnant. You must be on a methylfolate for more than 3 months at very high does (usually given via a prescription). I found out the hard way loosing two children that I have this condition, which is heartbreaking but a gift to the rest of my family who all have been tested. Such an easy fix and so tragic that it is on so few doctor’s radar screens. People suffering from anxiety, depression, joint and nerve pain and a multitude of other issues could in fact have MTHFR as a root cause.
Finndian says
Its been mentioned several times here however another time for the new readers never hurts. My big sign of low B12 is hoarse sounding voice and CANKER SORES. Several studies show that B12 helps clear up recurrent canker sores.
I suffered all my life with horrible cankers… found I had the MTHFR polymorphism, cured the deficiency with the methyl forms of both B12 and folate and POOF… gone. Haven’t had one canker sore in 8 years.
Eve says
Do you know where I can find hydroxycobalamin B12? I cannot tolerate methylB12, am on GAPS and now expecting – so I don’t want a huge dose either. Any ideas? Thanks!
Lynn_M says
Rose,
Greg’s company is in Australia, so shipping from there should be feasible for you. Just waiting for the announcement of his website.
Rose says
Lynn-M! That’s great news! Thanks so much!
Greg says
Hi to all,
Just to let you know that the mixed Ado/MeCb topical oil product is now being sold by TransdermOil.
Link is http://www.transdermoil.com The product is in a light protected pump bottle and delivers ~2.5 mg/dose. It must be rubbed in well into warm dry skin to work and if done so properly should “vanish” into the skin. BE aware, the product is VERY RED. Ratio of Ado:MeCbl is 3:1, which is roughly the ratio in the body.
Lynn_M says
Rose,
I too have a problem with sublingual mB12. The sublinguals use citric acid because acid is needed for absorption of the B12. I have thin enamel and find that the citric acid is etching my teeth.
I don’t know how effective the patches are. However, as Greg mentioned, there soon will be another application choice for getting methylcobalamin. It is the topical oil his company has developed and that will be on the market very soon. I have been using his adenosylcobalamin topical oil for the last couple months, and they now have a methylcobalamin/adenosylcobalamin product as well. I think now they’re just waiting to get the website up and marketing details finalized before the products are available to the public. The topical oil comes in a spray bottle that keeps it well protected from light and makes it easy to apply.
I am eagerly awaiting for that product to become available so I can give my teeth a break.
Rose says
Amber….Thanks for the info. I’ll look on iHerb.
Lynn_M….The oil sounds like a good way of getting B12 but I live in NZ so don’t know if it will be available here or shipped this far. Will just have to wait and see.
Thanks for the info, both of you!
🙂
Rose says
Can anybody tell me if the B12 patch is as effective as sublingual methylcobalamin. I am in a difficult situation as the formula of the sublingual B12 drops I have been taking has been changed and now contains citric acid as a preservative. I realize that not much of this gets into the system, but enough to irritate the living daylights out of my pancreas. The B12 box of patches available has only 8 patches which says it’s a 1 to 2 months supply of methylcobalamin. Would that be enough, or at least be better than nothing? Cost is a major for me. There are sublingual tablets but they all contain additives that I can’t tolerate either so at this stage the patches seem my only option. My doctor still refuses to believe that I have a B12 problem, even though my tongue burns and my RBC is borderline…still.
Any help would be appreciated.
Thank-you
Amber says
I don’t know about the patches, but the methylcobalamin I use has only cellulose as an additive. It’s Doctors Best Fully Active B12, and the price is really cheap on iherb. It comes as a powder in a capsule. I empty the capsule between my lip and lower teeth, and treat it like a sublingual. It’s been working great for me.
Rose says
Amber…..How can you tell this product is working for you? I’m not sure it would absorb if it’s a powder. Do you have symptoms that go away taking this product, or do you have blood tests that show your levels are rising?
Thanks
Joe says
Thanks Greg! This is very enlightening. I won’t be seeing the doc again for another 6 months. In the interim, I will try a topical patch. Found some on Amazon, and I am so exited to try it. 🙂
http://www.amazon.com/Advanced-Energy-Topical-Patch-Supply/dp/B003AORVEG
Anything else I should take/change?
Thanks again,
Joe
Greg says
Hi Joe,
You are quick to find the patch, but I am not sure it will deliver as much material as you need. There is a topical oil, which is just about to be released onto the market. It will deliver a much higher dose of VB12 and contains both Ado and MeCbl. I will post the link when it is out. The trial product has been used by a few people in the discussion as well as many others who are not on the post. It appears to work very well.
If you have further questions you can contact me directly [email protected] .
Hopefully we can help you. Thanks for the link on the patch.
Cheers,
Greg
Joe says
Greg,
Just got the results of my recent lab tests. My “Methylmalonic Acid, Serum” is 120.
Joe
Joe says
I have Transcobalamin Deficiency. So, not matter how much B12 I take, I can never absorb enough to survive. My Mom died from this, and my siblings and other family members have the same thing. Isn’t there some way to get the transcobalamin that we need? Injections? Transfusions?
Greg says
Hi Joe,.
You certainly have a curious condition. They have cloned TCII and determined the crystal structure, but I don’t think it is made under GMP conditions for injection or transdermal delivery. Theoretically there may be a work around the condition which doesn’t involve VB12.
Firstly, you technically need both Ado and MeCbl. Now the AdoCbl is mainly needed for energy production, but only for some carbon sources, which mainly are odd chain fatty acids, and some of the amino acids. You don’t need it for metabolism of sugar for energy, most fats, and many amino acids. This would mean if you were to seriously control your diet you could work around it to a certain extent.
Secondly, you need methylcobalamin for methyl-transfer reactions to load up S-adenosylmethione (SAM) from 5MTHF, and to cycle it back to THF (tetrahydrofolate). Now if you keep taking folate, but NOT 5MTHF, you should still be able to do the DNA synthesis, you will gradually accumulate 5MTHF, which will increase in serum and then be excreted. So your problem now is making SAM. Have you considered getting shots of SAM? You would then be able to use SAM for all the other processes that you need it for, and if you take high enough levels of vitamin 6, you should be able to keep your homocysteine levels down and your glutathione levels up.
I don’t know of anyone who has tried this, but maybe there is someone “listening” to our conversation that may have.
Joe says
Hi Greg,
Thank you so much, for the information. I am taking Cerefolin NAC, B-100 (2 tablets), Cyancobalamin Liquid (1500mcg), and Acetyl-L Carnitine, D3 (2000iu), Androgel, and Digestive Enzymes. My digestion is a farce. Every time I eat, I retain large amounts of fluid. Fats and proteins make it worse. My legs burn so bad, and eating always makes the burning worse. The Cerefolin NAC has helped my anxiety, some. My cognitive function is declining, and my doctor said that he is concerned about my mitochondria. My homocysteine levels are high and rising. I just started the Acetyl-L Carnitine, and it has helped with my leg pain at night (a little, but still enough to tell the difference). So, I just need to get that balance of supplements and diet that minimize my symptoms and keep my illness from progressing so quickly. Any suggestions, based on this info? I am desperate to try anything.
Finndian says
Joe, if you risk dying of B12 deficiency ultimately, why are you taking only 1500 mcg cyancobalamin? Is there a reason for the low dose and the inferior type? I don’t have your condition and I take 5000mcg of more easily absorbed methylcobalamin.
Is your doctor not treating this condition aggressively? Is he using methylcobalamin for the injections? How much and how often?
Joe says
I forgot to mention that I am doing 1000mcg injections of cyancobalamin, every other week. The Cerefolin NAC contains L-methylfolate 5.6mg, Methylcobalamin 2mg, and N-acetylcysteine 600mg, So, I’m taking 3500mcg per day (not including the bi-weekly shots). Of course, it doesn’t matter how much I take, because my body lacks enough protein (transcobalamin) to transport the B12. I am always hopeful that a solution will come along,
Greg says
Hi Joe,
Thanks for the information, it helps to sort out what is going on.
Regarding the bioavailability of various oral supplements, there is no conclusive evidence that MeCbl is taken up any better than Ado or CNCbl, and in fact 5 mg dose of MeCbl is around 1000 times the uptake capacity for VB12, so it is in vast excess. One could argue though that you would need AdoCbl as well as MeCbl. If you are MeCbl deficient, I don’t why anyone would prescribe 5-methylfolate instead of folate. 5-methylfolate is at the end of the folate cycle and builds up as an end product. It can’t go anywhere without MeCbl and so is not a useful analogue if you are MeCbl deficient. It cannot be converted back to Tetrahydrofolate without MeCbl, which you don’t have.
It is curious about your increasing homocysteine levels as it would appear that you have enough/excess methionine for your needs and that you must be making SAM. Without MeCbl you can theoretically “move” Hcy to Cystathione, then cysteine with excess vitamin B6, which you may not be absorbing. I cannot follow the logic in taking N-acetylcysteine, as it will stop Hcy consumption/removal. i would be interested in hearing the logic if anyone has it.
As for the mitochrondria, carnitine normally is formed from breakdown/conversion of trimethyllysine, and is used in fat metabolism to form energy from fat breakdown. If you don’t take your calories as fat you don’t need it. Thus you don’t need it for entering the Kreb’s cycle if you use sugars or amino acids as energy sources.
As for loading your cells with VB12 (of either type) without the transporter, here you need to get the circulating concentration so high that it is non-specifically taken up from the circulation. This is sort of the theory behind the extra high dose oral supplementation idea. I don’t see that this is technically going to be possible from oral supplementation. The maximum absorbed dose is around 1% of that adminsitered (unless you have a transporter), so even a 5000 ug dose will only get 50 ug in. As this will not be on a VB12 transporter this will be lost so quickly from the circulation that it will barely have an effect. So yes injections or topical B12 are the way to go. These give a much higher bioavailability and so enhance your chances of uptake. The topical route will provide longer release with time, whilst the injectable route will give you a higher peak, but drop off very rapidly.
I hope this is helpful.
Cheers.
Mary says
Wouldn’t his doc prescribe 5-methylfolate if he has the MTHFR genetic defect which prevents one from converting folate to 5-methylfolate?
Greg says
Hi Mary,
An interesting thought, and yes it depends upon what the deficiency/defect is.
Thus, if you have the MTHFR genetic defect, you cannot convert 5,10-methylenetetrahydrofolate (CH2-THF) to 5-methyl-tetrahydrofolate (CH3-THF, MTHF)., and hence your folate can’t cycle around and so you effectively cannot re-use folate. So if you give folate or MTHF, it should not make much of a difference, IF you have enough VB12. If you don’t have enough VB12, then you can’t now convert MTHF to THF, and so the 5MTHF would be wasted and would just appear as higher folate levels in serum, and you would still effectively be folate deficient inside the cell, although your serum levels would say you are not deficient.
Now if we look at the VB12 side of what is going on. In the conversion of MTHF to THF, hydroxocobalamin (OH-Cbl) accepts the methyl group from the MTHF and is converted to Methylvitamin B12 (MeCbl, methylcobalamin). So theoretically you would give OH-Cbl plus MTHF. In this scenario 5,10-methylenetetrahydrofolate (CH2-THF) could build up in the cell due to the mutation, except that thymidilate synthase converts it back to Dihydrofolate, and the folate cycle commences again..
Now if we look at the homocysteine to methionine conversion, here the homocysteine is converted to methionine by the addition of the methylgroup from MeCbl, which becomes OH-Cbl. In this scenario you could just give folate plus methylcobalamin. (In a nomral person the OH-Cbl would be converted back to MeCbl by the process described above).Now all of these reactions are subject to “feed-back” control, and it is hard to determine what effect a build up of any of the reaction products will have, which is why there is such a huge variation in effect depending upon how much VB12, folate and methionine is in the diet. It gets even more complicated when one looks at what the effect of increased vitamin B6 has on homocysteine removal, or the effect that thyroxin and vitamin B2 have on the folate cycle. So it gives you an idea about why your doctors might not be up to speed on the deficiency, there is quite a lot of biochemistry and organic chemistry that is involved, and they don’t actually study this.
karine says
I just got tested and it shows 522 pg/ml. Even being in the normal range, I still want to supplement. Are there any consequences for that? I have mild symptoms like fatigue, and I am a vegetarian, almost vegan for 10 years. Thanks!
Greg says
Hi Karine,
If you still have mild symptoms, I would still keep supplementing, particularly when you consider the long term consequences of being even mildly low (see discussion above). It is hard to tell without seeing the composition of your vegan diet, but you could also be marginally low in iron, zinc and calcium. Both zinc and iron are needed for energy, and calcium obviously for your bones. You could also be low in the other B group vitamins, but normally if you are on a good “grain” diet you can make up for it. As for the 522 pg/ml, remember that is only a serum measurement. Several studies have shown that serum levels, particularly after high dose supplementation do not reflect in increased tissue levels of VB12. Hence, if you were low (gradually decreasing over 10 years of vegan diet) you may need to supplement for at least that long.
Cynthia says
Hi I have just seen my doctor to see if she would consider prescribing me more B12 injections as I am still very tired. She said that the fatigue is probably due to the folate deficiency, and that once those levels are up I would feel better.
Gregg, I repeated the advice you gave me to her, and she was not interested and simply said that if I was not happy with her diagnosis I was free to go to another doctor! I live in Ireland and my family and I have been going to this practice for 40 years so it would be very difficult to go elsewhere.
She has asked me to continue taking the folic acid for 12 weeks and then I will have another blood test. She assures me that I should see a change in my energy levels soon.
My last blood test two weeks ago, after 5 B12 shots was;
B12 757 range 189-1162
Folic acid 2.6 range 2.7 – 20
Potassium4.4 range 3.5 – 5.0
Urea 3.5 range 2.5-6.7
WBC 4.3 range 4 – 11
RBC 4.2 range 3.8 – 5.2
Haemoglobin 13.4 range 11.5 – 16.5
haematocrit 0.39 range 0.37 – 0.47
MCV 92.6 range 80 – 100
MCH 32 range 27 – 32
MCHC 34.4 range 32 – 37
Platelets 195 range 150 – 400
Neut 2.01 range 2.0 – 7.5
lymph 1.98 range 1 – 3.5
Monocytes 0.24 range 0.2 – 1.0
Eosinophils 0.08 range 0.04 – 0.5
Basophils 0.02 range 0 – 0.2
Sorry for the long post. What changes do you think I should see in my next blood test if I continue to take the folic acid and no B12 shots.
Also, how long can you be B12 deficient before you see a decline in your health?
Thank you for any replies it is much appreciated.
Cynthia
Greg says
Hi Cynthia,
Your questions certainly have prompted me to do a fair bit of literature searching, through which I may have come up with a potential answer. Your bloods look pretty good except that now your folate level is a bit low, which may be due to increased intracellular use. Also your MCH is a little high in other types of anaemia where the red blood cells are enlarged (for example, as a result of folic acid or vitamin B12 deficiency).
Now there is a very common problem, particularly in women, which mimics the symptoms of vitamin B12 deficiency, and that is hypothyroidism, which is also curiously associated with vitamin B12 deficiency and anemia. In fact there appears to be an abnormally high percentage of people who are VB12 deficient who have hypothyroidism. The symptoms of hypothyroidism are as follows:
• Fatigue
• Weakness
• Weight gain or increased difficulty losing weight
• Coarse, dry hair
• Dry, rough pale skin
• Hair loss
• Cold intolerance (you can’t tolerate cold temperatures like those around you)
• Muscle cramps and frequent muscle aches
• Constipation
• Depression
• Irritability
• Memory loss
• Abnormal menstrual cycles
• Decreased libido
You will see that many of them are similar to VB12 deficiency, which may correlate with the co-incidental hypothyroidism/vitamin B12 deficiency. So I would go and get your TSH levels checked and your T4 and T3 levels.
Thus if you now have hypothyroidism, and you have supplemented with VB12, you can’t actually use it effectively as you don’t have normal T4/T3.
If you want references for your doctor, contact me and I will send them on.
Best wishes,
Greg
Rose says
Hi Cynthia…..Pardon me for butting in here, but were you aware that the Irish are particularly prone to gluten intolerance which leads to thyroid deficiency and B12 malabsorption plus about 300 other medical conditions? I just happen to know all this because I am of Irish decent and have a myrial of problems due to the late discovery that I am gluten intolerant. There are no obvious symptoms of gluten intolerance except that it presents iyself as a million other symptoms and conditions. For me in was chronic fatigue that finally brought about the discovery that gluten was the problem. After 2 days on a GF diet, the chronic fatigue had gone completely.
One other thing is that doctors by and large will say that a TSH level of up to 4 or 5 is ‘normal’ when in fact it isn’t. In USA in particular it is widely considered that 2.5 should be the top level of normal.
The Celiac Disease Center of the University of Chicago states that there are over 300 symptons and conditions linked to gluten intolerance.
Cheers
c says
Hi Rose, thanks for the input. I will read up on Gluten Intolerance and hypothyroidism. Unfortunately I don’t know much about either and my brain fog and concentration is so poor at the moment I am finding it difficult to take anything in!
My last TSH result from my blood test 3 months ago was; TSH 1.15 range 0.05 – 4.94 and my glucose level was 4.8 range 3.9 – 5.8.
Since starting my folic acid I have been feeling terrible. At night when i’m resting or in my bed I am getting terrible palpitations and twitches in my neck and an ache in my left back shoulder. Now maybe I just pulled a muscle and that’s why i’m getting the twitch I’m not sure. The palpitations are keeping me awake so I am extra fatigued. Also, the lump feeling in my throat is consistently there. I don’t have trouble swallowing food but it is difficult to swallow my saliva and it feels like im being choked. I’ve made an appointment to see a different doctor next week.
Thanks all,
Cynthia
Rose says
Cynthia…..You’re thyroid reading sounds ok to me.
🙂
Cynthia says
Hi this is a very informative site, unfortunately I haven’t had time to read all of it.
My blood test last march showed a B12 level of 200. I was and still am very fatigued, but not may other symptoms. I get restless legs and burning feet when i’m trying to get to sleep, am cold most of the time and slight palpitations but if I hadn’t read about B12 deficiency I would have paid much attention to all this. I got 5 B12 injections, (don’t know how much or what they were called), one each week for 5 weeks. They took my bloods again a month later and the Doctor rang a couple of days ago and asked me to come in tomorrow as she said my Folate level is now too low. It was at 8.7 in March and now its at 2.2. I forgot to ask what my B12 is at now.
My question is could the B12 shots have cause my Folate levels to drop? Also, this is all new to me and a bit confusing could anyone give me advise on what questions I should ask the doctor and what would be the next step for me.
Any advise would be gratefully appreciated as there seems to be so much differing opinions on B12 and Folate levels.
Thanks
Amber says
Hi Cynthia,
B12 and Folate work together in the same metabolic pathway. You’ll probably want to supplement methylfolate along with your methylB12. Also, low potassium and low magnesium can cause the restless legs and other symptoms you describe. I’m not a doctor, but from the comments and other B12 forums, it seems all these nutrients are often low together and all need to be looked into and probably supplemented as you recover. I personally feel so much better on a methylB12, methylfolate, and supporting nutrients protocol. Night and day improvement in my health. Unless you have a naturopath or alternative minded doctor, many are not educated about the need for B12, the ways it can be supplemented, and the needed supporting nutrients.
Greg says
Hi Cynthia,
It is quite important to know which type of VB12 you were shot up with.
There are two active forms in the body, methylVB12, which works in concert with folate and is very important for proper functioning neurones and for production of red blood cells. The other form is adenosylcobalamin, which is very important for energy production in the cellular power-houses (mitochondria). If you are deficient in methylVB12, your apparent levels of folate may be artificially higher in serum, such that once you are given the VB12 shot, the folate is then taken up and used by cells, so that the serum folate levels drop significantly. It looks like that is what has happened to you, which will make you slightly folate deficient, and will mean that you either need to eat more leafy green fresh vegetables, or you need folate supplements.
I have a web-site with much information on vitamin B12 deficiency, although it does not have information as yet on the link up with folate. I am working on that and hopefully can add it soon.
Check out http://vitaminb12deficiency.net.au/
The good news is that you have recognized the deficiency. If you are still very tired after those shots, you may need adenosylcobalamin to directly drive the energy system, or mixed B group vitamins, plus zinc and Q10. Vitamins B1, B2, B3, B5 and B12 are all directly involved in the energy production, so too is zinc and Q10, although most people make enough Q10.
You also need iron for energy, both to carry oxygen in your red blood cells and in the electron transport chain. I presume though that your doctor would have checked this.
All this depends on why you are VB12 deficient, dietary, medication use, or genetic, or even having recently been pregnant..
heidi says
Make sure you take methylfolate, not folic acid. Chris Kresser wrote a great article about the difference which you can find by searching this site at the bottom of the page. Whether or not you continue with B12 shots you can buy methylB12 tablets to use sublingually every day, that way you are getting the B12 you need daily, not just once a week or once a month. You might also want to take a B complex daily, one without folic acid. Once you start folate along with B12, you may need to take extra potassium. keep reading!
Cynthia says
Hi Guys, thanks for all your replies, they have helped a lot more than my doctor did! I asked her could the B12 shots have brought down the Folate level and she said she “didn’t know”.
Greg I am not sure which shots I got, but I will find out. But what you say above would explain why my folate levels dropped which is nice to know, thanks.
Heidi, my doctor prescribed a folic acid tab. 5 mg, but I will get the methylfolate and take it instead. Thanks for the tip on the potassium. My levels there are good at the moment so I don’t want them dropping too. There is so much to read and learn on this subject!
My B12 levels are now back up to 700 and the doctor was happy with this, so hopefully I’ll get my folate levels up and everything will stay up! I don’t know for sure why my levels dropped, more than likely due to yo yo dieting although I did feel I was eating healthfully, but maybe not good enough. I suppose I’ll find out in 3 months when I go back for my next blood test.
Just one more question, would a deficiency in B12 and folate affect you white and red blood counts?
Thanks all
Greg says
Hi Cynthia,
I am not surprised that your doctor did not know about the folate levels, for some reason it is very poorly understood by most medicos, although the interaction is really quite complex.
Both folate, vitamin B6 and vitamin B12 are essential for all cell division and also for properly folding proteins synthesized in the body. Thus if you are deficient in either of them you have a general problem with cell division and protein synthesis. Thus rapidly dividing cells such as replacement of white and red blood cells will be affected in either deficiency. These cells are very easy to measure by blood counts. What is more of a worry are the cells that you cannot measure easily. Thus, the cells that line your intestine are also rapidly replaced, but you can’t easily see that, BUT it will lead to problems with absorption of vitamins such as vitamin B12 and folate, which makes the problem worse.
What I would urge you to do is to make sure that you continue with the vitamin B12 supplementation, as your transient increase in serum vitamin B12 generally does not last, particularly if you have not found out why.
finndian says
It is poorly understood by medics because they receive virtually no training in nutrition in medical school. Tingling feet means tight shoes to most doctors. Only California in recent legislation requires future doctors receive some training in nutrition in medical school.
heidi says
Keep in mind that the blood tests for both B12 and folate are only measuring the fact that you are now supplementing. A high reading at this point does NOT mean you should stop B12 or folate, it only means the supplements are in your bloodstream. IMO, a waste of money.
Greg says
Heidi,
I totally agree. The problem with taking supplements in the initial phase is that although the blood levels are up, it does not mean the stores are replenished. This is a major problem with vitamin B12. Thus even those people who take regular injections of vitamin B12 (every 4-6 weeks) still have to keep taking them. This in itself tells you that the stores of VB12 are not replenished.
If you look at those that go to a vegan diet, it can take up to 5 years to become deficient, if they started with good levels. This is because the amount that can be taken into the tissues and stored at any one time is very low as the VB12 has to be on a special transport protein. A bit like trying to fill a swimming pool with a thimble. It is going to take a very long time, particularly if the pool has a leak in it (ie the VB12 is being continuously used). This fact is generally not understood by those who are deficient. Just as it takes up to 5 years for the vegans to become deficient, it may take at least this long to fully recharge the system, IF you continuously keep up a constant supply of excess VB12. It is our belief that once you are even marginally deficient you are on continual supplementation for the rest of your life. This is particularly relevant if you look at the other associated problems with deficiency, such as dementia, MS, AD, CVD, etc, peripheral neuropathy, macular degeneration, optic neuropathy. Measured VB12 deficiency is an early warning sign, which should be headed, but generally is not. The biggest problem with this is that even high dose oral supplementation does not fully recharge the system, although it may stop the situation getting worse. If you have any problems believing this just go and visit the advanced dementia units in old peoples homes. This is a situation you definitely want to avoid! Hopefully our work can prevent this.
Hope Sanford says
I’m a 61 yr old vegetarian and inadvertently, mostly vegan. I have been thin all my life; when my husband got ill & died 9 yrs ago, I got thinner- 5’7, 106 lbs. I’ve been SO tired for the past 7 years and kept being told 1)You should increase the dose of antidepressant and/or 2)Everyone in America is tired. Your CBC is normal. A month ago a new doc I saw for something totally unrelated suggested trying a B12 injection, as it is cheap. I did not expect any changes as I’ve been taking it sublingually with no results. It makes a BIG difference. I feel WAY better. I am quite surprised and grateful.
robsct says
Hope, I had a very similar experience and felt like I had more energy and muscle strength after starting B12 shots. I had to increase my intake of Potassium to about 2400 mg a day as my body was using more potassium because it was no longer starved for B12. I still have problems but the B12 shots helped a lot.
Gregory says
Dear Hope,
I am not at all surprised at the difference between the shots and the sublingual. The sublingual is not really a very good mode of delivery, and there is no conclusive evidence that shows it is better than high dose tablets. It is based upon an incorrect premise that there are blood vessels near the surface of the underside of the tongue and so the material should go into them. Well that is the problem, it doesn’t, and I don’t know of any study that has shown it does. In the intestine you have a massive area for uptake of vitamin B12, much, much bigger than under the tongue. Best estimates for 1 mg sublingual tablet, 1 mg sublingual spray or 1 mg oral tablet is that up to 10 ug gets in. If you are deficient, you are down somewhere between 10-50 mg, or around 1,000 to 50,000 times more than you can aborb by either of the 3 methods. That is why the shots are so much better. It is also why we are working on a transdermal oil that gets around the same amount as the shots.
heidi says
I started to get excellent results from sublingual B12 when I began to put the tablet between my cheek and gum and hold it there for 1-2 hours. It is absorbed slowly, chewing it up doesn’t work. If you continue with B12 shots, make sure you are getting the active form, methylcobalamin, not the cheap imitation stuff.
I also use adenosylcobalamin, the other active form of b12, marketed as dibencozide, with great results.
sue says
HI, everyone. Just wanted to say how we underestimate Vitamin B12. My son has ASpergers syndrome. Last winter, out of the blue, he had Total Bell’s Palsy. It took him 6 months for the cheek to move, and 12 months for the nerve totally recuperate, even though his left side of face is still drooping. Everyone(including my son’s father, who is a doctor) were saying that Bell’s palsy comes only once. Well, guess what? 4 weeks ago, my son ‘s right side of the face was affected with nasty Bell’s palsy again!! His neurologist gave him anti viral and steroid. When my son came back(he is 21 years old, he was visiting his father during 2nd Bell’s occurrence) , I read so much about B12 methylcobalamine. I immediately gave him injections every other day. BELIEVE ME, AFTER 1ST INJECTION, HIS LIP STARTED MOVING. AFTER ONE WEEK, HIS FACE HAS COMPLETELY HEALED, MOVING, SMILING!!!!! MY SON’S FATHER, WHO IS A DOCTOR, SAID THAT THIS WAS JUST A COINCIDENCE . i give my son injections 1mg every other day. Hi stopped having twitches(he always had them), he is smiling and moving his lips.
Mary says
Wow! Where did you manage to get the methylcobalamin injections?
Finndian says
Sue, I’d read all about Bell’s palsy being helped by B12 injections so when I developed a paralyzed vocal cord I asked the neurologist about B12 shots. I brought in the studies about B12 and Bells palsy and he scoffed and refused to give me B12. I explained that I hadn’t eaten red meat in 25 years and previously had numerous unexplained nerve problems in my back and arms. He instead wanted to get me into surgery to inject my vocal cord to plump it up with restalyne. This simple procedure was billed to my insurance at $22,000! I stupidly let him do it.
I went to another doctor who prescribed the methylcobalamin and showed me how to inject it myself. The original neurologist commented that I was the fastest he’d ever seen someone recover from idiopathic vocal cord paralysis… I never told him I was injecting B12 weekly. Vocal cord paralysis has a 30% or more likelihood of becoming permanent as time wears on… no way in hell I wasn’t going to start injecting B12 with or without his consent.
I must have been B12 deficient for years since after the months of injecting not only did my nerve conditions disappear but so did my life long problem with canker sores. At least one study links chronic canker sores with B12 deficiency. I also show antibodies to gluten which certainly will interfere with my own production of b12 in my gut.
Autism spectrum disorders like your sons often cause B-vitamin deficiency as well as Magnesium… the same deficiencies that people with food allergies develop. I can see why some doctors immediately suspected diet with the explosion of autism happening.
Brandon Frye says
Thank you for your article. It is important to keep people informed of the risks involved with a change in diet. I decided to write an article to help people who are transitioning into a plant-based diet.
http://www.forkstofeet.com/2013/04/vitamin-b12-for-vegans.html
Ann says
Did you bother to read the article? If so you would see that nutritional yeast does not contain B12, but B12 analogues that can mask a B12 deficiency. I think you are using Chris’ article to try and get traffic to your blog post.
Greg says
Hi to all, and particularly those who are suffering VB12 deficiency and trying to deal with it or may be about to bring it on by switching away from meat, there is a very salient article on the effect of VB12 deficiency on the nervous system. Reading it, I wouldn’t give up meat, or if I did I would be taking megadose oral or transdermal B12 all the time. You don’t want to go down the irreversible road to deficiency.
See Lachner C, Steinle NI, Regenold WT. The neuropsychiatry of vitamin B12 deficiency in elderly patients. J Neuropsychiatry Clin Neurosci. 2012 Winter;24(1):5-15. doi: 10.1176/appi.neuropsych.11020052
You can either get a copy of the article from the author who seems a lovely person, or I can send you one if you want.
[email protected]
Jinny says
Hi Greg,
I have been following the comments to this article almost since the beginning. I have noticed that there are a lot of people who comment on this article who eat meat and still have a deficiency with B12. It is more about being able to absorb the B12, which seems to be a major issue for a lot of people. That is why supplementing with a sublingual form of B12 is so important, regardless of ones diet. I used Enzymatic Therapy B12 Infusion according to the protocol of a guy on here named Fredd, who healed himself from a wheelchair with a very specific protocol.
My husband and I have been vegan’s for 8 years. I have a B12 deficiency and he does not. I keep everything in check following some of Fredd’s protocol and my husband takes B12 here and there, but has absolutely no symptoms of any deficiencies. Since I started Fredd’s protocol I have no symptoms and a consistent flow of energy.
Greg says
Hi Jinny,
Well I am certianly glad that you have no overt sytmptoms of deficiency. It is of course very hard to say without seeing your MMA and Hcy levels, whether you have achieved normal levels of VB12.. Sub-clinical deficiency is very insidious, and energy levels may not be that predictive. If you see all of the possible sequelae of sub-clinical deficiency, I would want to make sure your VB12 levels were well over 300 pmol/L, or 400 pg/ml. Similarly, whilst you may have elevated your levels in serum, the real worry is the CNS, where so many of the long term problems occur, dementia, neuritis, Alzheimer’s, PD, schizophrenia, etc. Similarly if your HCY levels are not below 10-11 then your risk of CVD is so much higher, which is now touted as an unexpected sequelae of a vegetarian life style, but it is still controversial, particularly in the non-Science literature.
You are right about absorption, in that many cases of deficiency also come from taking ant-acids, metformin use, or having gastritis, bowel resections, bacterial overgrowth, H.pylori, etc,.
In these people oral, or sublingual, will not be anywhere near as effective as transdermal of injected VB12 as they don’t have normal uptake mechanisms for VB12. If your intestine is normal then sub-lingual (which sounds so much harder and less pleasant than topical) has the effect of slow release of material, which helps in uptake and gets more VB12 onto haptocorrin, although it is only the same as chewing your food as far as saliva goes. As for the amount of VB12 you get in from meat, remember it is not all meat. Chicken has VB12 in it, but you would have to eat 2 kg (4 lbs) per day to get adequate. If you did do that you would be so large that VB12 deficiency may only be a small part of your problems. Good to keep these discussions going. Cheers.
Aakash says
Guys i need a small advice from you all who have experienced the vitamin b12 def. 3 months back on a random morning i woke up with dizziness and weakness. i thought this could be bcos of less sleep so ignored it but on the same day i started feeling extreme fatigue, heavy eyes, severe leg pain and tingling and pinch feeling in legs. i was full of sleep as if i havent slept for weeks. i had mild upset stomach. i made a blood test of vitamin d and vitamin d 12 and my levels for vitamin d was 10 and for vitamin b12 was 256 which my gp told was a deficiency and bcoz of this i was suffering severe weakness and chronic fatigue. i almost used to sleep for 14 hours in a day. this all went for almost 2 months. my gp gave me some injections with tablets for vit d and b12. now i feel normal but not totally fine. after 2 months i was perfectly fine for a week but again this weakness came back. i m jus worried about this as i was always fit and never had any health issues in my life. again i get weak and my leg pain starts and i end up sleeping for an hour or so.
i would be very greatful to u all if u can jus help me and give ur advice on this.. Thank You 🙂
Amber says
Hi Aakash,
In addition to B12, please make sure you are getting enough potassium and magnesium, as it can cause these sorts of issues. Magnesium especially helped me with my sleep and tingly legs problem. Do a little googling to see which magnesium is best to take, as there are different forms.
Aakash says
Thanks Amber,
i have been prescribed with some medicines and i am having that but the problem is that when i stopped it for a while these things again started but it was mild as compared to that it was in the start. i mean are these symptoms normal in the b12 deficiency bcoz im worried. like sleeping for long time, always weak and sleepy even after sleeping for 12-14 hrs. and ya now recently i have been started getting dry skin as well. may be this is bcoz of the desert climate as i live in the middle east and summer has started here but then also was just worried that are all these things related to def of b12 and D.
Amber says
I’m a little unclear. You were taking vit. D and B12 tablets, it was helping, but then you stopped taking it? Or it was some other medicine you were taking?
Toma says
The study in the article is from 2003, and so I had a look for a more recent one.
Vitamin B12 and vegetarian diets. Carol L Zeuschner, Bevan D Hokin, Kate A Marsh, Angela V Saunders, Michelle A Reid and Melinda R Ramsay. https://www.mja.com.au/open/2012/1/2/vitamin-b12-and-vegetarian-diets
Mickey says
This link is not working anymore, this one has the same information http://blog.meddysaid.com/2017/07/15/vitamin-b12-vegetarian-diets/
Hope it was useful 🙂
julie says
Hello, My blood tests came back HCt 36, HGB 11.9 RBC 4.12 Ferritin6.8 and B12 228.Could my B12 level which is still the normal range be the cause of my symptoms, tiredness not affected by lots of sleep,breathlessness, pins and needles in legs and palms of hands,a strange feeling of being punch drunk, twitchy legs, brain fog,and general feeling under the weather? All my other blood levels seem normal including folic acid. I would really appreciate some advice, I am usually a very active and sporty year 40 year old woman, and over the last 6 months have steadily dropped all the activities I love through lack of energy and exhaustion. My forgetfullness and lack of mental clarity is frightening me and I sometimes feel like I am going mad! I would really like to get my life back on track and get back my ‘get up and go!’ I would be very grateful for any advice.
Gregory says
Hi Julie,
Your symptoms of forgetfulness, lack of mental clarity, tiredness, pins and needles, twitchy legs (restless leg syndrome) and generally feeling under the weather certainly sound like VB12 deficiency.
Your VB12 level, if is is 228pg/ml, or even 228 pmol/L would all be regarded as low. Our research shows that sub-clinical deficiency starts at around 250-260 pmol/L or 340 pg/ml, so you are considerably below this. Chris has quite a lot of information on his site, but there is more at http://www.mentorconsulting.net/VB12Home.htm
julie says
Hi, i was wondering, I have started supplementing for my low B12 and iron, how long on average should it take for me to get my zap back? Should I feel a significant energy increase or or is it typically a slow, steady process? Is there a guideline to how long it should take to feel 100% again?
Julee says
I have been taking the B-12 for about four months and still do not feel any more energy. I am not sure how long it takes.
Greg says
HI Julee and Julie,
The B12 and zap is a strange thing. It normally needs quite high levels of VB12 to get it, which you normally get from shots, but you can also get from transdermOil VB12. You will need adenosylcobalamin or OHCbl preferably. In addition, you also need to be having at least RDA amounts of B1, B2, B3 and B5, as these are all used in the energy (Krebb’s, TCA, Citric acid cycle). If these are low the energy cycle can’t turn.
Another alternative is low thyroxin levels, which is very common in women as they get older. If you suffer from hyopthyroidism, many of the symptoms are similar to VB12 deficiency. Also up to 20% of people who are hypothyroidic are also VB12 deficient.
sgujar says
Hi Greg,
one day before 2 and a half months i woke up and i started having riniging ears,depression,upset stomach, mbrain fog and memory problems including shortage of breath and lack of energy.I went to the doctor did cbc and had vitamin b12 low as 186 and doctor gave me jamieson 1000 mcg sublinguial ,i used for 2 months had a little difference but my memory got worst and had brain fog including blurred vision.I switched to ola loa hydroxycobalamin and magnesium from natural health and foods and no difference 2 weeks.I dont know what to do as its killing my social life coudnt do anything as i have also skipped my exams because of poor memory and brain fog.I took one injection methylcobalamin 5000 mcg from a naturopath a week ago but didnt felt anything instead my memory and brain fog is becoming worst and i also have pain in my legs.Now i have been to my school’s health doctor and she asked me to do tests for b12 including glucose,potassium,HbA1C,TSH,creatinine,uric acid,sodium,chloride,ALT vit B12 and ferritin.She said if its only b12 she will start injections but she wants to check the others as well to make sure if no other vitamin deficiency.I am wondering if one injection didnt gave me any difference which form of injection should i take or any other suggestion as it is killing education and social life both.
Greg says
Hi sgujar, apart from you very low B12 levels measured in serum, one extra way you can determine that you are functionally vitamin B12 deficient is to have your homocysteine and methylmalonic acid levels tested. If homocysteine is high you need methyl, if MMA is high you need adenosylcobalamin. There is one caveat to this, and if you have MTHFR or similar mutations, you may need methyl but many MTHFR individuals don’t seem to make a lot of homocysteine, as they “just can’t”. One shot of methyl won’t necessarily boost your energy levels. You need adenosyl to fire up your mitochondria.
Gregory says
Hi Lorraine,
If your B12 is sooooo low, you really will have trouble getting your levels up over 300 and keeping them there. Data out on MMA and Hcy says that you are going to have problems if you are below 257 pmol/L, so you are way low. Your injections will only give you temporary improvement for reasons that you will see on the discussion. For more you can check out
http://www.mentorconsulting.net/VB12Home.htm
where I have been trying to put much data on.
You will find it hard to get the medicos to understand all this, for some reason they appear VERY uninformed about B12 deficiency.
Good luck,
You can email me direct if you want info that you can’t find.
[email protected]
Felicia says
Lorraine,
I too was diagnosed with pernicious anemia, and thankfully found a naturopath who could identify it and treat it (B12 injections like you are doing plus diet and supplements). Greg has also been really helpful with information so I can do the best I can with where I am. I never tested my serum B12 before I started injections so have no idea what it was then, but now things are much better overall. I hope you can hang in there and get the help you need — working with a practitioner who understands this is not always easy, but so important. And Greg has some valuable data to support you hopefully so you can find some relief. I started out with daily B12 injections then went to 2x a week and now am on 1x a week and that works great for me. I never went to sublinguals because it was believed I couldn’t absorb them as well. For others, those work great. It took a long time (2 years) to see things really turn around but it has so been worth it. If I can be of help to you at all, please let me know.
Lorraine says
Thank you for the information I will look into the information you have advised. I got my last shot yesterday and no further information I was told to take 100 mg of b12 tablet form yes 100mg the pharmacist thought this was hilarious and gave me the sublingual 1000 apparently you just have to deal with it. It is not funny when you can’t walk in a straight line and everyone thinks you are drunk. The Dr’s don’t seem to want to discover the real picture.
Thanks for the advice
Lorraine Saipe says
Hi,
I have just found this post last Friday I was diagnosed with Pernicious Anemia after a test for the antibodies I do not have this. I have had 2 injections of B12 and will get another tomorrow and then he says that I can’t have any more and will have to go onto tablets. My B12 was 130 and folate was 1030 my problem is I am walking around like a drunk and this has got worse today. I am having severe bowel problems and have organised to get this checked out within a month. My concern is that the damage is permanent I already have a permanent back injury and am scared of falling and causing more damage. I initially thought that my bp tablets had knocked out the potassium as my bp was dropping low and I was vague in the head then the tingling in the hands and feet started. Any advise you can give me would be appreciated.
Thanks Lorraine
Lily says
SORRY FOR THE ‘SHOUTY’ CAPITAL LETTERS, BUT I THOUGHT THEY MIGHT GARNER MY COMMENT A LITTLE MORE ATTENTION AMONGST THE APPROXIMATELY 1000 COMMENTS THAT ARE IN THE EVER-EXPANDING DISCUSSION SECTION HERE! 🙂
I AM JUST LETTING READERS OF THIS B12 ARTICLE (PUBLISHED MAY 2011) KNOW THAT CHRIS KRESSER ACTUALLY WROTE A FOLLOW-UP ARTICLE ABOUT B12 DEFICIENCY ON JANUARY 18, 2013.
ADDITIONALLY, HE PROVIDED AT THE END OF THAT FOLLOW-UP ARTICLE HIS SUGGESTED LIST OF THE *FOUR* SUPPLEMENTS (BRANDS, TYPES, AND DOSAGES) TO TAKE IF YOU WISH TO REPLENISH YOUR B12.
PLEASE CHECK OUT HIS “NEW” POST ON B12 TO GET HIS LATEST THOUGHTS ON B12 DEFICIENCY AND SUPPLEMENTATION.
THE DIRECT LINK TO IT IS: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency
Felicia says
Wow, thanks Lily, I did not see the other article until you shouted it out, so much appreciated. Lots more info in that piece and the comments, very helpful!
Georgette Toews says
My husband has been diagnosed with B12 deficiency after complaining of extreme fatigue. He is 80 years old but very active bicycling 3000 miles a year. He had cerebral arteritis last year and was on prednisone for the entire year. He came off it in October. While on the prednisone, his energy levels dropped a lot and his rheumatologist has said this may be the “new normal”. However, he has suddenly experienced an even greater fatigue. His B 12 level is 186pg/mL. Total iron 104. All other labs seem normal. His doctor has ordered B12 shots, 3 over 3 months. He had one shot yesterday and has not achieved any relief yet. What can he expect from the shots and could the prednisone have anything to do with the deficiency?. Thank you.
Melinmo says
Chris, appreciate you making this post available for extended commentary. I just started Jarrow Methyl B-12 two weeks ago and then found Fredd’s protocol yesterday. Additional supplements should arrive tomorrow. My mother was diagnosed with MS 12 years ago, so when I started having neuro symptoms four years ago, I assumed that’s what I had. I have a long history of symptoms that I haven’t sought medical attention for, but I have been diagnosed at various times with UC, GERD, gastritis, allergies, chronic gingivitis which doesn’t respond to treatment, and most recently estrogen dominance.
By God’s grace and a healthy lifestyle (I have been weight training for over 20 years), I no longer have symptoms of any of these conditions except estrogen dominance and gingivitis (though I’ve had diminished symptoms of these since starting B12). I had PVCs when I was pg with my first 17 years ago which the cardiologist said were normal. When the neuro symptoms started four years ago, the PVCs were back. They have been mild and scarce until the last several months when I’ve had the sensation that my heart has completely stopped and I feel like I’m going to pass out. Terrified me as I have not experienced this sensation before. I know it isn’t anxiety related (I’m a psychologist).
By the way, my mother’s B12 level hasn’t been checked. She just started taking Methyl B12 at my request and I will probably have a hard time getting her to try more as she is very trusting of her docs. My question is this: Since taking the B12, I’ve been excessively thirsty, the palpitations got worse, have had increased dizziness, pulse dropped into the 50s, had more twitching, an edgy feeling (like I’m hopped up on caffeine) and I’m experiencing a burning sensation in my lips, fingertips and feet. I have been taking one to two Potassium supps (the ones around 500mg) a day for the past few days when I discovered you need more with B12. Are these all symptoms of potassium deficiency or am I experiencing some healing?
I am unwilling to see a physician for these symptoms because I know that they won’t give me the tests I want, will put something on my medical record that may make it impossible for me to get insurance if I need to change plans in the future, and will want to treat me with immuno-suppressive drugs that have killed a friend of mine (giving her cancer). At the same time, I don’t want to die because I’ve got a potassium or other deficiency that isn’t being sufficiently treated.
I’m not going to bore everyone with a long list of symptoms, but I realized yesterday that I constantly have skin peeling from the inside of my mouth. I have always thought of that as normal, just disposing of it like you’d blow your nose. I now know that isn’t normal at all! For the second time in four years, I’m also experiencing considerable hair loss. How long should it take before I stop losing so much hair?
Thanks in advance for any information or encouragement.
Amber says
Melinmo,
Someone else pointed out that along with potassium, you need to watch out for magnesium. I was also getting twitchy and edgy sensations (like restless legs) and I added a nightly magnesium to my routine. It really helped.
Melinmo says
Thanks, Amber. I already take quite a bit of magnesium, so I don’t think that’s it. How far along in this process are you?
Amber says
Hi Melinmo, I’ve been doing Freddds protocol for about a month and half now. It’s really helping me. In fact, I just picked up my recent lab results, and compared to 4 months ago, my blood cell numbers are slightly higher (I’ve been anemic all my life, so this is a very good thing!!! woohooo!)
Sorry, I don’t know what else could be causing your side effects. As for hair loss, which has been a major problem for me, it FINALLY seems to be lessening since I added a B-complex to the mix a week and half ago. I’m probably low in another B. I had bad reactions to other B complexes, so it took me a while to find one which suited me. Now I take Swanson Ultra Activated B complex, which I’m doing well on.
I strongly suspect I have the variants of MTHFR gene which limit my ability to process folate. I was surprised by my recent lab results…B12 serum was in normal range (708 pg/ml), but folic acid number was in the “excessive” range, at >24.00 ng/ml. Folic acid can build up in the blood when there’s not enough MTHFR to process it to the active form (as far as I understand). And of course, without active folate, the B12 is then unable to be processed and hence B12 deficiency symptoms. Unfortunately my useless doctor refused to test homocystiene or MMA, which could clarify things for me. Nevertheless, I ordered a 23andMe test, so hopefully will have my answers soon.
I hope you also figure out whats going on!
Arunnie says
I’m having headache and tinnitus in my ear for long time. Sleep disorder and IBS also giving me problem. Unable to focus / concentrate on my work and took several absenses. I had sleep study and even rented CPAP and used. But no improvement at all.
All kinds of blood test was done and everything was normal. I met psychiatrist and was with anti-depressent for 1 year. because of anti-depressant my problem was solved little, but core problems are not solved. i’m unable to wakeup in morning and feel tired and uninterested. it seems to be Chronic Fatigue syndrome.
For last one month i’m taking magnesium supplement and feeling good at morning. i’m able to wakeup at morning but not fully cured. ( Due to IBS for long time, essential mineral like magnesium was not absorbed properly )
Now i’m having headache and slight giddiness still.
I don’t know what to do. I need help from anyone who experienced the same symtoms of mine.
karina says
I am 33 and have a lot of symptoms of b12 dif and get b12 shots for my fatigue but when I asked my naturopath to test me if I actually have defficiency she said that most of the the tests are not accurate and they do not tell how much of b12 is stored in the body. Is she right?
Freddd says
Hi Karina,
She is right. However, you made need other forms of b12, ie AdoCbl, MeCbl as well as l-methylfolate and L-carnitine fumarate. These four susing succeed in getting energy production and healing going. Other vitamins and ,inerals are needed too. But the test just can’t tell you anything useful, espcially not after an injection, and before they can only say how bad it is, not what willl work. They dfon;t interpret them properly. Check out those lists of symptoms a few posts above this. Find you symptoms.
Freddd says
Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1
Others mentioned similar patterns and variations.
23. Initially – Mecbl
24. +5 months 400mcg SAM-E
25. + 4 months AdoCbl
26. + 3 months titrate +50mg zinc
27. +4 years 400mcg Metafolin
28. +1 year LCF
29. + 1 month TMG 1000mg/day
30. 30mg MeCbl injections (3 or 4) daily,
31. +0 Reduce SAM-e to 200mcg
32. + 4 years remove TMG
33. +6 months increase SAM-E to 800mcg
14 Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far
Sexual related symptoms, both men and women – These responded with the most response to lesser responses in order to MeCbl, Metafolin (l-methylfolate), AdoCbl, L-carnitine fumarate
reduced libido – loss of sexual desire
loss of orgasmic intensity
unsatisfying orgasms
inability to orgasm
loss and/or change of genital sensations
burning genital skin sensation
unable to feel aroused
numb genital skin
low sex hormones
MEN
In order of response – MeCbl, AdoCbl
low testosterone men
In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
erectile disfunction men
In order of response – MeCbl, Metafolin, AdoCbl
low sperm count
poor sperm motility
Poor sperm quality
no sperm
WOMEN
In order of response – MeCbl, AdoCbl
low testosterone
low estrogen
In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate
post partum depression
post partum psychosis
In order of response – MeCbl, Metafolin, AdoCbl
Frequent miscarriage
In order of response – MeCbl, Metafolin
False positive pap smears, defective cells
menstrual symptoms
Freddd says
Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1
Others mentioned similar patterns and variations.
12. Initially – Mecbl
13. +5 months 400mcg SAM-E
14. + 4 months AdoCbl
15. + 3 months titrate +50mg zinc
16. +4 years 400mcg Metafolin
17. +1 year LCF
18. + 1 month TMG 1000mg/day
19. 30mg MeCbl injections (3 or 4) daily,
20. +0 Reduce SAM-e to 200mcg
21. + 4 years remove TMG
22. +6 months increase SAM-E to 800mcg
13 Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far
MeCbl – AdoCbl – L-carnitine fumarate – Metafolin
shortness of breath, oxygen hunger
heart palpitations
MeCbl – AdoCbl – L-carnitine fumarate
extremely sore neck muscles reversing normal curvature of neck
painfully tight, stiff muscles, especially legs and arms
frequent muscle spasms anywhere in body
weak pulse
MeCbl – AdoCbl
Confusion
Disorientation
Difficulty in word finding
MeCbl – AdoCbl – Metafolin
irritable
depression
SAD – Seasonal Affective Disorder
mental slowing
personality changes
chronic malaise
poor concentration
moodiness
tiredness
mood swings
memory loss
listlessness
impaired connection to others
mentally fuzzy, foggy, brainfog
dizziness – even unable to walk
Vertigo
MeCbl – Metafolin – AdoCbl – L-carnitine fumarate
psychosis, including many of the most florid psychoses seen in literature, megaloblastic madness
Alzheimer’s
delirium
dementia
paranoia
delusions
hallucinations – multisensory
anxiety or tension
nervousness
mania
Widespread pain throughout body
A caution, those with anxiety and panic symptoms may respond with extreme moods of increased fear, anxiety, panic, anger rage, homicidal rage and profound depression, usually in repeatable sequences following LCF or ALCAR even at levels of 1mg oral. A micro titration of carnitine would be cautious. While most find the moods intolerable, certain persons have been able to tolerate these (both past) and current, to find they can fade after some months of consumption. A few people may find similar, maybe somewhat lesser, response to MeCbl or more likely AdoCbl. As these are less controllable than LCF which can be micro dosed, they should be considered first.
Freddd says
Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13, Version 1.1
Others mentioned similar patterns and variations.
1. Initially – Mecbl
2. +5 months 400mcg SAM-E
3. + 4 months AdoCbl
4. + 3 months titrate +50mg zinc
5. +4 years 400mcg Metafolin
6. +1 year LCF
7. + 1 month TMG 1000mg/day
8. 30mg MeCbl injections (3 or 4) daily,
9. +0 Reduce SAM-e to 200mcg
10. + 4 years remove TMG
11. +6 months increase SAM-E to 800mcg
12. 12Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far.
These symptoms are what responded very well to CNS penetrating doses of MeCbl either as 50mg sublingual single 4-5 hour dose or 4 x 7.5mg or 3 x 10mg or for some 2 x 15mg subcutaneous MeCbl injections. Metafolin in some way enhances retention of AdoCbl and MeCbl with excretion visibly decreased. A sublingual dose of 1-2 tablets each hour added for 12 hours appears to generate substantial CNS penetration as well.
CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils
Elevated CSF Hcy
Low CSF cobalamin
limbs feel stiff
Drowsy
CNS penetrating dose MeCbl – AdoCbl
dimmed vision – usually not noticed going into it because change can be very slow or present for life
Clumsiness
CNS penetrating dose MeCbl – AdoCbl – Metafolin
Slow to adapt to night vision
CNS penetrating dose MeCbl – AdoCbl – Metafolin – LCF
Difficulty in word finding
CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils
Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
demyelinated areas on nerves
subacute combined degeneration
axonal degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
positive Romberg
positive Lhermittes
Loss of motor control over some or all of toes
Loss of motor control over part or all of feet
Loss of sense of joint position
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
sudden “ice pick” pain
decreased reflexes
brisk reflexes
Foot Drop
tripping over toes
injuring toes catching top of toes on floor
general feeling of weakness
Freddd says
Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13 Version 1.1
Others mentioned similar patterns and variations.
13. Initially – Mecbl
14. +5 months 400mcg SAM-E
15. + 4 months AdoCbl
16. + 3 months titrate +50mg zinc
17. +4 years 400mcg Metafolin
18. +1 year LCF
19. + 1 month TMG 1000mg/day
20. 30mg MeCbl injections (3 or 4) daily,
21. +0 Reduce SAM-e to 200mcg
22. + 4 years remove TMG
23. +6 months increase SAM-E to 800mcg
24. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far.
These symptoms are what responded very well to L-carnitine fumarate AND AdoCbl for the first two items
L-carnitine fumarate – AdoCbl – Metafolin – MeCbl
weight loss involuntary
muscular atrophy
exercise does not build muscle
L-carnitine fumarate – Metafolin – AdoCbl – MeCbl
weight gain, watery fat
edema
L-carnitine fumarate – AdoCbl – MeCbl – Metafolin
mild to extremely severe fatigue
continuous extremely severe fatigue
easy fatigability
severe abnormal muscle fatigue up to and including apparent paralysis leading to death
weakness
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
AdoCbl – L-carnitine fumarate
exercise debilitates for up to a week, making things much worse
accumulating muscle pains following exertion
sore muscles throughout body
lack of muscle recovery after exercise
High urinary MMA
AdoCbl – L-carnitine fumarate – Metafolin
congestive heart failure
Elevated CSF MMA
Elevated uMMA
Freddd says
Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1
Others mentioned similar patterns and variations.
1. Initially – Mecbl
2. +5 months 400mcg SAM-E
3. + 4 months AdoCbl
4. + 3 months titrate +50mg zinc
5. +4 years 400mcg Metafolin
6. +1 year LCF
7. + 1 month TMG 1000mg/day
8. 30mg MeCbl injections (3 or 4) daily,
9. +0 Reduce SAM-e to 200mcg
10. + 4 years remove TMG
11. +6 months increase SAM-E to 800mcg
12 Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far
These symptoms responded relatively partially first to 5 star MeCbl and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.
splits/sores at corners of mouth -angular cheilitis
impaired white blood cell response
poor resistance to infections
easy bruising
pronounced anemia
macrocytic anemia
megablastic anemia
pernicious anemia
decreased blood clotting
MCV > 93 first warning,
MCV > 97 alert
MCV > 100 outright macrocytosis
MCV > 105 urgently needs treatment, severe problem
Plus Vitamin E
Child with neural tube defects
mother of child with neural tube defect
These symptoms responded not at all first to 5 star and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.
lack of dreaming
MCV > 100 outright macrocytosis
macrocytic anemia
metallic taste
Widespread body & muscle pain responding to NSAID
Joint pain responding to NSAIDS
splits/sores at corners of mouth -angular cheilitis
Freddd says
this post this is a list of symptoms that are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations of nutrients.
These symptoms responded almost entirely or entirely to 5 star MeCbl – Methylcobalamin – Methylb12 – Mb12 – Mecobl with basics. Many started improving in hours. Others took 9 months to correct.
5 star MeCbl – Methylcobalamin – Methylb12 – Mb12 – Mecobl with basics
morning joint stiffness and pain
paleness
rapid heart rate
standing with eyes closed, lose balance
hands feel gloved with loss of sensitivity – glove anesthesia
feet feel socked by loss of sensitivity – stocking anesthesia
glove and stocking anesthesia
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
fecal incontinence – occasionally to frequently
diminished hearing – gradual onset or present for life, sudden return possible
tinnitus – ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
sleep disorders
non restorative sleep
Night terrors
Prolonged hypnagogic or hypnopompic states transitioning to/from sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
taste hallucinations
smell hallucinations
sound hallucinations
visual hallucinations
alterations and loss of smell
loss of smell and taste of strawberries specifically
loss or alteration of smell and taste of potato chips specifically
roughening and increased raspiness of voice, mb12 can smooth in mid word
blurring of vision – can be sudden onset and sudden return
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atrophy
centrocecal scotomata
hypersensitivity/intolerance to bright light
intolerance to loud sounds
intolerance to multiple sounds
burning muscle pain
burning muscle pain
diminished hearing – gradual onset or present for life, sudden return possible
tinnitus – ringing in ears
sore burning tongue
Jacquie says
I was diagnosed with b12 deff over a year ago, had weekly jabs for 10 weeks then 2 monthly since, but all my symptoms remained and infact started to get worse. GP sent me to rheumatologist and neurologist and now been diagnosed with fibromyalgia, as they state my symptoms of pain in all parts of body, diahorea, memory loss, the fogs, pins and needles and numbness to name but a few symptoms, are not due to b12. Now on anti depressants as that’s wat they give for fibro and codydramol which after just over a week no change at all. I’m now finding it difficult to walk but GP just fobs all this off. Tried to get dla or incapacity benefit as cant work and been refused as GP makes less of it. I am in so much pain day and night, can’t do my bra up myself due to the bad pain if I try, I do try to keep moving but every step beyond approx 6 to 8 steps is agony.
Mary says
Jacquie, you should watch the videos on this page. I bet you have the MTHFR genetic mutation. http://www.methyl-life.com/a-doctor-explains.html
Also for pain, have your vitamin D levels checked. And don’t let them give you D2- take D3.
Freddd says
Hi Jacquie,
FMS is caused by various combinarions of deficiencies of body and CNS (brain/cord) of mostly MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate. I used to have fibro and all the stuff that goes with it. I’m cured and have been for some years now. I figured out how. The tests don’t begin to to tell the stories. Stop the nerve damage before it gets worse. I came close to a wheelchair and are now maybe 6 months away and holding becasue of nerve damage.
Mark says
Hi Chris and Fredd,
Kudos to you both for providing so much vital information and care for so many around the world.
Am writing to you from Hong Kong.
For years I have been telling Doctors of my many many symptoms to no avail- including Dizziness/ Weakness/ Joint pains/ Sore mouth and Tongue/ LOC/ Frequent Bowel disorders/ smelly farting/ Disturbed sleep/ excess sweating/ skin rashes & warts/ Hair loss/ Boils on knees and legs/ Shaky fingers and hands etc…+ “Hyper-pigmentation” all over my body for last 15 years & have severe Psoriasis since the last 20 years- resulting in a very dark, itchy & easily-bleeding skin rash condition around the entire Groin and anal region.
In fact I had been taking supplements for several years- including Life Extension B Complex + Vit D3 1000IU + Nature Life’s Vit C but still my condition worsened severely! Then finally they discovered my B12 deficiency just by luck- which came in at 141Ng/L. Further my Vitamin D-25 Hydoxy Test came in low at 13 Ng/ml (or 33 nmol) so relatively deficient too!
Blood Intrinsic Factor and Hemoglobin levels all tested fine- hence not presumed to be suffering from Pernicious Anemia (yet!) or Auto-immune Disease. Folate/ RBC Folate/ TSH Thyroid/ Creatinine/ Platelet/ INR/ Cortisol levels all were fine!
Further the Biopsies from a thorough Endoscopy were all fine too + Brain scan showed no neurological damage to date. Waiting to do a Hydrogen Breath test + Colonoscopy + the Capsule Exam to rule out Crohns Disease/ Celiac Disease + maybe a Bone Marrow Biopsy! Not sure if I need to do a Urinary MMA test or a MTHFS test (to determine if body can metabolize Folic acid).
Moreover its interesting to note that my sister was diagnosed 6 months prior with the same issues- ie low B12 of 170 and low D of 13- but for decades she has suffered from Iron deficiency Anemia caused by Menstrual blood loss. Docs feel there could be a correlation to my case as Celiac tends to run in the family. I did actually try a Gluten free diet awhile back for 4-5 months which didn’t help but Docs feel it probably needs to be stricter.
To boost my level at once- I ordered Methyl-cobalamin Injections (500mcg weekly) just to start with and plan to use Sublingual tablets thereafter. However the main issue that remains is WHY the B12 + D are deficient…ie What is the Cause resulting in these Symptoms?
Pls note I eat a very healthy and balanced diet with meats, dairy, fish, vegetables, fruits and exercise very regularly.
So Doctors here are very hesitant to treat the Symptoms before ascertaining the true Cause.
Nevertheless I have ordered some Supplements from your recommended list and based on people’s past experiences shared over the net- it seems the best Brands to currently use are:
-Enzymatic Therapy 1mg B12 Infusion Daily (How do you chop the tabs to one tenth or a quarter?)
-Solgar Methyl-Folate 400mcg Daily (to be taken sublingual or just swallowed?)
-Adenosyl B12 Source Natural’s Dibencozide 10mg Weekly
(I realize that Anabol Dibencoplex is the preferred choice now so will switch to it once my supply of above runs out)
+
-Enzymatic Therapy 2000IU Vitamin D3 sublingual chewable tables
-Mens Optimized Multi-Vitamin Vitacost (sadly discovered it contains Folic Acid but only 200mcg/tab)
-Vital Nutrients Pure Fish Oil
+
Plan to eat 2 Bananas daily to boost Potassium levels
So wanted to ask your expert opinions on whether the above seems like a reasonable method of treating my current conditions (or if you have any other Brand or Supplement recommendations ) and further if you can advise me the best times of day to take the above- given that the sublingual tablets need much time to dissolve.
Much much appreciated!
Mark
ps. Sorry for the extensive mail!
Greg says
Hi Mark,
It is good that you have recognized your deficiency. A couple of comments, depending upon your conditions you will need both adenosyl and methyl cobalamin. Our calculations indicate that if you are truly deficient, and certainly being below 200 pmol/L we would regard as extremely low as data suggests that being less than 300 pmol/L should be regarded as low. So you and your sister definitely is very low.
Next thing to overcome the deficiency, the amount of VB12 you absorb orally is less than 1% of the dose if you use the high dose supplements, as uptake is entirely non-specific. Now the VB12 that is absorbed has to get onto transcobalamin II, which is the transporter for vitamin B12 around the body, which controls vitamin B12 uptake into the cells. IF you get vitamin B12 across the gut non-specifically, the majority of this does not get onto this transporter and so you pee it out and it is wasted. So whilst it may appear in the serum it is NOT on the transporter. We have also calculated that even if you had an intact Intrinsic Factor mediated uptake, it would take 20,000 days to overcome deficiency and get back to normal, which clearly is not going to happen, particularly as you loose 1 ug VB12 per day.
It is for this reason that we developed a transdermal system for vitamin B12. Using this technology the vitamin B12 is slowly released into the blood thereby allowing much more time to get onto the transporter (transcobalamin II).
Next the vitamin D3 deficiency, recent data in the literature suggests that oral supplements for this are not very effective, and it would be much better to have topical vitamin D3. FYI many of the conditions associated with vitamin B12 deficiency are also associated with vitamin D3 deficiency, which brings me to your psoriasis.
We currently have a topical curcuminoid preparation that should be beneficial for psoriasis. It is in a non-sticky oil, which should give relief on its own, but you would need both vitamin B12 and vitamin D3 to really try to deal with it. (Look up the anti-inflammatory activity of curcumnoids).
You can contact me off line if you want to know more about potential products for this [email protected] . Good luck with it all
Mark says
Hi Greg,
Really appreciate yr detailed reply.
For now have started treatment with the oral supplements & will see how that goes.
Will keep u posted.
Thanks n best,
Mark
Freddd says
Hi Mark,
I take the Enzy 5 at a time, 6 times a day along with about 3.33mg of AdoCbl once a day. The root cause of so much of this appears to me to be pardoxical folate deficiency cased by either folic acid and/or flolinic acid/veggie folate. That can casue the entire set of symptoms then over decades. B12 goes deficienct ffor all sorts of reasons most never deternined. Once the folate and then b12 go low, then one has partial methylation block, methyltrap and parrtial ATP block bseparately in CNS and body.. They all feed back and forth on each other and symptoms can flip around paradoxically. So in treating them I think it works better to start with small doses of MeCbl AND AdoCbol plus 200mg of Metafolin. Then when you get to a certain pint perhaps 100mcfg of absorbed active b12s and healing starts. Perhapos 1/4 of an ENZY 1mg and a bit from the Anabol AdoCbl capsule under the lip for as long as possible. After healing turns on about the 3rd day more potassium perhaps 1200-3000mcg titrated a few hundred mg at a time. 4-6 doses a day for the total. Something similar had to be done with possible paradoxical folate deficiency symptoms, titrate Metafolin to effectiveness, also in multiple doses.
Mark says
Hi Fredd,
Many thanks for your help and reply.
So I am on Day 3 & have been taking following:
-Multi Vitamin 1 Tab
-S.Folate 1/2 of 400Mcg
-Ultra Pure Fish Oil 1 Tab
-1/4 of B12 E.Therapy 1mg under lip
-2000IU of D3 E.Therapy under lip
+ eating some Bananas throughout day for natural Potassium
and will start some AdoCbl 1/4 from next week
Do you feel there is anything else I should add or beware of?
Lastly I have a real hard time chopping the tablets into smaller pieces- dont know how you guys get them into 1/4 sizes without crushing some of it into powder?
Thanks for all!
Mark
mizzdiagnosed says
FREDDD…ty for your fast response, I will be talking to a new Doc on Friday, I’m sure it is not MS…not to much pain unless my bones are chilled. Just pure muscle wasting. But years of being misdiagnosed I have to reach out to others and take my own health into my hands and get it fixed, I see my mum and where I will be if I don’t help my self on this. Thank you for all the info you have supplied me with I really appreciate it, and will read every word, this is a hell of alot more than any doc has done for me…..they say oh well see you in year, yea yea its gonna be ok, see you in 6 months….Im done with that garbage, I decide now, I have the power to change my life and my health, thank you so much for the start I so desperately needed.
mizzdiagnosed says
Family inherited and diagnosed with 6 or 7 different neuro muscular diseases ADULT ONSET. (CANADA)…finally told they don’t know what it is, so now I feel I have to figure out what a parent (in a wheelchair now) passed on to 3 children. Now I am wondering if we all can have a B12 deficiency? I have a new doctor and have an appointment Friday with him, in terms and words I can understand, what tests should I ask him for? I will be asking for an MRI, BUT I hope some blood tests will come back with a easy fix (wishing) any help here is greatly appreciated.
Freddd says
If you are looking for an MRI, “weighting” should be set so as to see the appropriate areas etc for Subacute combined degneration demyelinations.. As SACD goes with a MeCbl, AdoCbl and l-methylfolate deficiencies in the body and CNS, MS has MeCbl and l-methylfolate deficiencies in the brain (Elevated cerebral spinal fluid Hcy) and Parkinson’s with AdoCbl and l-carnitine deficiencies in the CNS with elevated CSF MMA. I got to within a month of a wheel chair from SACD and managed to regress it to about 6-12 months from a wheelchair and holding. My maternal grandfather had MS and b12 deficiency, my halfsiblings have lots of symtpoms and I and all 3 of my children have have the same deficiencies. Now they are getting the right vitamins to prevent their getting these nueuromuscular diseases. The tests that they will do are not definitive. A trial with the right brands of vitamins done in the right way will tell you everything. Also, I have a list of hundreds of these symptoms grouped by nutritional deficiencies. I am busy getting those posted. I’ve put up several pages of them and am dping the rest. They are at this link spread across the last half a dozen pages. http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-17
Jan says
Hi
With great concern and confusion, I read this blog. I am in every one of these comments and concerned with every persons experience. I am also unsure when it comes to reading any lay persons strong opinion and do not know whether to run and hide my head in the sand or begin eating all the foods and vitamins and sublinguals and shots and so forth and so on.
Without a doubt, the US is WAY down in their normal numbers for the range that is acceptable for B12. I have been coming here, reading all and trying everything in the world forever and I cannot help it, I am a skeptic of a sort. I am using the subling methyl micro, 5000. I am not sure where anyone is getting injectible in the US now as I am told that the only factory in this country is down. So, I would love to know. But, all of the other stuff was checked and now I have developed a myopathy of some sort on my heart and had to have a defibrillator implanted and I am so over all of this. I have all these neurological problems and now this. It all fits together for what I read here but I need a damn doctor. I need someone who can guide me. I am too confused by all this. What kind would you go to??????
Freddd says
Hi Jan,
Where do you live? In the USA thatere are hundreds of independent compounding pharmacies mixing up MeCbl injections. New England Compounding Center wasn’t supposed to be a factory. It was supposed to be a compounding pharamcy. Unfortunately the only 5 star MeCbl I can suggest at the moment is Enzymatic Therapy 1mg. I take 30+ every day to keep my nervous system functioning. I don’t know how to find a doctor that treats this well. Good luck.
Jan says
Hey
I am in NC. By factories, I am referring to rx grade injectible. I bought my shots via rx and I am only comfortable using that grade for injectibles. I wish I knew where to get it, I will check on the place that you noted, thank you for the info…
Freddd says
Jan, I was giving an example of a compounding pjharamacy turning into a factory and killing people witjh mold contaminated products. They are the BAD example. University Pharamcy in Salt Lake City utah, fills prescriptions for MeCbl injectable by prescriptions and as far as I know is a good example..
Jan says
See, I did not catch that and I am so flipping intimidated by all the posts on here, I just go with the flow. Listen, here is what I have been told, and who the hell knows, ok? the only place that produced B12 for injection here in the US, as of last fall, was shut down due to some type of compromise or something and would eventually reopen. So, I had to go to sublingual. I have no idea if they are working, I have not had my blood drawn in a bit. But, I can say that the beta blocker given to me to keep me alive since the fatal ventricular tach. was found 2/12, has taken my quality of life to crap. The depression is horrible. My cognitive ability has been on a downtrend for so long, and this site overwhelms me more than I can ever tell any one of you. Read all the posts, are you kidding me? When this started for me in 2006 with the misdx of MS, and I was told there was a brain stem tumor, I was struggling with just being told those two things. Now, after the wrong meds being pushed into my flesh, and being told I did not have MS after two years, but rather CIDP, and being treated with IVIG so that I can feel my feet and hands, and now living feeling like a human tuning fork all over, having the cognitive abilities of a person who has been in a coma for a few years and is not awake, nothing makes sense, and I was a stock broker for my career, and worked in Two World Trade. I am not an idiot, or I did not used to be, I am undone. I can find no one. I need an dr. who can tie all my issues together, I need help. I would go on Dr. Phil in a NY minute to get to the PNP clinic in TX for a total overview. And I have super insurance. Just no confidence in any Dr. I have. A machine in my heart, and a team of drs. for my gastro, which is horrible, two hospt stays passing only blood, each stay dictating ten days. THey do not allow you in the hospt. anymore, so you know how sick I was. I was in the hosp in 2011 12 times. I have a monitor on my heart again, and a difibrillator implanted. If I were not afraid to die, I would end this misery. And I cannot read all this. I have been through so much, I did read, I had all the tests ran. I am negative, negative and againg for everything. I have no idea where to run, or to who.
jan says
correction…I was told that I did not have MS after taking meds, betaseron, for four years and it is possibly why I have this heart issue. I have an electrical condition i nmy heart because a spot developed. No disease of the plumbing type. Just a stupid spot in the wrong place to ablate. He tried.
Kaytee says
My last lot of injetible methyl came from Apothecure in Dallas. Don’t know if it’s still available. I’m due to get my next lot very shortly, so if it’s from the US and is a different lab I’ll post on here.
I’ve also put the link to the new video about b12 deficiency from the US again in case you’ve not seen it.
I’m truly sorry to hear all you’ve been through and know from experience how you will be struggling to clarify all the info being thrown at you.
Here’s the link – if nothing else it will prove to you that you are not alone.
Jane says
Hi Jasmine,
I read your question about folic acid. Folic acid plays a big part in the absorbtion of B12. I take B12 and since I’ve been taking folic acid with it it’s made my level stay stable.
heidi says
Hi Jane
You might want to toss out the folic acid and buy some methylfolate. Here is a terrific article that Chris Kresser posted here a year ago:
http://chriskresser.com/folate-vs-folic-acid
Marcus says
DUH… stop buying pills and GET TESTED FOR CELIAC !
Mal-absorption is caused by Celiac disease.
Ask your doctor for the blood tests: tTG-IgA and DGP-IgG
Tara says
Marcus, that’s a somewhat trite and simplistic thing to say to people who have been through the proverbial wringer. I HAVE been tested for celiac. I was negative. Regardless, I am not only gluten free, I am grain free, soy free and dairy free. I have been working for a solid year to heal my gut. But there is ALSO pernicious anemia, which is a lack of intrinsic factor which means that even giving up wheat forever will not fix my B12 issue. Not to mention that many people in this thread, myself included, likely have a genetic mutation or two called MTHFR- which affects the methylation of folate and B12 so while it is good to suggest things that people may not think of, prefacing it with DUH seems a tad bit offensive. Thanks.
Amber says
I second Tara’s response….I was also tested for celiac (negative) but I have 2 copies of another gene which predisposes me to gluten allergy. And I had elevated antibodies for gluten, so obviously it’s a problem for me. Like Tara, I’ve also gone on a paleo type diet for quite some time and avoid grains, but it has not completely healed me. The B12 supplement I now take is the first time I’ve really seen my health begin to improve. It’s helping me sooo much! It’s easy for those who don’t need them to tell others to “stop buying pills”.
Lisa says
I just found out I am B12 deficient or am B12 anemic and just had first injection. I just had my first B12 injection today. Does anyone know if these shots are expensive and are you able to give injections to yourself at home so help w/ cost.
I am a type 2 diabetic and take metformin twice daily and read people who take this are at greater risk for being B12 deficient.
I’ve been experiencing extreme fatigue this past year. I used to workout daily and started to notice my body struggling to get through the work out. I’ve gone from having knee problems, to lower back problems, and now I’m having problems w/ my legs and feet. I would complain to the doctor but they never checked my B12. I’m extremely concerned because I’ve noticed such a big change in my body this past year and I’m only 43 and considered myself to be pretty healthy before.
I am also being tested for MS since and am scheduled for an MRI on Monday. I notice the symptoms are very similiar. I’m wondering if they are linked at all.
If anyone has any thoughts or advice that you think might be helpful I would really like to hear back from you. Thanks!
Freddd says
Hi Lisa,
A lack of both types of active b12, Metafolin and carnitine can casue all your symptoms. If you do the right brands of subclingual active b12s and so on injections are not needded. Thsoe are usually CyCbl or HyCbl and are expensive to be given them and don’t work as well as MeCbl and AdoCbl. These are typically 100 to 10,000 times more effective. I have injected MeCbl at various times. It isn’t as consitantly as good as the best sublinguals.
Jan says
Actually, B12 is not expensive to give yourself shots, but I cannot buy them any longer. The only factory for them in the US, by RX, is not producing due to contamination, according to my pharmacy. So, it is not available. But, when I bought it, it was hella cheap. When you get checked for MS, be sure that they also check your reflexes to be sure that your neuropathy is not from your nerve sheaths instead of from your brain signals. Muscle response tests also. I was dx with MS and did not have it but gave myself shots for MS for four years and as a result, my heart was damaged. Now, I have a defibrillator implanted and I have CIDP, a totally different disease and I have a b12 def. that has to be treated. Chicken, Egg. Who knows. But, make sure you get All the tests you need before they throw you onto meds for MS. You need MS meds if you have it to stop it’s progression but if you do not have it, it can hurt you.
Jasmine says
Does anybody here ever experience or has felt your heartbeat in your knees?
my knees pulsate all the time and it’s been going on for more than a month, at night time it’s so powerful it distracts me from my sleep. I do take magnesium, potassium and metafolin beside my Mb12 and Adb12 and bunch of other vitamins.
Felicia says
I have a couple questions:
Has anyone had experiences with headaches after starting B12 (injections)?
And what about testing B12 levels going forward? I had my MMA tested in 2011 and was diagnosed with pernicious anemia based on that and other information by a naturopath, but no B12 tests since (other blood work annually). Just curious what people are doing going forward with that part. Is there anyone else who specializes in this area that can work at a distance if needed?
I have been doing one injection a week at home of methyl B12, which has really helped my energy levels, and was told I’d likely need to stay on them for life, but am curious now after reading all this.
And Greg, thanks so much for all the helpful information!!
Amber says
Hi Felicia,
I get headaches (and a scratchy throat) if my folate is low. I take a methylfolate supplement along with the B12. I’ve been taking a sublingual B12 daily for a month now and it’s helping tremendously… it’s certainly boosting my levels. I hate getting shots.
Felicia says
Amber,
Thanks for the information — very helpful. I get the throat thing too, wasn’t sure what that is about. May I ask what supplement you like for methylfolate and what you use sublingually? And did you test your levels with any follow up testing at a later date? Thanks so much.
Amber says
Felicia,
I use Solgar Metafolin 800mcg, divided doses thru the day (and up the dosage as needed, per my symptoms), and Enzymatic Therapy B12 1000mcg (I hold this in my upper lip so it dissolves slowly). I’m careful to avoid folic acid which exacerbates my low folate symptoms. Maybe I’m unable to process folic acid into the active form, but apparently this is common.
On this protocol, low potassium can be a problem, so I pay attention to any muscle cramps or malaise which low potassium can cause. It’s a lot to keep track of 🙂 I’m becoming much more body aware these days! I have a 99 mg potassium supplement I take as needed (forget which brand, don’t think it matters).
I just got my B12 level checked 2 days ago and am waiting for the results. I wish I’d been tested before starting B12, but the doc couldn’t get me in for a month, and I was really suffering, so didn’t want to wait.
Finndian says
By the way… Fredd never mentions it but if you are potassium deficient then you are surely magnesium deficient. They go hand in hand. Muscle tension or problem are almost always solved by magnesium for me. Also, taking potassium if your indeed magnesium deficient will highlight magnesium deficiency symptoms and bring them to the forefront. I would look up magnesium deficiency symptoms and see if you are experiencing any.
Amber says
Thanks Finndian,
It helps me sleep well if I take Magnesium and zinc right before bed. If I forget, then after about 2 hours of tossing and turning while my husband snores away, I finally remember, and go take it! I get the restless legs symptom at times (very annoying sensation), so now I know it’s probably low magnesium. I’m hoping as my gut heals, I won’t need so many supplements. But for now, they help.
Finndian says
Definitely helps restless legs issue for me too. My sure sign of magnesium deficiency is muscle pain and stiffness across my shoulders and up my neck. Oddly, enough I start grimacing a lot as well. Like getting out of my car or some other odd physical motion or ever remembering a forgotten appointment… I’ll screw up my face. Odd thing is that I’ve read a couple studies that say magnesium helps Tourette’s syndrome sufferers. Always wondered if my grimacing has anything to do with that.
Once my gut condition improved my magnesium needs have plummeted. Good luck. Don’t forget L-glutamine, meticlear plus and high dose BCAA’s… thats the combination that finally cured what I assume was Leaky Gut syndrome.
Tara says
Finndian,
Could you speak more about what you did to heal your gut? I take L-glutamine. What is meticlear and BCAA’s? I am really struggling. I changed my diet, I am doing the methylation supplements but everyone says that is pointless until you fix your gut.
Felicia says
Amber,
Thanks for the info, and very interesting about the folate. I was taking a Thorne supplement with both B12 and folate in it (one bottle a couple months ago) per my naturopath and then a Pure Encapsulations methyl B12 and folate (800 mcg) after that but wasn’t tracking the headaches then so that would be interesting if the headaches are more related to that than too much B12 (because I was also doing 1-2x a week injections then).
May I ask what test you did to test your levels? Serum B12, MMA and Hcy or something else? I’d love to hear the results if you don’t mind sharing, and I can give you my email if that’s easier.
Amber says
In a perfect world, where doctors actually listen to patients, I would’ve done a B12 serum, urinary MMA, and homocysteine. With my doctor, he refused to test MMA and homocysteine, unless B12 results come back low. Which is a mistake, since B12 serum level can be high, but there can still be a functional deficiency (I don’t understand the mechanism behind this). He ordered some other lab tests, I think for thyroid.
He was more interested in prescribing drugs than listening to me. I won’t go back to him…but it’s very hard finding a decent doctor in my area.
When I get my results back, I’ll let you know what my level is!
Felicia says
Thanks for the info, and for sharing your results when you find out. Very helpful.
Greg says
Hi Amber, It is actually very important that you get your MMA and Hcy levels tested. From my reading, one of the reasons that they don’t routinely test it is because the tests are very expensive. Another reason is that most doctors do not really know much about deficiency and how it affects Hcy and MMA and what the consequences are. If you only get your B12 levels tested be aware that the US lower limit of normal is for clinical deficiency, such as you would expect if you were anemic. This level is way too low. There are many papers that show that Hcy and MMA start to increase when your levels drop below 300 pmol/Lm or 406 pg/ml. Elevated MMA leads to gradual demylination of your neurones, whilst elevated Hcy leads to lots of cardiovascular events, so it is quite important that you keep them low all the time.
Felicia says
Amber,
Just following up to see if you have had any additional feedback about your lab tests and B12+ levels. I just tested my B12, MMA, Hcy and Folate levels and am waiting to see my practitioner to go over them. My B12 was >2000 and I have been doing injections (weekly until now, and twice weekly before that) for a couple of years, so we shall see. If I end up staying on B12 supplements I would sure like to use the sublingual ones going forward. I love the energy levels I’ve had since starting the injections but to be honest, I really do not like them. So we shall see, and I’ve love to hear more about your results if you feel like sharing.
Amber says
Hi Felicia, I just picked up my results a couple days ago. I was quite surprised by them! The good news…for the first time ever my hematacrit (blood count), has gone up a little compared to what it was 4 months ago! This has never happened before…I’ve been anemic all my life, so I’m thrilled to finally see something helping with that. I knew I have less brain fog, and better days lately of being able to function, but it’s good to see it on paper.
The weird stuff now….I’m really regretting not insisting I have the Hcy and MMA tests done, coz it could’ve clarified things: My B12 is 708 pg/ml, and my folic acid level is >24 ng/ml which is “Excessive”. To me, this really points to a problem with my processing folic acid into its active form, so it accumulates in the blood, unused. And not enough active folate, of course means the B12, which is used in the same metabolic pathway, is also not being utilized, hence my B12 deficiency symptoms. That’s my theory anyway….I’ve sent out a 23andMe test and am awaiting the results to see if I have the MTHFR gene defect (I strongly suspect I do). In the meantime I’m continuing Freddds protocol, but I tend to still get headaches very easily if I don’t take enough methylfolate…I might need a much higher dosage than what I’m currently taking. I’m looking around for a higher dose methylfolate, so far I found one but it’s very expensive.
Do share your own results if you don’t mind, I’d be very interested.
Finndian says
I don’t know what it is with the B12 and the throat. When I was at my worst I actually got a paralyzed vocal cord and couldn’t speak for 3 months. Injecting B12 every week brought the cord back to life but it was scary. Now I know I need extra B12 when I get hoarse for no apparent reason because I know that the feeling is of the vocal cords getting weak and the irritation is them not vibrating properly.
Felicia says
Finndian,
Wow, I had no idea those could be connected, thanks for the information.
Felicia says
Amber,
I didn’t see a reply button under your post so am replying to one down, hope it works.
Great to hear you got your results and are finding some improvements. Was your hematocrit really low? If you feel like sharing that level that might be helpful too. And hopefully you’ll get some responses about your other concerns — I’m not familiar enough with this issue to be able to respond, but it really helps to hear your story. Did you say you are also working with a practitioner?
My levels were B12 >2000 pg/mL (and I unfortunately never tested it before this)
Folate 17.4 ng/mL (first time I tested)
Hcy 5.53 umol/L (first time I tested)
MMA (serum) .14 nmol/mL (I only did serum because that’s what I did once before)
and my HCT was 41.7
I was diagnosed with pernicious anemia (by a naturopath) two years ago based on blood work and symptoms and that’s why I started the injections (weekly up to now), but now I am revisiting it all to see what will be the best path forward. I also have an autoimmune condition (psoriasis) and have been off gluten for 10 years and most dairy for about a year. So it’s been really helpful to hear what people are doing and Chris’ responses, since I had no idea this affected so many people.
Felicia says
Btw Amber, my practitioner responded today already about the test results and said the high levels of serum B12 were not a concern but the low level of MMA is, perhaps a sign that the pernicious anemia is acting up, so I will see her this week. So glad I got these tests done so I can follow up for now, so I will be staying on weekly injections for now until I learn more.
Freddd says
A headache after stating b12, and orthwer symtoms too, two entire groups of symptoms can often appear. They are hoifger up on this page. They usually are low potassium wich can be dangerous. People start helaing and and on the 3 or after day potassium can go low as cells get made. Somewhere between 1200 and 3000mg of additional potassium can be helpful. The other set of symptoms are often folate insufficiency. Often people get so much healing started that other deficiencies are induced and folat l-methyfolate deficiency often is the one.
Julee says
Fredd, is there a certain brand of potassium you prefer?
Felicia says
Freddd,
So can you use serum potassium levels as a guide in this process? Just curious. I know my levels have been borderline before, and I drink mineral water with potassium in it, which seems to help overall too.
Lisa says
HI Felicia,
I just had my first B12 injection and I’ve been getting headaches ever since. I’m assuming it’s from the injection. Right now I am getting monthly and they will do a follow up blood test in 3 months. How were you able to get the at home injection. I inquired about that today and they told me that you would have to have a nurse come into the home to administer. My concern going forward is the expense of the injection. I would definitely call your doctor and have them do follow up bloodwork on your B12 to see if your count has gone up or down.
Tara says
My husband does my injections. My doc wanted me to have it done in the office for a while and then she wrote me an Rx for the B12 and another for the needles.
Felicia says
Lisa,
Thanks for the information, and sorry to hear about the headaches — hope that gets better. I am able to do home injections because my naturopath (in Colorado) gets the B12 through a compounding pharmacy and I buy it from her, and then she taught me how to do them myself in my thigh (she gave me the first two injections). Was challenging at first and now very simple. They sell the syringes or you can get them online. And the B12 (methyl) is $30 a vial and lasts me a long time — more than a month for sure (and I do injections once a week). And thanks for the suggestion about follow up testing — good to know that’s confirmed by many people here.
Freddd says
Hi Felicia,
I and many others find a subcutaneous injection somewhat lager than the IM as it is a time release that way, is more effective. Also much less of an ordeal. I just have a problem doing an IM to myself. Using a 5/16″ inch 31 gauge needle is a breeze. Also, I wrap the vial in foil, except for the seal, and never expose it to light. I also wrap the syring in foil before drawing. I have perfomed a series of trials and found out that a total of ten minutes exposure in a vial or 1 minute in a syring is enough to make a qualitative difference of not working on neurological issues at all since the light breaks down MeCbl to HyCbl and AquoCbl, very quickly. Some people react with acne to that. Good luck and Good health
Felicia says
Freddd,
Thanks for the info. I didn’t know about the vials and light, but did notice they come in dark glass containers so that makes sense. My next step is to get tested and then see if I’m taking the right amount of B12 weekly — since they told me it’s for life it makes sense to do a follow up test (since I only had the MMA tested and never B12 serum or homostyceine) — waiting to hear back from my practitioner and will go from there. Amazing what a difference it has made in my energy levels too.
Freddd says
Hi Kristina,
If you a good methylcobalamin 1,000mcg, Enzymatic Therapy B12 infusion is the best I know of, and take 1 every day for 45-120 minutes under your upper lip, you will do far better than injections of HyCbl every now and then, even better than daily injections. It is just more effecftive. Taking a methylfolate brand can help you retain more of the b12. For instance, Metafolin by any brand is the same and the are other brands of l-mehtylfolate. Then there is AdoCbl, the other half of the active b12 duo.
Kristina says
Hi,
I have just been diagnosed with B12 deficiency today and have to have (hydroxocobalamin) injections once a week for three weeks then once a month for three months. I take Metformin which I read can be a cause of low B12, if this is true and I continue my Metformin will my B12 levels ever become normal?
Greg says
Hi Kristina,
One of the most common side-effects of taking Metformin for your diabetes is that it mucks up your VB12 metabolism. For some reason doctors diagnosing the Metformin often do not tell their patients that they are likely to become VB12 deficient.
Now there are two active forms of the VB12 vitamin in the body, one is adenosylcobalamin, which is involved in energy production from some amino acids and some fats. The other is methylcobalamin, which is involved in DNA synthesis as well as red blood cells. Unfortunately by the time you have become anemic, you can have other much more serious complications of VB12 deficiency, which you will notice in the various discussions on the blog.
Firstly, the Adenosylcobalamin deficiency will cause you to feel tired and you will muscle fatigue early. More importantly a by-product of the adenosylcobalamin deficiency is an accumulation of another molecule called MMA. Now this is really bad because it can upset the myelin sheaf on your nerves, and can cause a whole lot of nerve damage related symptoms.
The adenosycobalamin deficiency can cause an increase in homocyeteine levels, which has been associated with an increased risk of cardiovascular disease.
It is important that if you are getting VB12 injections that you get your levels of MMA and Hcy checked. Only when these levels return to “normal” are you getting enough VB12.
As long as you are taking metformin, and assorted other drugs for your diabetes, you will need the VB12 shots.
If you exercise enough and control your sugar intake you MAY be able to go off metformin if you can get your blood sugar levels down far enough. A lot of work, for some people, BUT if you look at all the nasty side effects of diabetes as far as dementia, peripheral neuropathy, and macular degeneration in the eye, you may think it is worth it. My mother decided not to listen and she now has late stage dementia, can barely see, has lost most of her teeth which rotted out, and spends most of her life sitting in a chair not knowing where she is, or what is going on. If it was me….
I can help you with alternatives to injectable VB12, but I cannot do the hard yards for you. Best of luck.
Freddd says
Hi Lan, Common symptoms of b12/folate deficiency could be some collection of common non-specific symptoms. Fatigue and tiredness, depression, lots of mysterious aches and pains, excema, dandruff, MCS, allergies, asthma, IBS, sore mouth, sore tongue, canker sores, sores at the corners of mouth, muscle pain. I’ve run across the “moons” on fingernails site. The woman writing it had very serious b12/folate deficiencies. She is sincere. I just don’t know. Those might be the only b12 deficiency symptoms I never had. Out of 400 or so possible symptoms most people never have more than 1/3 to 1/2 of them. Just starting out there is always a first handful of symtpoms. One of the things that distinguishes b12 deficiencies is the dozens of symptoms the doctors are all willing to ignore and tell you they mean nothing. There are at least 5 subdeficiencies involved and what symptoms a person has depends upon which combination of subdeficiencies they have. The very best way to tell is to the supplements. The one thing I am reasonably sure of is that people without deficiency symptoms have no responses. If one puts an Enzymatic Therapy B12 infusion (MeCbl) under a lip for 1-2 hours, 75% of those with a deficiency will have a response before the two hours. If one use a combination of 1 Enzy, and an Anbol Dibencoplex (AdoCbl) capsule emptied between lower lip and gum and at same time as MeCbl under upper lip and retains it the same 2 hours, 85% of thosw with deficiency will likely respond. If an L-methylfolate 800mcg is swallowed 30 minutes before the other two items, approaximately 90% with deficiency will have a response within 2 hours. If a 125mg or larger l-carnitine fumarate is taken on empty stomach with the Metafolin (L-methylfolate) only if a person doesn’t have anxiety,, the repsonse rate for deficiency goes up to 95%. Skin problems, behavoral and emotional and neurological symptoms, sleep disorders, all show up before fatigue which shows up only after a severe worsening of symtpoms. Fatigue is a late arrival. Longitudinal ridges in the nails can be casued by methylation and cell reproduction turning on and off and can happen with stree and illness that put a big demand on the body. My partner developed deep ridges in her big toe toenails from a 2 week international trip that exhausted her and nearly fainted during a performance.
karen says
Hi Fredd, i have found ur articles on B12 very informing and helpful i have 3 monthly injections of B12 I do not know my levels as i have never asked, i was recently put on Folic acid tablet, which i have always thought were given to woman trying to conceive or pregnant, i also take vitamin D with calcuim. I still feel very tired to the point where i cud go back to bed after only getting up from bed although i never stay asleep all night . I feel at the moment i am in pain all the time my legs and back and sometimes i cant even dry my hair properly and my arm hurt holding the hairdryer . I also suffer with dizzy spel.s I also have IBS which ive had for years i am due to go back to my doctor I have two sons one has diagnoised autism he is 20 the other one has adhd can u please give me any suggestions that i cud give to my doctor as i feel im just not feeling any better
Lan says
So what are the common signs of B12 deficiency?
I’m NOT in any of the high-risk groups listed in the article. I don’t consume alcohol other than the occasional sip of wine or beer. I’ve never had surgery. I’ve never been a vegetarian or vegan.
At 30, I’m generally healthy and haven’t got sick for a few years, even though our family has moved from one country to the next with a young child. I stay at home and work hard from morning to midnight taking care of my child, homeschooling her, making homemade food (we eat pretty much the WAPF way), reading up on various health and education topics, and working on an online certificate medicine-related program. What I mean is that I’m in general good health and don’t lack energy an my mind works pretty well. I also don’t have chronic depression.
The only thing that makes me suspect I may be deficient in B12 is my *slightly* ridged fingernails and the fact that only 5 out of my 10 fingers have “moons” on them. I came across a whole website when someone with experience in B12 deficiency said that those are signs. He also said that blood tests are sometimes inaccurate.
So what should I do? I suspect that if I were indeed B12 deficient, it is something genetic, since my mom, dad and younger brother don’t have those moons on all of their fingers as well. My mom and dad’s fingernails are also a bit ridged. My husband, in contrast, has perfect moons on all of his fingers. My 3YO daughter is like me, and that worries me, but her naturopath told me one of the first signs of B12 deficiency would be lack of energy, and that’s NO WAY true in her case.
Any thoughts or advice would be very much appreciated!
Jessie Danielle says
Thanks, again, Fredd. I apologize is this is a stupid question but why would/should I supplement if my levels are already high?
Freddd says
Because youy have symptoms indicating such I would presume. The reasons that brought you to posting at a place like this. In studies on treating peripheral neuropathy with MeCbl the averagle person receiving treatment started witjh over 700pg/ml and the highest persons receiving effective treatment started at over 1500pg/ml. More than 60% of those receiving benefit from treatment would not have qualified by any test results. They were all admitted by symptoms. As much research says, the only definative test is a trial of the b12.
Jessie says
Thanks for the input, Fredd! You got a little too technical for me at the end though 🙂
My level was 1359 so I guess it wasn’t THAT high. Boy, I thought I had been doing the right thing, supplementing with brewer’s yeast – that is, until I found this website/podcast.
I have a return appt. with the doc coming up so I’ll ask her to repeat my labs. Is there anything else I should ask her to test? Labs in the past have been pretty good although my white blood count, iron, Vit D and thyroid tests tend to run on the low normal side.
Thanks again!
Freddd says
Hi Jessie,
No need to repeat the tests. A simple trial will tell you if these things can help you. After 6 months on the b12s and stuff then the tests cou;d be run again to see differnces but you don;t need any b12 tests as you will be fully adequate and they won’t tell you anything. They are expensive. Some docs actutally say stop taking it at 900 pg/ml but there is no “too high” if you are supplementing. That would stop healing. Good luck.
Jinn says
Here is a place to order: http://www.pureformulas.com (put in coupon code DB15 for an extra 15% off Doctor’s Best or NEXT10 for extra 10% off your order. You get free shipping automatic)
Best L-Carnitine Fumarate 12.50
855 mg 60 Veggie Capsules
Best Alpha-Lipoic Acid 25.00
600 180 Veggie Capsules
B-Complex Plus (with 30.90
Metafolin L-5-MTHF) 120
Vegetable Capsules
Enjoy!
Jessie Danielle says
My latest bloodtests revealed a very HIGH level of B12. I’ve been a vegetarian (I do eat lots of egg whites) for nearly 20 years, although I did try eating meat for 1 year recently. I figured the high level was due to brewer’s yeast supplementation (I love that stuff!) and the eggs. Is there a danger w/having levels TOO high?
Freddd says
Hi Jessie, How high is high? Nrmally somebody in your situation would have a b12 serum level under 500pg/ml. A person effectively taking a 1mg sublingual could have an average serum level of over 2000pg/ml. Without supplemntation anythng above 1200pg/ml or so looks supicious. If yours is a 5000pg/ml for instance, that could indicate liver damage. When the liver is damaged it leaks a lot of b12 into serum. It is something to check out with a doctor. As the liver collects all the cobalamin it can that isn’t excreted by the kidneys, it injudes plant cobalamins, post detox cobalamins (which can contain detoxed metals that would normally exit via the bile) rather than useful cobalamins. A daily average level with 10mg of sublingual daily, might be 6000pg/ml. Brewers yeast has no useful cobalamins. Sometimes it is spiked with CyCbl which if absorbed every day mighrt succeed in keeping your serum level above 300pg/ml. If taking a suitable mix of AdoCbl and MeCbl barring CNS provlems, 15,000pg/ml more or less might be a level without any significant b12 insufficiency symptoms. Good luck.
Nana Mary says
I just found this site and Thank You. MY B12 levels have always been 200-220. Very Low Normal. Doc put me on 1ml shots bi monthly. Group Health Insurance paid for twice a year testing. Now, that I am 65 and on Medicare and a great supplement, doctor ordered a B12 serum test at Quest and Medicare would not pay for B12 testing. BUMMER! Now, Quest Labs want the $115.00 they charge for this test. They will not work with me on paying them the amount that Medicare would of paid them had it been allowed. (discounted price) So, is there anyone on this forum that is in the same/similar boat and knows where I can get B12 testing cheaper than Quest Laboratories. I am a Cardiac patient plus have malabsorbtion syndrome and need these testings. I hate being on Medicare because they call the shots what is allowed and what is not. (This is why many doctors are not taking Medicare Patients any longer) Very scary. Thank You.
Jasmine says
@Fred
Hi Fred !
i have a question regarding Adb12, since i have started taking Mb12 and Metafolin about 3 weeks now and i just added Adb12 i am wondering:
– I keep hearing about people feeling really energetic, is that how it’s supposed to feel like cause i took one pill 8,6 mg of Source Naturals Dibencozide and don’t really feel anything drastic.
– Does that man i need to take larger doses or it could get dangerous ?
– I have been taking 10 mg of Mb12 i have changed to Enzymatic Fusion for about a week, before that i was taking the same amount of Jarrow however i got very strong tingling sensation on the Jarrow brand, however i don’t really feel that with Enzymatic Fusion, could it be that my body has gotten used to the dose and i can raise it? since i don’t feel any Neurological improvement (the numbness is very much present and uncomfortable at all times)
– I have bought a bottle of Potassium Citrate, is it the right kind and should i start taking it ?
– And i JUST realized that my Magnesium is Magnesium Lactate which isn’t absorbed well. Do i still need to take Magnesium supplement ? (so i order them asap)
Thank you and sorry for bothering you so much
Freddd says
Hi Jasmine, The cofactor of AdoCbl that can stop almost everything from happening when deficient is L-carnitne fumarate (Jarrow, Drs Best both made by Sigma Tau). For the Anabol capsule I empty out along my lower lip and gum and hold it for 2 hours there. I use a 1/4-1/3 capsule worth at a time for best absorbtion. For neurological healing AMOUNT is critical. You may have been getting much better penetration of the tissues with the higher amount. Also the Jarrow disolved more slowly. You might have been absorbing as much as 3mg from 10mg. Try more and hold as long as pissible. Right now the most effective mix I have found is DOSE-1 as 10mg of Enzymatic Therapy AND 3mg of Anabol Dibenvoplex held for 2 hours together. DOSE-2 as 10mg of enzymatic Therapy. DOSE 3 as 5mg of Enzymatic Therapy and 40mg of Kirtland. That gives me an adequate push of b12 o9nto the CSF/CNS to heal the spinal nerves. The effect you mention, difference in 10mg and 1mg, appears to indicate spinal fluid is being better penetrated. I take at least 4000mcg of Metafolin before each b12 dose as it aids retention in the body and possibly transport. Timing can make all the difference in the world. Also, the carnitine. If these don’t get things going, there is another layer of supplements that might kick it off. I get an email when you respond so try try try. I had to do all sorts of titration trials to optimize things for me. Follow the clues, whatever increases the tingling and brightening of mood and energixed. I suggest startinbg the carnitone with half a 125mg cap or going with the liquid. If you have anxiety as a chronic symptoms get the Jarrow liquid l-carnitine and do a microtitration starting at 100mcg. Just ask how.
Jasmine says
Hi Fred !
unfortunately i haven’t been able to buy L-carnitne yet but i am definitely going to do it asap (obviously i am missing out some things without it). I binged on a lot of chocolate everyday since last summer and as my numbness got worse my habit got worse as well and i read Homocysteine levels can raise that way.
Since i started the protocol i can use my left hand (i couldn’t even pick up my plates with the left hand) a bit more without the awful nerve pain. However the horrible numbness/paresthesias that has covered all of my body is very much present. based on your recommendation about the “paradoxial folate deficiency” so far i have raised my metafolin to 2400 mcg and i get slightly more tingilng than before. i only kept the Mb12 for an hour but for 2 days i am doing my best to make it last 2 hrs and i get a strong headache at the end of it which i’m putting it as a good sign.
– The fact that my numbness isn’t improving or my tinglings are very limited, is it because i haven’t reached the equilibrium stage ?
so far what i take per day goes like: Source Naturals Dibencozide (8.6 mg), Enzymatic infusion B12 (15 mg), Potssium Citrate (99 mg), Source natural Zinc (50 mg), Omega 3 (2400 mg), Biocare B-Plex (1 tablet), Vitamin D
-i tried to take Vitamin E as it was one of the basic vitamins to take but it made me really nauseous and sick so i wasn’t sure if i should continue taking it, how do i know if i really need to take Vitamin E ? I’m also not so sure about Zinc either, it doesn’t make me feel sick but i read people talking about it’s relation with Copper and it freaked me out.
– I never took any supplements with Folic/ Folonic acid, would it be possible that i have “paradoxial folate deficiency” even though i never took anything with Folic acid? my diet was and still is very high in vegetables, do i need to limit them ?
– And what is “Anabol Dibenvoplex” ? is it a different form of B12?
Freddd says
Hi Jasmine,
Anabol Dibencoplex is a brand of AdoCbl,(Some say more effective, some say similar to Source Natural Dibencozide) the other half of the b12 equation. They are both 10mg. Don’t let that bizarre 8.6mg becasue of masss of Cyanocobalamin, be your measure, They are each 10mg of AdoCbl. It is for energy and healing. Vit E is one of those essential vitamins. Most of the vitamins need to be taken with a meal or they cause stomach upset. You may bneed a lot more potassium. Many people need 20-30 tablets a day when healing has an intense startup. Stomach ache can be a symprtom of an induce deficiency of potassium.or of metafolin. See the listing of the symptkms above .A multimineral is a good idea so you get all the little things like copper. Selenium 200mcg helps deal with mercury by combining with it. Folate insufficiency can can occur from 200mcg of Metafolin which isn’t enoiugh to keep all the healing going that it starts. Vegetable folate can cause the paradoxical folate deficiencies in some peo[le. Don’t worry about it. If you do have it, it will become appraent as you continue. GOod luck.
Freddd says
HI Jasmine,
Using sublingually 5mg sublingual can easily equal a 1mg injection, the typical size. However Greg makes agood point. More can help bring up up to a satisfactory level more quickly. However, the purpose is to get healing going and a more balanced approach with the other 3 essentials and awareness of the induced deficiencies that will happen. So do it intelligently, not like a party drug.
Freddd
Jasmine says
Hi Fred,
– Does taking Metafolin raise Serum Folic Acid levels by any chance? Since i’ve started the protocol it seems like that my Folic Acid levels have increased! Should i be concerned about that?
– My startup effects have been very minor and i’m worried about that, i get a slight tingling here and there, got headaches when i started to keep the Adb12 and Mb12 for 2 hrs, and muscle spasms. However now it feels like i’m not even getting that much effect from my 10mg Enzymatic, 10mg Adb12, 400mg Potassium and 1600-3200 MCG Metafolin (+ all essential vitamins).
Seems like i’ve hit a plateau and i’m absolutely clueless how to get thinks start working again 🙁
Thank You
Freddd says
The headaches can be from not enough potassium. I have needed potassium between 1200 and 3000mg at various stages of healing. 400 4 times a day may get rid headches and muscle spasms. When you get these corrected then we can see what is next. My first clues are muscle spasms in my thight or occasionally calf or foot, screamingly intense in the middle of the night when relaxed. After all these thing get balanced out then we look at what isn’t being affected and take the next steps. A lot of healing happens over about a year and can continue for 5 or more years. It’s a matter of finding what else is needed. After the headaches amn spasms get taken care of then more healing can happen. Be In Good Health.
Jasmine says
Hi Fredd,
I see ! thank you for the explanation,
could you please let me know what you think about the increased blood folic acid level?
Does it affect the B12 absorption?
Greg says
Hi Jasmine, the energy boost that most people have is really following VB12 shots. In Europe and many parts of S. America they shoot up Adenosylcobalamin as an energy boost, almost like a party drug. The reason that you probably are not getting this is because oral tablets only get a tiny amount of VB12 across at any one time, so it is not enough to raise your serum levels by any significant amount once you are vitamin B12 deficient. They are OK if you have normal uptake to maintain levels but our calculations show that they are not enough to significantly raise your levels and certainly not enough to give you the energy boost. For that reason we have developed a rub-on lotion containing vitamin B12 in it. We have received wonderful responses from the few people that have tried it, who report getting the energy boost. The advantage with the rub-on lotion is that once the material has penetrated into the skin it persists for hours and hours and allows your body to start loading up on the vitamin B12. Preferably you should still keep applying the material daily until your levels reach normal (which should be above 300 pmol/L).
You can find out further about deficiency states on a complementary web-site to that of Chris’ at
http://www.mentorconsulting.net/VB12Home.htm
I have worked on the uptake of VB12 for many many years, and our data definitely suggests that whilst you can maintain levels with oral supplements it is almost impossible to restore your levels to normal with them. Your situation with metformin makes it even harder. It is one of the diabolical problems with metformin use that is generally not told to patients who start taking the drug. There are so many serious problems with long term vitamin B12 deficiency that you should get it sorted out ASAP.
Deb Hickey says
I was diagnosed over 5 years ago, to this day I have to give myself the weekly injections 1mg of Cyanocobalamin B12 along with a daily supplement of sublingual 1000 to 5000 mg of methylcobalamin with folate, an supplement Iron, and a good multivitamin.
Just a few months ago my these are current results.
Component My Value Standard Range Units
VITAMIN B12 630 254 – 1320 pg/mL
METHYLMALONIC ACID: 138 87 – 318 nmol/L
I am still, knock on wood, thanking God and for the most wonderful nurse in the world for giving me my life BACK!
I have come along way and wish more people might consider, “Thinking Outside the Box”. Not the answer for all, might help many. A link to my story below, no seen in all of the US and over 76 Country’s.
http://www.youtube.com/watch?v=CH-N3ktF25g
Nathalie says
Hello Chris,
I have Crohns Disease (Ileal Terminal). I had some blood tests and my gastro told me I was iron deficient. I’m not suprised.
I pushed a bit to have my B12 tested. She prescribed a blood test for B12 and Folate, but obviously without testing homocysteine. Does it make sense to do the blodd test for B12 only ?
Thanks a lot
Christine says
Current age: 48
Cholecystectomy @ age 24 while 6 months pregnant with first child
Total Hysterectomy @ age 29
Hypo thyroid diagnosis 21 years ago (oddly after a very significant and quick weight loss)
Hashimotos diagnosis 10 years ago
Multi modular goiter, thyroid cancer & total thyroidectomy (2 parathyroids lost as well) 3.5 years ago
B12 deficient:
req’d injection weekly for past 3 years, I did not respond or absorb well sublingual or “pills” level finally “up” just inside of normal. Insurance will now not cover injections….
Vit D deficient for past year. 2,000 units a day
Numbness tingling right side ruling out MS…right now not sure what or why possibly due to the herniations both neck and lower back, disc degenerative disease (going on 12 years now). (2 serious car accidents 1995 & 1999)
Hospitalized Dec 2011 13 days with double pneumo Took me better part of 2012 to recover.
TSH/T3/T4 levels still failing to level….either extreme hypo or hyper. Doc wants me in “hyper” range due to cancer (?). Bloodwork every 90 days. Meds adjusted to levels and symptoms. Synthroid 175 with cytomel 5 every other day. Exhausted but can’t sleep.
Borderline “pre diabetic” tho #’s better since coming off all the prednisone, inhalers etc.
(Hospitalized) Diverticulitis 2008 & 2010 – “IBS” diagnosis for as long as I can remember
Eat this don’t eat that…..take this don’t take that…
My body, my system is so significantly out of whack…… Trying to find balance or some way to help myself.
Lack of energy despite “hyper” attempted state, digestive upset, insomnia, skin, nails, hair dry dry dry.
Excessive pain…muscle/joints
Burning, tingling, numb sensation that seems to come and go
Also seem to pick up every bug my 5 kids (and friends) walk into the house with.
Is this, could this, be all related?
Sincerely,
Lost, tired and bewildered
Freddd says
Hi Christine,
Yes, these can all be related to the complex of vitamins, the Deadlock Quartet. These are four fundamental nutrients deficiencies that together can cause symptoms in every system of the body of the type you describe, ALL of them and then another few hundred.
Use the correct brands of the MeCbl, AdoCbl, L-carnitine fumarate and L-methylfolate (and potassium), with the usual A, D, C, E , magnesium, omega3 oils etc and you would have a good chance to be substantially healed in a year. Read my posts to Jasmine above yours to see the details. Good luck
Freddd says
I wanted to make one comment, SOme people still in the active phase of Hashimotot’s thyroiditits havehad it stabilize or reverse with these nutrients. Howver, they also mistake the startup of methylation and of ATP as increased thyroid activity. The b12./folate changes happen fast on startup. Thyroid hormone levels change slowly. Trying to “even it out” on a daily basis doesn’t work and just confuses your body.
JayJay says
Hi Freddd
I find it very difficult to comprehend large amounts of information at once. I’m very interested in following your protocol and have attempted to sign up to Phoenix Rising. Would you please help me? I don’t seem to have permission to post or do anything.
Freddd says
Hi Jayjay,
You have to get a name and password account. Then you can post. The first handful of posts go through a moderation process making sure you are not a spammer and can take a day or two to appear. Also, if you click on a persons name, instead of taking you to messaging it tells you that you are not authorized to edit that page (the persons profile). I hope that helps. Tell your story one place or another that looks appropriate. And then wait for the moderators get to it.m Good luck.
Jasmine says
Hello!
I really think i need some outside opinion on my case, so please bare with me.
Starting last last year around this time i got numb tips of fingers within few months it became my pinkies and the side of my arms which led to numb big toes. apparently in May 2011 i was diagnosed with Low b12 based only on Serum test (however no one mentioned the importance to me and was left untreated). I have suffered from fatigue for as long as i remember, and had nerve pain in my left arm which hasn’t appeared for about a month now, my skin looks yellowish and doesn’t have a healthy glow, have a hard time functioning with my left hand, struggle with depression and anxiety.
On October 2012 my numbness started spreading much faster than before…i can say most of my body has decreased touch sensation (i can however feel pain and temperature just fine).
few days ago the stronger numbness reached my toes to buttocks, and most of my arm as well as most of my face is quite numb. i do feel weaker however apparently my power hasn’t been affected. the blood test i did on Oct 2012 showed very low vitamin D it was 22 nmol/L , i’ve been border line Iron deficient but my B12 seemed fine…which i started questioning after researching online.
I have upped my Mb12 to 10 mg per day so far i take Metafolin as well as Vit D3, E, Omega 3, Zinc, and Bio Care B-plex. I have avoided animal products, specially red meat for the most part for the past 5 years or so, i also suffer from IBS and the low B12 only showed up when i was at my worst.
My numbness didn’t stop spreading after taking the Mb12 which i started about 2 weeks ago which is freaking me out. However i do get tinglings all over as well as muscle spasms everywhere.
My MRI came out clean and my douchy neurologist told me that what i have will get better on it’s own, but it’s not and it’s getting worse by the day.
My question is have you guys seen someone who had progressive numbness caused by B12 deficiency ? The reason is that all the cases I’ve read about has been about numbness only in hands or feet, or just patchy areas that didn’t progress. This is really worrying me and i would like to know if i should see more neurologists?
and if it is B12 deficiency that has caused this, does it take some time before the numbness stops spreading?
sorry about the long post
thanks a lot in advance
Mary says
Jasmine,
Did you get a chance to watch the video in the post one or two posts above yours? I think they had people with progressive numbness in it. I would watch it. Also, I have IBS and I have found great relief following a paleo diet.
Jasmine says
i see…no i had missed it, i will defiantly watch it though !!
honestly for the past few months i have felt like an insane person, my neurologist told me don’t worry you are not paralyzed yet, and my GP said everything MIGHT BE low vitamin D.
But i know it has to be more to it than that and i’m assuming that my Low B12 from 2011 and perhaps maybe even before that was never treated considering i don’t consume that much animal products and never supplemented either.
just knowing that the progressive numbness is a Vitamin B12 deficiency it would give me hope and maybe i will stop feeling absolutely insane thanks to my doctors and people around me.
Kaytee says
Jasmine, if you are still having problems with IBS after starting b12 treatment then maybe you would do well to have your stomach acid level checked – You will see mention of this in the video. If you have low stomach acid or no stomach acid (hypochlorhydria) then you cannot absorb many things properly, calcium and b12 being just two. The test in the UK is a salivary test (I don’t know where you are) by Acumen Labs and it’s called the VEGF. You also tend to find people with low stomach acid also have a problem converting D3.
Mary says
Kaytee is absolutely right. I have low stomach acid and I sometimes take HCL. I have been diagnosed with malabsorption. I highly recommend reading Practical Paleo – even if you don’t want to follow the paleo diet, the first 150 pages or so is all about digestion, leaky gut and absorption and is a good read to learn about all this. My vitamin D was 11 and my B12 was 222 when I was diagnosed. I now take 10000IU vitamin D liquid (D3! not D2) daily and get B12 shots biweekly. If you want to chat privately about all this I would be happy to.
Felicia says
I too do B12 shots biweekly — do you give them to yourself? And I was wondering if you monitor your B12 levels once you are on the shots — I haven’t had my levels tested since I started a year ago, and was wondering if it’s a good idea (although since mine seems to be pernicious anemia, I might be on them for a very long time……). Shots make a huge difference for me (methyl B) and my D is way better than when I started (started at 40, now in the 70s). I too have numbness in my left pinky and fingers, but was never sure if it was the B12 or something in my neck…..still figuring that out, but good to know it might be a B12 issue too.
Mary says
Hi Felicia,
No, my husband gives them to me. I could probably give them to myself in the thigh I guess but DH is a great shot-giver. Where do you get your methyl shots? So far I cannot find a compounding pharmacy and I have been using cyano. I get my levels drawn once every three months. I too seem to have pernicious anemia. My diagnosis was at 222, I took shots once a week for a month, then once every other week for a month and I was up in the 600s, but then she put me at once a month and I went down, so now I just do every other week as a sort of compromise. I cannot seem to get my D above the 50s though. UGH. What brand are you taking?
Felicia says
Mary, I get the methyl through my naturopath, who orders it from a pharmacy in Washington State (I’m in CO). And I do them in my thighs, which took awhile to get used to, but are easy now. Do you go to a naturopath or another practitioner? They didn’t actually test my actual B12 levels but other levels in my blood — and so based on that I started a trial of B12 and haven’t stopped because the results have been so great (energy mostly). Not sure what helped the D — maybe because I was taking fish oil too, but I know I was taking D as well (not as much now). It took awhile for the levels to get up there. I currently take Carlsons drops but I was taking something more potent before.
Jasmine says
I live in Sweden, Actually *knock on wood* my IBS issues have subsided for a while now (my B12 showed up low on the serum test when i was at my worst) since a while back i went on an intense Candida diet which i don’t follow anymore. However the numbness is the symptom that is bothering me the most and the fact that it has started spreading so fast concerns me.
I’ve done a lot of research online and somehow hasn’t find a case that mentions progressive numbness. knowing that i’m not alone would give me some reassurance that i’m on the right path.
Mary says
Well, even if the numbness wasn’t related, which it surely IS, you have to get those b12 and vitamin D numbers addressed.
Jasmine says
Sorry if my question seems very obvious but i’m geniuinly wondering, It probably has taken me a long time to get to this stage (the initial numbness started around spring 2012).
Am i being unrealistic to expect a change anytime soon ? Or should i give it a few months on high doses of Vitamin B12?
(how can i reach you since you mentioned chatting?)
Freddd says
Hi Jasmine,
My case was both peripheral neuropathy and the central form, Subacute combined degeneration. I have regained a lot of neurological function, can feel most of my feet, have decent balance. At one point I was falling and close to a wheel chair. That is why tjhe BRANDs mentioned are so critical. They are the only ones that so far are predictable at this present time. Good luck. You may have to order from the USA.
Freddd says
Jasmine,
You sound like you have paradoxical folate deficiency. Perhaps there is folic acid or folinic acid in the bioplex b-complex or some other supplement(s). You need to be on the 5 star MeCbl, Enzymatic Therapy B12 infusion. and hold it for 2 hours under your lip. You need as much absorbtion as possible. 10mg of ENZY could produce 3mg absorbed in 2 hours, having a superior effect to most injections of that size. Also, you may need to titrate the L-methylfolate until the folate deficiency symptoms go away. Also, for full effectivenss you will need AdoCbl (the mitochondria b12 , allows tissues to be made and makes ATP for energy) and L-carntine fumarate, with microtitration if you have anxiety. Those 4, the Deadlock Quartet, turn on multiple levels of healing with very great success. Potassium needs to be titrated by effect and it may trade back and forth between potassium and l-methylfolate until an equilibrium is reached with all the needs for bboth satisfied. The combination of the 5 star AdoCbl and MeCbl, the other two of the Quartet, potassium, zinc, D etc, also needs 2000mg of active components Omega3 oils.
Also, folic acid, folinic acid, glutathione, NAC and Whey need to be avoided. They can cause problems such that the nerves will be further damaged instead of healing.
Jasmine says
Hi Fred !!
i have been following your protocol and so far i’m waiting for my Adb12 and Potassium package to arrive. I would however like to ask you some things that has made me confused.
-so far i was taking 10mg of Jarrow just because i couldn’t return them but now that i am switching to Enzymatic Therapy B12 do i still need to go up to 50 mg per day?
-how do you know that you have reached equilibrium? is it when you don’t have any unpleasant symptoms anymore?
-is there a limit for both Potassium and Metafolin that would make it dangerous (i’m assuming it’s the same as l-methylfolat?) ?
Thank you so much…all this info means a world to me
Freddd says
Hi Jasmine,
Unfortunately the Jarrow ceased being effective at some batch change point about a year ago. Unfortunately for me it wasn’t fully apparant till I had a relapse in August. At 5mg a day after you add the AdoCbl and titrate the potassium as needed with the Metafolin, and sometims the potassium and Metafolin alternate for a few rounds of adjustments. Then the l-carnitine fumarate needs to be added in. With Omega3 oils etc a lot of healing can happen on 5 levels and maybe 6. The 6th is the CSF/CNS level and if there is a problem getting enough into your CNS for healing, then a 50mg continuous dose of ENZY over 4 hours or so will be a real eye-opener. Each time you notice an effect in the CNS from that you are not yet at equilibrium. A 50mg dose of AdoCbl can also be tried. Because that lasts ever so much longer in the mitochondria you may find that you only need to repeat that one once a month to maintain CNS AdoCbl equilibrium. As long as a 50mg does causes a noticable change, you are not maintaining equilibrium. Some people need that dose once and some need it 3 times a day for healing, less for maitenance. Typical levels of Metafolin for adequacy (no folate insufficiency symptoms) are 800-2400mcg for those with no paradoxical folate deficiency, 6000-8000mcg for folic acid only paradoxical folate deficiency, and 12,000-30,000 mcg of Metafolin (Deplin at 15mg) for folinic acid-vegetable folate paradoxical folate deficiency. The ammount of supplemental potassium is achieved by titrating to effect, usually 2000-3000mg above dietary intake daily for somebody with widespread healing. Equilibrium is reached when the 50mg doses doesn’ty repeat immediate effects and the nerves heal 24 hrs per day. Body equilibrium is reached when a 5mg larger dose makes no noticable difference. MeCbl and HyCbl each have their own body equilibrium and their own CNS equilibrium, 4 possibilities in all.
Jasmine says
wow…thank you so much, that helps a lot and clears up so many of my questions!
i have been reading a lot of posts on Phoenix Rising and one thing i’m not so sure of is
– what kind of signs or symptoms should i be looking out for while titrating Metafolin and Potassium? i’m imagining it can’t be too subtle?
– is there a specific l-carnitine fumarate brand that you would recommend or any of them work just fine?
Freddd says
Hi Jasmine,
L-carnitine fumarate, Jarrow or Drs Best. Both are made by Sigma Tau in Italy. I would expect other brands of Sigma Tau would work. Also the Jarrow liquid freebase carnitine works well. The capsules are fine for most with a titration starting at 62.5mg (1/4 of a 250mg capsule. If you have anxiety, “Tolerance withdrawal” from benzos, panic attacks, go with the liquid form and microtitrate. Start at 100mcg. That is put 1 drop into a small container. Add 100 drops of water (there is a conversion to CC or teaspoon) and take 1 drop of the diluted solution 3 times a day on empty stomach. Keep in refrigerator until after third dose of day then discard. Increase by 1 drop a day until it becomes too stimulating which converts easily to anxiety and worse for some people who tend to anxiety. It’s how the brain is wired and affected. After you get up to 3 drops 3x per day you can drop to 33 drops to 1 and mover back down to 1 drop. Again, you can keep increasing by 1 drop per day. It’s proportional. When you get to drops per dose, you can increase by 1/3 to 1/6 per day usually with no noticable effect until you reach a threshold of effectivess, then slow down. Each drop from the stock bottle is 3.3mg, 3300mcg. Eventually you work up to the 66mg or so daily dose you can switch to capsule powder. At that point 1 dose a day is usually sufficient without problems.
The effects of low potassium and Metafolin ARE NOT SUBTLE. I will post those in a separate post coming up.
Freddd says
1 – Low potassium, almost everybody when healing starts. – often called “detox”
2 – Low folate symptoms even with small doses of Metafolin – often called “detox”
3 – Nervous system activation, everything is perceived as more intense – often called “detox”
4 – ATP activation, everything is more energetic and intense – often called “detox”
Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.
Group 2a – Both
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Group 2b – Either or both
Headache, Increased malaise, Fatigue
Group 3 – Induced and/or Paradoxical Folate deficiency or insufficiency
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
Group 4 – Hydroxycbl onset, degraded methylcbl onset, methylcbl after photolytic breakdown onset.
Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
Jasmine says
Wow !!! yeah i would say that is not subtle at all
i could be over thinking all this but:
– you mentioned that “At 5mg a day after you add the AdoCbl and titrate the potassium as needed with the Metafolin” does that mean after i added those two then i start raising the Mb12 slowly until i reach 50 mg per day, then raise metafolin and potassium after i’m at 50mg of Mb12 ?
– Since the Enzymatic Therapy B12 only comes in the form of 1mg pills do i need to take 50 a day? Or is there any other brand that i could add to the mix since Enzymatic Therapy has only 30 pills in a bottle?
– considering how my case sounds like “paradoxical folate deficiency” (if i understood correctly) i would need 12,000-30,000 mcg of Metafolin, did i get it right?
Once again hank you so much for your help and sorry that i keep coming up with random questions
Freddd says
Hi Jasmine,
Most folks reach body equilibrium of MeCbl with 5-15 mg daily sublingual dose (1-3mg injected). Most folks, reach body equilibrium of AdoCbl at 2.5mg daily to 2.5mg once a week. On one occasion, as a test, try 50 of the Enzymatic Therapy. These are extensively validated in use by thousands. I am trialing a new brands that might be quite satisfactory. Right now I am doing a month long qualitative test of it. In a month frpm now there may be a 5mg dose in a brand I can suggest. It is important to know if you have a CNS problem that takes more B12 to penetrate into the CSF. Another brand that isn’t as effective could cause a false negative response. In some people folic acid can’t be converted to L-methylfolate. In some people neither folic acid nor natural veggie folate can be converted to L-methylfolate. These unconverted oxidized folates can block 10 to 20 times as much methylfolate from being effective. In the Deplin studies (prescription strength Metafolin) 15 and 30 mg were the most effective doses for depression which is a folate and B12 deficiency symptom. Things like IBS and angular cheilitis, canker sores, acne type lesions in adults and things like that as well as mood and other problems are often indicators of paradoxical folate deficiency. Basically you can measure “high” but with ineffective folates that compete with and block l-methyfolate. However, until titrating up you don’t know if you have folate insufficiency which can happen with even pure l-methylfolate, just not enough, or folic acid paradoxical folate deficiency or folic/folinic acid paradoxical folate deficiency. That will only define as you progress.
Jasmine says
Hi Fred !
(i didn’t have the reply option anymore so i had to make a new conversation)
I see…it does make sense how it’s different for everyone to need different levels and i have a feeling i’m one of those who need high doses.
If by any chance i would want to raise it up more than 15mg, is it wise to take all of it at once ? since i keep hearing about the empty stomach thing.
if i spread them throughout the day my stomach will not be empty, does that mean the Mb12 won’t be absorbed as well ?
Thank you once again
Freddd says
Hi Jasmine,
As the MeCb;l; and AdoCbl are absorbed through the oral mucosa what is in your stomach desn’t make any difference. I take 4000mcg of l-methylfolate on rising, 4000mcg with each of 2 meals and 4000mcg at bedtime. It takes divided doses to work well. Only the l-carnitine (and thyroid meds, SAM-e and a few others) needs to be taken on an empty stomach or else it is digested and gone. The l-methylfolate is well absorbed with and without food. It needs to compete with the folic acid (white flour foods, and maybe vegetable folates) while being digested and ansorbed. Two doses per day might cause a need for twice as much. I get by on 16mg a day with timing. 30mg would probably be needed for twice a day dosing. Timing can be critical and save quite a bit of money.
Maryann says
Hello! Is there an optimal goal for B12 levels? Is there a point that you would not want to exceed? We take a supplement called Cardio B (B6 50mg, Folic Acid 5mg, B12 1mg per capsule once per day) and also a multi with B. My level is 958 and my husband’s is 1295 (results are eight months old). Thank you very much for any guidance you can provide, maryann
Kaytee says
New video about b12 deficiency. Please put it anywhere you can think of. Hope you don’t mind Chris?
Mary says
Thank you Kaytee! I’m sharing this on FB.
Felicia says
I have a question in response to this thread about the sublingual B12 vs. injections — what about the other ingredients in sublinguals? The Enzymatic Therapy B12 infusion mentioned here has both fructose and mannitol added to it, so can that also be an issue for people who are sensitive? I do methyl injections twice a week for now (for pernicious anemia), they seem to work great (did them daily when I started with this), and I get the B12 through my naturopath and a compounding pharmacy (and also I worked closely with her through the process). My energy and blood work have been significantly better with the addition of injections, but I’m always open to other avenues. I also have blood sugar issues and can be very sensitive to flavorings, so that’s why I’m asking about the sublinguals.
Freddd says
Felicia,
THe situation is this. A GOOD methylb12 injection is great. The problem I had was that there was just as much variability of the injectable MeCbl as there were between brands of tablets. Further MeCbl upon very little exposure to light breaks down to HyCbl which gives me and a lot of people acne type lesions on scalp and face and ceases being neurologically effective. I had to inject 10mg 3x per day to maintain my CNS, to keep it from the degeneration of Subacute combined degeneration. I had to wrap the vial in foil and never expose the MeCbl to light. I also wrapped each syringe in foil. It was costing me $400/month for injections that aq lot of the time were worthless for my CNS problems. Not everybody has CNS problems and may not be sensitive to the differences between various batches of MeCbl. The addittion to your program that I would expect will bring your energy all the way up and make it so you don’t feel each injection would be the Anabol Dibencoplex (AdoCbl), the other active b12 for the mitochondria and other purposes. It has no flavoring or sweetening. It is in a capsule of bland filler. For best absorbtion I use about 1/3 capsule at a time under my lower lip. The other two items that complete the Deadlock Quartet are L-methylfolate and l-carnitine fumararte. These 4 have a 4 way interdependency and with all 4 a person can start all 6 layers of healing. Then potassium is needed. These things are about healing ALL the symptoms of these deficiencies, about 400 in all, generally have not just bringing serum level up and correcting red cell size.
Good luck
Felicia says
Thanks, Fredd, I appreciate the response. For me, I have done well on injections for now, along with diet and other factors, so I imagine there is a spectrum of need and responses depending on where someone is health-wise. I appreciate all your research and sharing of information that you have discovered!
Carolyn says
I was told, once you start taking the injections, you have to take them for rest of your life. Your body only absorbs what it needs when taken in pill form.The shots affect a feedback mechanism that will prevent you from absorbing and make you deficient.
Freddd says
Carolyn, To borrow a phrase from PULP FICTION, “THEY say too much”. Not a single thing you say is correct, all mythology. A more correct statement is thgat when swallowed or chewed and swallowed, IF a person’s entire actove absorbtion system were working correctly, one can absorb about 10mcg via the active system at a meal or oral dose plus about 1% of total amount as passive absorbtion. So a 1000mcg oral tablet swallowed will provide about 10-30mcg absorbed depending upon the details of the person’s system. When 1000mcg is used sublingually, in the tested 5 star brands of methylb12 and adenosylb12, (MeCbl, AdoCbl) when tested, absorbtion is about 15-25% when held for 45-120 minutes (range 10%-33%). So 5mg of 5 star MeCbl results in 750-1250mcg typically absorbed which is fully equivalent to 1000mcg of MeCbl or AdoCbl as a subcutaneous injection as regards serum levels and effectiveness. It takes about 100mcg absorbed to “turn on healing” in the right circumstances, for almost everybody who is deficent. Oral doses of any kind and injections of CyCbl and HyCbl do not turn on healing except very rarely becasue they are not active and the body can only convert a little under the best of circumstances. Its complicated enough without the mythology. Right now Enzymatic Therapy b12 infusion methylb12 and Anabol Dibencoplex (AdoCbl) are the only two 5 star b12s I know of.
Carolyn says
“They” is a Biochemist that stated , once you start taking the injections, you have to take them for rest of your life. Your body only absorbs what it needs when taken in pill form.The shots affect a feedback mechanism that will prevent you from absorbing and make you deficient. I have been searching to see if that was true.
Freddd says
I don’t care if it is a biochemist or anything else. He is WRONG. I have used a mix of injections of MeCbl when I can find any of sufficient quality, which isn’t easy. I have used injecttions for 7 of the past 10 years. Chances are he is also speaking of HyCbl or Cycblo which is the automatic unspecified “b12”. In any case he is wrong and you can easily demonstrate it to yourself if you are response to b12. Now, being able to use b12 at all is dependent upon BOTH forms of b12 being avalable, and L-methylfolate AND L-carnitine fumarate. These 4 make up the deadlock quartet, and without all 4 of them in the body, one or two or three of the others don’t work or not fully. Further for CyCblo, HyCbl, folic acid and folinic acid to even have a chance of being converted to active forms requires the presence of all 4 of the deadlock quartet. I have cured myself of FMS and CFS and manage to hold Subacute Combined Degeneration in check. The thing that is FMS and CFS are both part of a disease group in which people having it for some reason have CNS b12 deficiencies even when the body doesn’t. It takes a much higher serum level to penetrate the CNS. A 30-50mg sublingual dose of a 5 star MeCbl is just as effective as a 7.5mg-12.5mg injection of 5 star MeCbl injected subcutanseously. Injected IM the peak of serum level passes too quickly to be well absorbed into the CNS/CSF so an SC injection can take all day to come into serum and acts as a time release mechanism while maintaining serum level over 100,000pg/ml for a high gradiant diffusion into the CSF/CNS. I have seen these same results replicated over and over. It is highly sensitive to quantity and quality of the b12 but makes no difference how the equivalent dose is prrovided; sublingual or SC injection. There is nothing but the specific pharmacodynamics of the cobalamins at work here. The mechanism you attribute to him doesn’t exist or doesn’t work that way. I’ve spent more than 20,000 hours studying all this in the past 11 years and have it down as a working demonstrable system.
Mike says
Chris,
You may wish to add that B-12 deficiency is also commonly found in people with Primary Immune deficiencies. As I have a PIDD and my immunologist told me it is common for people with Primary Immunce Deficiencies to have low B-12. I have been receiving it in monthly injections for several years now.
thanks
michal says
Fredd- do you know possibly from your own experience or from being active in a number of boards if clorella supplementation could worsen a folate deficiency? would you advise against supplementing with clorella if s/o is doing well with it but has multiple MTHFR mutations?
Freddd says
Michal, I really don’t know. If it has folic acid added to it or folinic acid (veggie folate) it could cause paradoxical folate deficiency in susceptable persons. “Green drinks” can do that. I get in trouble eating too many veggies. I have to be really careful and resist the temptation of “everything from the garden” feasts. I used to be vegetarian and had a 15,000 square foot organic garden before I got too sick (from both those things) to keep it up. Now I have about about 150 linear feet of 3 foot wide raised bed organic garden and have to be very carefull how much I eat from it.
The unexpected items that can cause an induced folate deficiency is whey, NAC and/or glutathione. That includes Cerefolin-NAC.
It is my contention that the entire set of test results concerning b12 and folate is corrupted since the endemic deficiencies of these items now control the range of results considered “normal” and the test reslts no exist to maintain the deficiencies in place because the deficiencies now define the ranges and have become “normal”. I believe that the MTHR polymorphisms do exist but that their meaning is misunderstood becasue of the corruption of all tests having to do with results from folate and b12.
Dez says
QUESTION>Am I having my first schizophrenic break (a little late in life) and/or displaying Bi-polar w/psychotic features or is it more likely my low vitamins as a result of poor diet and poor absorbtion from the gastric bypass surgery?
Posted question at the bottom too cause (I cannot be concice or spell when I’m hallucinating …Sorry 🙂 )
Here is my back-story/history:
I’m a 30 y.o. female who had gastric bypass surgery in the end of 2008. Just this past 6 months I got a check up and was defiecient in every vitamin(that they tested for.) I ended up doing Iron infusions (8 infusions 2x/wkly/1month) but my Pica is back and I just started eating Ice again yesterday. I am extremely depressed even suicidal at times, which I am a profesional working in the field of mental health (I went out of network for most psych care!!!) and out of work right now but they are holding my job awaiting FMLA/St. Term disability paperwork…. Here is the issue: I was normal (on the range of normal compared to other 30 y.o. women i’ve met) but now within a months time i’ve went from mild stress/depression (life on life’s terms stuff) to hallucinating (they are eposodic and last a few seconds i.e. tactile, auditory, especially visual) and occasional delusions (paranoia, intrusive thoughts.) My emotions are wild (i.e. laughing, crying, crying while laughing, rage, and loss of all social grace etc.) I know my B-12 is low and had 2/monthly shots but am 1 month behind for my 3rd due (my fault.) My Vitamin D is low (I was just prescribed 50,000 IU 1x/wk for 3 months) and all my other vitamins are low too. I’m under the care of a hemnotologist for the iron. QUESTION>Am I having my first schizophrenic break (a little late in life) and/or displaying Bi-polar w/psychotic features or is it more likely my low vitamins as a result of poor diet and poor absorbtion from the gastric bypass?
Posted question at the top too cause I cannot be concice or spell when I’m hallucinating …Sorry 🙂
Finndian says
First thing… you were given synthetic prescription D2 and studies show it does not keep D levels up when you stop taking the prescription. Natural D3 which can be bought at any Vitamin Store will work better and not leave you hooked on a prescription. I suggest you take the D3 as the D2 was prescribed and follow up to see when you can drop to a maintenance daily dose.
Most schizophrenics are magnesium and b vitamin deficient as are Autistics and people with food allergies that cause absorption problems. So, I wouldn’t be so confidant with that diagnosis of schizophrenia especially after a gastric bypass. Unless you stay on top of the deficiencies that you will now be plagued with you will suffer various symptoms for the rest of your life.
Find yourself a darn good alternative doctor that gives vitamin IV’s. Also get a good high quality magnesium like magnesium glycinate and see if your altered GI tract can absorb it. if not, IV and transdermal application like epsom salts baths will help. Good luck… you’re going to need it!
“A 2004 study published in the “Journal of the American College of Nutrition” investigated the influence of antipsychotic medications common for treating schizophrenia and the connection to increasing magnesium plasma levels in diagnosed subjects. The study found that during acute episodes of psychosis in schizophrenia, magnesium levels were decreased and the administration of antipsychotic medications enhanced magnesium cell levels but not overall plasma magnesium. This resulted in symptom improvement but only with the administration of medication. This study built upon previous hypotheses proposed in a 1990 study published in “Neuropsychobiology,” which noted that low levels of magnesium exacerbates paranoia and hallucinations in schizophrenia.”
Freddd says
Psychosis can be a b12/folate deficiency. When accompanied by enlarged red blood cells it was called “megaloblastic madness” and described as the “most florrid psychosis known to man”. If it is caused by b12/folate deficiency, hallucinations can stop in hours following an adequate dose of the right brands of AdoCbl AND MeCbl, possilbly L-methyfolate. However, if anxiety is present that often would indicate that a person may be hyper responsive to L-carntine having unbearable anxity, panic, anger, rage and deppression occur in order over about 36-48 hours depencing upon dose. In those people benzos and possibly anti-psychotic drugs can casue a sort of pseudo Parkinson’s or something like that. Also, get an A&D extracted form fish liver oil (Cod, Halibut, Shark). It is fully active. This matters as does getting the correct brands of natual AdoCbl and MeCbl. In the 40s or 50s, when research was still being done with liver extract instead of CyCbl, they had done a study showinf discharge of schizophrenics in 3 days of treatment with the extract. The Liver exrtract effectiveness is generally equaled by the Deadlock Quartet, AdoCbl, MeCbl, L-methylfolate and l-carnitine fumarate. You need more specific information before you attempt these vitamins because they can hit like a ton of bricks and you need to be prepared. good luck.
JJ says
Hi Everyone !!
As most of you here, I’ve regularly have checked my blood every few months during the past few years. I’ve recently discovered that I’m severely deficient in Vitamin D however my doctor also told me that about a year ago i was also deficient in B12 but said it looks ok now (yet from what I’ve read that routine blood-work isn’t really reliable). During that time my IBS was acting up and i couldn’t eat anything without getting sick so I’m not surprised. Also i have had low blood iron for most of my life which i take supplements for.
Right after that era i tried the candida diet and eliminated many many things for a while from my diet. I had been avoiding red meat long before that and looking back, around then i started getting numb (decreased sensation) spots in my body and they stay present. First tip of my fingers, side of my arms, then my big toes, lips…and now it has spread to most of my body…it’s the feeling that you are wearing a glove and i occasionally have Pins and needles again everywhere…mostly in arms and legs and stronger in the extremities. The decreased sensation is so uncomfortable that i can’t think of anything beside that and I’m extremely terrified of how fast this has been progressing recently.
My GP said that it might be my very very low vitamin d that has caused my body to go nuts (it is 22 nmol/L). I have been taking Vitamin D since October and besides my joint pains and some muscle spasm not much has improved which made me think.
-My Question is could i still be very much deficient while my levels have sorta come up and are (in the safe range) ??
– i am very doubtful in how the number has decreased since i still very much avoid most animal products?
– Does it take many months to notice the difference in not so minor cases?
Robert says
I have been taking B12 for a month but now they say
it is unavailable.. Why the shortage? What should I do?
Freddd says
Robert, Unfortunately, when only one or two brands work reliably, they become difficult to keep in stock. I try to keep 2 months ahead of my need in order to never run out. My feet go numb and my brain deteriorates 10 days after my last large enough dose of the correct brands. Nothing else does the trick. Good luck. There are a lot of online retailers that may have some of the right brands. Email the companies involved and tell them how important it is to have enough of the right brands.
Robert says
That’s where I am at.Can my Dr. tell me the kind I need? or will he?
Freddd says
Robert, A couple of other possibly effective enough brands. Vitamin Shoppe housebrand 1mg Methylb12, AOR 15mg methylb12 (most any online retailer) and Kirkland (Costco, Amazon.com) 5mg methylb12.
Mike S. says
@dolly
All of your symptoms could be due to B12 deficiency. The only way to know for sure is to try it. I’m not familiar with unicobal, but it’s worth a try if your insurance covers it. If that doesn’t work, you should try Fredd’s current recommendation – Enzymatic Therapy B12 Infusion. For either of the tablet forms, try to hold one in your mouth for as long as possible – an hour or more if possible. B12 is absorbed very poorly if you swallow it. It’s absorbed about 10x as well through the skin of the mouth.
dolly says
hi.this is dolly..
since last 2 years,once in every 4 to 6 months, I suffered from light-headedness ,accompanied by dizziness and nausea.This continued for a while-around a weak,and then would subside..the doctor gave me Vertin along with some antibiotics .In july 2012,I had a the similar symptoms,but more intense, and lasted long…this time it was also accompanied by some vision problem… swaying moment,weakness and all..it took me a long time to get better.
However since that time I have never felt completely relaxed,as now and then i have a feeling of light-headedness,severe heaviness in eyes and sometimes in head , headaches- which are not very intense ,intolerance to crowded places especially malls etc., confusion.and so many more..
The doctor gave me antibiotics in intervals which made me felt better for the time being…
Finally I checked with the neurologist.He thinks it to be the Symptoms of migraine and also recommended a B-12 test..So finally today I was diagnose with the B-12 deficiency which is 171 pg/ml..He has suggested 10 injection of -UNICOBAL and also the oral cap.of the same..(I being a pure veg.no eggs too).He thinks my B-12 level triggers the Migraine…
My concern is that all these are really the symptoms of deficiency of B-12 . and nothing else!!.I am really really confused ..since last seven months not a day of my life has been normal…I feel depressed.Once a active and energetic me is becoming dull and depressed..
someone pl. suggest…
Freddd says
Hi Dolly,
The symptoms of methylb12, adenosylb12 and l-methylfolate deficiencies overlap. Along with l-carnitine fumarate the four make up what I have been calling the Deadlock quartet since the lack of any one of them can partially or completely prevent the others from working. Lack of these 4 items can cause horrid chronic headaches. I suffered with such for decades until I healed the casues. The Sublingual brands I have mentioned on other posts when held sublingually for 45-120 minutes in combinationtion are 100 to 10,000 times more effective than any CyanoCbl or HydroxyCbl injection or series.
Victoria Stanley says
Great article. I couldn’t agree more with the need of B-12 shots, as most of the modern medical society would like to see american’s on anti-anxiety drugs. Why do that, when B-12 can be dosed for the individual according to their need per diagnosis. I’m also a fan of the methyl B, and it’s delivery ability. While I loved this important, informative, helpful article – I would love to have three resources you deem reliable to order from – if possible. Thank you again, Victoria S.
Freddd says
Hi Victoria Stanley,
You can find the Enzymatic Therapy b12 infusion (methylb12), Anabol Dibenzoplex (adebosylb12) and l-methylfolate (Solgar Metafolin) at iherb.com. RED843 as a coupon code will get you $10 offf thye first order if $40 or more (and free shipping in USA) or $5 off if less. There are other reliable retailers. This is the one I’m most familiar with. Good luck BRAND is important for these items as there is much variability from brand to brand.
robsct says
fred…you said this to me…but potassium is the only thing that I know what you’re talking about. I started about 2200 mg of potassium per day and stopped having the periodic weakness in my body. But now it is coming back sporadically. I’m having a spell right now and took another potassium pill. Should I go to 3000 mg potassium per day? What about all the other things you mentioned? I don’t have them and have no idea what they are. You said…
“So while mb12, adb12 and methylfolate titrated from very low lovels to 100mcg of a combined adocbl and mecbl absorbed and 200mcg of Metafolin, then titrate potassium to comfortable levels, ie 2000-3000mg daily in 5 doses or so. Also, Metafolin may have to be adjusted to anywere between 800mcg and 30mg depending upon a person’s specfic genetic needs for types of folates. Many people have paradoxical folate deficiency. After this intial balance is attained and reasonaby stable, other vitamins adjusted as needed, then a very low and slow titration of L-carnitine of the right variety and amount. If you prefer to think about things differently than this, that is of couurse your choice. I’m merely offering my best right up to the bleeding edge hypothesis. Good luck.
Fred”
Freddd says
Hi Robsct,
Those other things are the vitamins you are missing. When they cause healing to start, potassium drops through the floor. That is the reason for taking potassium, to go with those other things. If you were already low on potassium then watch out when you start these vitamins. The best brand of methylb12 is Enzy,atic Therapy b12 infusion. The most effect brand of Adenosylb12 currently is Anabol. Metafolin under any of several vitamin makers is l-methylfolate. These cause all sorts of healing and get the energy of the body working. l-carnitine-fumarate helsp produce energy and restore muscles to normal. They can be ordered from many different online retailers. If you go to iherb.com and use the coupon code RED843 you will get $10 off your first order if more than $40 and otherwise $5 off. The prices and service are good. They normally carry all needed products and deliver in much of the world. Good luck.
Jan says
Help. Since I can no longer give myself shots and I have had no luck finding sublingual methylcobalamin, I ordered it from drugstore.com. It is microlingual, 5000 mcg, brand of Superior Source. I looked into the company and they seemed ok. However when it came in the mail today, and I bought two bottles of 60 each, the pills are tiny, ie: micro, and that part is fine. But, the bottles are full of fine powder, and the pills are crumbled up. The majority of them, in both bottles, are not whole. The cotton that was in there to “protect” them is not white but dark pink and completely full of the powder. The powder is really fine, almost like ink toner for a copier. I am so upset. Is this how this is supposed to be? I left a message with the company that makes it and will call drugstore.com, but is this how this is supposed to look? I am low 200’s and need my B12.
KT says
Cheese and eggs are both good sources of B12, so why does this article keep mentioning “vegetarians and vegans,” as if they were the same thing?
Freddd says
Hi KT,
I suppose “good sources” is subject to definition. While there is some evidence that the b12 in eggs is difficult to absorb for unknown reasons. Even if it isn’t I would have need about 20 eggs a day and a pound of cheese to supply a survival amount off b12. In any case I was a vegetarian eating eggs and cheese, almost every day, and I went downhill from day 1. Eating a “normal am,ount of eggs and cheesen each day is b12 starvation, maybe not as fast. A few people can get by adequately. But then, how many and how severe is an okay level of unwellness in the form of non specific symptoms to tolerate. They creep up on you. Besides, if a person also happens to be vegetable folate intolerant the more veggies they eat the sicker they get and no amount of b12 will overcome that.
Clams, oysters and liver are good sources of b12, red meats are medium, poultry is low medium and dairy products and eggs are pretty poor sources in practice. They are the worst that have any b12 value at all. Insects and worms are decent as well. Also, meats have active folate, l-methyfolate in the tissues as well as carnitine and both forms of active b12. Fish has omega3 oils that also help in the healing as well as low levels of b12. I believe a good balanced diet is usually the best bet, taking account of individual sensitivities. Intestingly, once b12 deficiency gets started it often causes a nutrient specific anorexia towards foods that contain b12.
Veronica says
I’m planning on having my serum B-12 tested. However, I was already supplementing with sublingual methylcobalamin. Will this skew the test results? If so, and currently not taking any now, how long should I wait (i.e. a couple of days, weeks, or month even) to have this test done?
In the interest of money and because sublingual methylcobalamin is said to be very non-toxic in even large dosages, I decided to circumvent having my B-12 level checked by just taking a B-12 supplement. I clearly had and still have a great many of the signs and symptoms and even some of the conditions caused by a B-12 deficiency. Unfortunately, this didn’t seem to be of much avail to me as I haven’t really noticed a difference in how I’m feeling or functioning. However, if I haven’t noticed really any difference in how I’m feeling or functioning, I’m wondering two things — if I was already sufficient in B-12, or if, because of malabsorption issues, I need the methylcobalamin injections.
If someone could please get back to me regarding this, I’d greatly appreciate it. Thank you.
Veronica
Freddd says
Hi Veronica,
The active b12s cvary a great deal as to effectiveness. Right now I know of one 5 star methylb12, Enzymatic Therapy b12 infusion. Hold it under the lip for 45-120 minutes for 15-25% absorbtion. Then there is the other active b12 adenosylcobalamin, AdoCbl, Anabol Dibencoplex is the 5 star brandin that. Again, I use 1/4 to 1/3 of a capsule again between my lip and gum for 1-2 hrs for good absorbtion. Futher there are l-methylfolate and l-carnitne fumarate both of which can deadlock b12 grom working if they are lacking. The 4 of them, the deadlock quartet, will notmally start up healing in 3 days requiring addiotnal potassium and l-methylfolate. Also all usual vits and minerals and omega3 oils are needed or something else will run out right away. Any brand will rsaise your serum level. Some brands used properly woll actually work for healing.
Liz says
Hi All,
I would really appreciate an answer. I am 36 years old and have had Hashimotos since I was 17 years old. In the past two years I have been getting tingly feet with toe numbness. I had an EMG that showed “severe sensory neuropathy”. The EMG did not show a pinched nerve, however an MRI showed that I have several, between 8-10 bulging discs, some pinching nerves. I have had blood work to test for Diabetes, though it’s doubtful as a FBS test a year ago was good (88). My TSH is slightly elevated and I have a goiter (I take 125 mcg Synthroid). My B12 level was either 312 or 320 (can’t remember what they said). I am now on B12 shots. I have no pain in my feet, simply numbness and tingling. I get online and read and read and then I see forums talking about HIV and sensory neuropathy and I get panicked (I have OCD also), even though I am married/monogamous and am not an IV drug user. Can the slightly elevated TSH, the B12 level, the back issues cause the severe neuropathy in my feet? I feel like the information is so conflicting!
Debbie Inglis says
Do you know of any study that shows B 12 injections working for people who have esstenial temors?
robsct says
Since starting B12 injections in October after a while I started to have bouts of extreme weakness in my legs and I noticed I was peeing all the time and could not retain fluids. Drinking Gatorade and Pedialite seemed to help. I have not been taking extra potassium because I’m afraid too much of that will run up my blood pressure. But I’m wondering if this is the problem as I am having increased episodes of weakness and it seems to be linked to dehydration which can be low potassium causing that. I first had the weakness when I became dehydrated on days I would take a water pill. I’ve had to stop taking any water pills and I have kept losing fluid. Now I’m having bouts of leg weakness and feeling dehydrated anyhow. Any thoughts from Freddd or anyone? I’m going to increase my potassium until I start retaining some water again but I have the potassium gluconate kind and I saw freddd said to use the tartrate kind. What’s the difference?
Paul says
Potassium LOWERS blood pressure if it is high or just normalizes it. It is the shortage, not the presence, of potassium combined with too much sodium that raises blood pressure.
robsct says
Thanks Paul, I was way off on that. When I read your post I did a search and read up on it and I was way off the mark there. I’ve been starving my body of potassium and I bet that’s what’s wrong with me now.
Crystal says
A month ago my dad was completely healthy and then out of the blue he started showing signs of dementia. Forgetting what day and time it is and confusing day and night all together.He has been overly tired. He always complains now about being cold. The hospital diagnosed it as dementia but I got a call today that his levels of B12 are a little low and they want to do weekly injections for a month. Would his levels being just a little off explain everything or is there still a real chance it could be dementia and the shots will not help at all?
Freddd says
You will have MUCH better success possible with the right brands of sublingual MeCbl (Enzymatic Therapy B12 infusion), AdoCbl (Anabol Dibencoplex used as sublingual, 1/4 cap), and L-methylfolate. An extremely cautious titration of L-carnitine fumarate could make day and night differences. The reason why all four are needed is complex but amounts to each is dependent on the other 3 for their functions. Being COLD puts it squaraely on those 4. You MUST have potassium on hand, often 2000-3000mg a day to take care of induced hypokalemia on the probably 3rd day after starting. Titrate to effectiveness. I find the potassium gluconate easiest on my stomach. One study esteimated that more than 40% of dementia is from b12 deficiencies. If it is b12 lack it can reverse in hours to days. Some people need to take more than one tablet to get it into the brain.
Veronica says
Is it safe to take methylcobalamin, if I have mercury exposure/ poisoning from amalgam dental fillings? I heard that methylcobalamin could just cause the mercury to further spread throughout the body. I’m thinking about getting my amalgams removed, and am not sure if supplementing with methylcobalamin — before or after I get them removed — could be detrimental.
Freddd says
Veromnica, Yes it is safe taking MeCbl. 80% of the symptoms of mecury toxicity are MeCbl deficiency sympoms becasue it destroys MeCbl. Start with selenium that locks up the mecury, then after a few days start The Enzymatic Therapy B12 infusion, holding for 45-120 minutes under lip. Also the Anabol Dibencoplex (AdoCbl) the b12 for the mitochondria (energy and mood), anti-inflammation and healing nerves, L-methylfolate, the leve of which has a lot to do with how thorough the healing is, titrated by effectiveness, usually between 800mcg and 15,000 mcg daily in divided doses, depending upon how well you can utilize other folates, and then l-carnitine fumarate, the other half of the energy equation. Thes 4 items have mutual 4 way deadlock. Each is essential for the full performance of the others, or even any performance. The amalgams will have to be replaced as they age in any case. They have a limited lifetime. Let yourself get all healed up so they don’t make any difference. If you start the Deadlock Quartet of supplements you need to know more first to do it safely becasue they cause hypokalemia because they get so much cell formation going, so much healing. Brand and certain cautions must apply for the carnitine. Most people know within an hour if the b12s they have are effective. Over a number of years the MeCbl will help clear mercury from your body.
Veronica says
After coming across this website and doing extensive research on vitamin B-12, I decided to supplement with it. For about nine months, I supplemented with it in its sublingual methylcobalamin form. I started taking just one 1mg. pill once daily, then titrated the dosage, taking three 5 mg. pills daily. Unfortunately, this has been of no avail to me. I even started taking methylfolate sublingually with it. Though I strongly believe that I have hypochlorhydria/ achlorhydria, I’m wondering if its possible that I’m not assimilating the methylcobalamin even in its sublingual form. On the other hand, I’m wondering if perhaps I don’t have a vitamin B-12 deficiency. Should I consider methylcobalamin injections? Though I never actually had my B-12 level checked, I do have reason to think that I may be suffering from a vitamin B-12 deficiency.
Mary says
Why not just get your level checked (making sure to ask the doc what the number is. Disregard what he/she says about whether or not it is normal.)
Veronica says
Hi Mary,
I’m planning on having my B-12 level checked. It may be that I’m not deficient in it. But, at least I’ll know for sure one way or the other. Do you happen to know if methylcobalamin injections are any more effective than sublingual methylcobalamin supplements? According to many sources, they appear to be equal in terms of efficacy. I know oral (non-sublingual) methylcobalamin are the least effective, but wonder if perpahs B-12 injections might be more effective for me. However, at this time, I will be sure to just get this checked. I’ll have to do this anyway, if I want to try the vitamin B-12 injections. Also, do you happen to know, if having no moons on the fingernails is sign of a vitamin B-12 deficiency? I read this on the Internet, but can’t seem to find any studies done to back this claim up.
Well, thanks for replying to my message.
Mary says
Hi Veronica,
I don’t have the answers. I cannot get methylcobalamin injections here, but my doc is working with a compounding pharmacy to try and get them. I was taking the Jarrow Sublingual Methylcobalamin recommended previously by Freddd, but he recently said that Jarrow is no longer a good brand for it. I think that might be why my levels, even with daily 15000 iu sublingual methyl b12 AND weekly cyano injections PLUS a b complex were not raising my levels more than a few hundred points. Supposedly there are b12 supplements WITH intrinsic factor, but I havent seen them yet. It may be that no oral b12 will work for people like us. I don’t know.
robsct says
Hi Veronica, I tried the pill form of B12 called Zipmelts and was using 5000 Zipmelt 3-4 times a day. I tested off the chart for B12 in my system at over 1200. I found that my body was not using this form of B12. The reason I believe this is because when I finally got my doctor to agree to B12 injections I could feel an immediate change in my body from the shots. I reasoned that if my body was using the pill form B12 there should have been no change when I used the injection, but there was. Considering all the changes in my body now I think I may have been B12 deficient all my life. Things I thought were “just me” I have found are not me anymore.
Veronica says
Hi Robsct,
Thank you for your reply.
Do you happen to know what form of B-12 (cobalamin)–cynacobalamin or methylcobalamin–that you were taking? And, if you were taking it orally was it sublingually? I ask these two questions, as, vitamin B-12, according to my research, when administered orally, is best taken sublingually in its natural methylcobalamin form. The cynacobalamin form, the most common, but synthetic, form of B-12 is what is found in most multivitamin products.
I’ve tried two different brands of sublingual methylcobalamin, and, even taking between 10,000-15,000 mcgs. (or 10-15 mgs.) for a period of nine months, I feel no difference. Hence, I’m considering getting B-12 objections as I have so many of the signs and symptoms of vitamin B-12 deficiency. Are you receiving methylcobalamin or cynacobalamin injections? According to my research, and you reaffirm this, vitamin B-12 shots are more effective than oral B-12 supplements.
I think its interesting, however, that your B-12 test results showed that you were more than proficient in B-12. Though blood tests aren’t always accurate, I really don’t understand how that could be seeing as you were already taking an inferior form, one your body probably couldn’t utilize.
But, it’s great that the B-12 shots have helped you so very much–to the extent that you even feel like your back to yourself again.
I, probably like you did, feel like something is biologically wrong with me, especially nutrition-wise. Thus, I’m hoping methylcobalamin injections might help me. I’ve been to so many doctors–psychiatrists, endocrinolgists, and neurologists–and not one of them mentioned my possibly being deficient in B-12. I also had my thyroid checked, but that really isn’t a problem for me. Hence, I think in addition to the signs and symptoms that I have of B-12 deficiency, that its very likely I could be vitamin B-12 deficient, especially since because not routinely tested in a physical examination and never suggested by a doctor to have this done, I never actually had my B-12 level checked. And, while I’ve known how important B vitamins are for the mood and mind, I always thought that just taking a good B-complex supplement would be enough. And furthermore, while I’ve heard of vitamin B-12 shots, I didn’t realize that B-12 had to be taken sublingually and in its methylcobalamin form, if not administered intravenously or intramuscularly in its methylcobalamin form.
robsct says
The injections are the cheap kind, cynacobalamin I believe. I have seen some signs of improvement but I didn’t mean to give the impression that I was back to myself again. I still have serious medical problems. I have not seen any miracle improvements and still need the Parkinson’s medication to move freely for a while. I have read that healing of the nervous system can take many months.
Freddd says
Robsct, Most brands of MeCbl don’t work well. A 5 star brand currently is Enzymatic Therapy B12 infusion. It has a strong effect on body and nerves. Taken in combination with (Anabol Dibencoplex) AdoCbl, L-methylfolate and L-carnitine fumarate, 95% of the time for people with suitable symtpoms the effects will be seen starting withiin an hour. There are 6 specific levels of healing that can get turned on with various combinations and quantities. Most brands are totally or largely ineffective. Anything you can’t makes last 1-2 hours under the lip won’t stick around a long enough to make a real difference.
Karen says
I got diagnosed with B12 deficiency although i went to my GP 18 months previous, i was tod because i was a shift worker it was lifestyle, however i was so tired and run down July this year i got shingles, 2 months after the numb tingly sore patches i was getting were consideraby worse and more painful, i went back to my GP he gave it a name and carried out blood tests my B12 level was at 100, before though i thought i was dying, i couldnt remember, lost balance, kept bumping into things and dropping things, was so tired was sleeping for 16 hours then waking and feeling like i hadnt slept then having to go back to bed, i was breathless, chest pains, joints hurt especially neck and shoulders,. I then had a 6 B12 injections and have to have them every 12 weeks, however im due for my next injection in 4 weeks and i can notice that i need another soon, im starting to feel tired again and sleeping a bit longer had to go back to bed for the first time in weeks this afternoon, i dont want to feel like this i feel out of control i get upset and tearful, it is dibilitating and people dont understand i find thats the worse when i get tired i get very tearful even at work,
Karen says
I also like to add onto this i dont have pernicious anaemia, i had blood test for this, i eat plenty of animal products red meat, white meat,fish, cheese ,eggs, yoghurts, pasta, and i also have to take folic acid tablets,
Dana says
Actually, not only can’t you get B12 from plants, but you can’t get three out of the four fat-soluble vitamins (A, D, K, E) in their final, usable-by-human-bodies form from plants, and I’m not sure about the fourth, vitamin E.
The second, vitamin D3, is indeed obtained from sunlight (the other source you mentioned), but nobody can seem to make up their minds whether anyone north of South Carolina’s latitude can do that between October and March–or possibly at other times of the year. Might explain why salmon became a sacred food in lands far to the north; sockeye in particular is one of the best dietary sources of D3.
Vitamins A and K come in their very best form from animal origins. I have reasons, though lay in origin, to believe that people are poor converters of K2. I know for a fact that people are poor converters of beta carotene, the best-known precursor of A. Two studies I’m aware of, though with a small sample size, in the U.S. and UK determined that just under half their respondents couldn’t convert beta carotene adequately. The glaring flaw other than the study size in both cases was that I don’t know if they prescreened for conditions known to interfere with beta-carotene conversion, such as hypothyroidism and diabetes. If they did prescreen, the number’s higher than 45-49% (I can’t remember the exact percentage), which means more than half the population.
On top of that, researchers now believe that the so-called established conversion ratio of BC to vitamin A, about 4 units of BC to get 1 unit of A, is too low. They think it’s more like 6:1, possibly higher. But right now people are believing that carrots or sweet potatoes are much higher in vitamin A than they might actually be after BC conversion, thanks to the federal government allowing plant foods to be labeled as having vitamin A when they don’t, or specifically the amount of vitamin A you’d get from a serving if you had optimal conversion. Which most of us don’t.
I hear Paleo people opining that they think most other Paleo people are getting too much A and I wonder, “Where in the world from?” I hope they don’t mean veggies. The Mayo Clinic says urinary tract defects are the most common class of birth defect in the United States, and I’ve learned vitamin A is important in the development of that system. Then there are all the kids with baby-tooth decay, which is blamed on bottles but occurrence is uneven in children who fall asleep with bottles. Vitamin A’s important in tooth enamel development. Then there are all the kids who grow up wearing glasses; vitamin A, of course, is well-known as important in eye development, up to and including the prevention of eye defects. And then there’s all the infertility in the adults, paired with such fun conditions as menorrhagia (a condition cured in the Third World with vitamin A supplements!).
I could go on but you get the idea. Then there’s the connection between K2 and both dental health (it keeps dentin healthy) and insulin sensitivity… well, no wonder so many diabetics have cavities.
We overestimate how nutritious our food really is, especially when we try to skate by with precursors.
Jan says
How do you folks in the US get your B12 for injection? I have had a super hard time, at all pharmacies. It is on back order everywhere. And forget the M type, I cannot even find a pharmacy that can get it at all.
Chris, I am so confused. Are you familiar with Dr. Dommisse? The mess that surrounds him, and how has this affected the thoughts on what you and all of us believe regarding B12 deficiency? I happened upon him and then upon the mess that came about because of him. Can you put some clarity on what happened there? I am having a hard enough time with the pharmacy as well as the dr.s to get medicine to combat my issues. I always drop to 250 or less unless I am giving myself injections, and when I spoke to the pharmacist today about tryinng to get the M type of injectable B12, and the fact that problems may crop up down the road should you use the other type, even though you may see help initially, she was not helpful, told me she knew nothing of any kind of studies and on and on. I don’t know what to do. This is so hard.
Jan says
Moreover, can I add that I need something more than other patients beliefs to take to my Dr.s to help me have something to fight with. I respect and appreciate all of that, but the Dr.s will not listen to that, they will not do anything based on that, and then there is Dr. Dommisse.
Freddd says
Hi Jan,
As the Enzymatic Therapy sublingual 1mg yields about 150-250mcg absorbed daily if held as liong as possible under a lip and works far better than any injections other than a rare 5 star injectable methylb12 every day, it is the easiest and most reliable way to get the best mb12. As far as opinions go, like orifices, everybody has them. What I’m offering up are the results of decades of experience in attempting to heal and succeeding starting 9 years ago, thousands of titration trials of mine and others, multi brand comparisons for effectiveness, multi injectable mb12 batch comparisons, comparison of sublingual to injection, and a whole lot more. Much of it only learnable by somebody going through this. I have sucessfully healed myself of almost everything that isn’t from subacute combined degeneration, and that is significantly in remission and holding and traumatic damage from a car wreck. As long as I keep taking the right everything, the SACD stays in remission. I had a crash relapse last summer caused by a formerly 5 star brand not remaining so. Scares me badly. Anyway, not all opinions are equal. You believe whatever you want. If that belief doesn’t have you actively healing in a month and mostly recovered in a year, change your belief and hopwe that your ridiculously low b12 level hasn’t killed you or caused permanent brain damage by then. I know what the stake are. I too am playing you bet your life. If I hadn’t found this I would be long dead by now. I would expect that with a combination of both active b12s you will be feeling very different 15 minutes after you put them in your mouth. And with the right cofactors that healing would turn on Would you be the cost of a few vitamins that could change your life, that could give you your life back, versus a treatment that is the worst possible, intermittant inactive cobalamins. I believe you can WIN and get better, virtually completely except for daily increasing permanent damage. Your doctor may believe that you will never be better than now even with the usual treatment, thats what all of mine beleived as they didn’t succeed in treating me effectively for 54 years. Believe what you choose to for your best benefit. You are the only one who will pay the price for things that don’t work or that do damage. Be In Good Health
Jan says
It is not personal, Fredd, but the reason that studies are done is the fact that people have different reactions and benefits from rememdies. If any Dr. or diagnostician took the word of patients from a website without the benefit of medical studies, they would be remiss. I can appreciate that you have been fortunate in what you have found to be the healing combination for your disease or lack of ability to properly absorb B12. However, you understand that the reasons we have this problem are not the same for all and for that reason, as well as the complications for each individuals health issues surrounding their deficiencies, you cannot just look at what worked for one person or a group of people. I don’t care how knowledgeable they are or seem. Hence, I have to have something for my Dr. I cannot go in there and say “This worked for Fredd” and him say, “Well, that is all I need to hear. If it worked for Fredd and his peers, it must be right for you”. The amount of ignorance in the medical community about this defiiciency, along with my inability to even find the right kind of B12, if baffling at best. So, believe what I choose? I cannot even find the damn vitamin to treat myself.
Freddd says
Hi Jan,
Well, You could try the the vitamines that thousands of others have found works very well. You can test the hypothesis that they work better than any injection you have had. That is testable by you. You don’t have to have a doctors ok to take an OTC vitamin. That too is your choice. The medical profession based on the research on a Nobel prize winning mistake, has taken a seriously wrong turn whrn it comes to b12 and folate. These deficiency diseases are largly manmade. When you get desparate, enough as I and many others have, you likely will try the vitamins. Fixing the problem works irrespective of the cause of deficiency which are mosrtly not repairable and most would die before they would ever find out that why they are deficient. IF insufficiency amounts to 1 or 2%. A tiny fraction to bacterial overgrowth or parasites. The rest are not from known or maybe recognized causes. Don’t hold your breath. Your serum level is sufficiently and dangerously low that IF insufficiency for one reason or another is a pretty good bet,.It really is serious to get this taken care of one way or another. And LOTS of studies have been done showing that using a daily b12 supllement is more than equivalent to 1-3 month interval injections. Good luck.
Jan says
AGAIN Fredd, IF I could find them. Are you in the states? I am. I cannot find methyl anything! I cannot “try” a blessed thing. I would not inject anything I did not get fr a pharmacy and have concerns where I buy any med. there were contamination issues, is what the pharmacist intimated when I asked, and he said you have to have the patent to make it. NO one can get it, none of the pharmacies. I have called everywhere.
And again, this is not personal. Please don’t make me feel attacked and or belittled. I am glad it worked for you. I have been tested for everything we need to look for and I am not an idiot, I am older than you and have been on this list for some time. Thx.
Mary says
I found Methycobalamin at my local health food store as well as at vitamin Shoppe, which has a website also.
Freddd says
Hi Jan,
Many folks order from iherb.com, they shi all over the world. Just follow their guidlines for total package shipping wioeght and value. They have The Enzymathic Therapy b12 infusion (methylb12), Ababol Dibencoplex (adb12 with boron), Solgar Metafolin and many pothers. Also a lot of other resellers. There are certain chains of stores in Europe that carry an occasional one of these.
As you know there has been a problem with a pharmacy in the USA with mold infected steroids. Contamination is a potential problem. For methylb12 injections contamination could happen. However, except for people with certain combination of hereditary and neurological problems most folks don’t need to inject b12. The current reliable brand of mb12 has been for about 10 years so far. Part of the problem of injectable mb12 is that there is nothing at all patenable about it so nobody produces it in commercial quantities. The small pharmacies that mix it to order may expose it to light and make it useless.
“you have to have the patent to make it. NO one can get it, none of the pharmacies.”
This is 100% pure unadulterated nonsense. There is no patent. There is no known restiction of any kind of which I am aware. There are a number of pharmacies in the UK that make it up for folks regularly. The problem is that they can be difficult to locate. I don’t know where you are.
Older than me? Perhaps. I’m 64. I had a 100% total crash in 1987 at age 39. I couldn’t walk 20 feet. I was totally crashed until May 21st, 2003 at 6:05 pm. Then I took a Enzymatic Therapy mb12. It was obvious my life was changed in 10 minutes. In one hour I could walk up the stairs without resting every few stairs. A lifelong depression lifted. Energy started flooding back. Burning bladder and burning tonge were better in 10 days. Burning muscles no longer burning in 10 days. Hundreds of symptoms improving, Taste and smell came back. Vision brightened. Multi sensory hallucinations went away. Daily nausa and vomitting was gone. Balance came back. Skin healed. Intestines heqaled. Almost everything healed with additional items as needed.n Since then, much debugged the whole thing. It’s a working system, for me, for many others. It’s not perfect. Right now I would say that the odds are about 50% of substantial recovery in one year to the point of beginning physical rehabilitation. My thigh muscle was down to a thumb”s thickness. It’s back now as are all the rest.. These vitamins are readily available from online retailors that ship all over the world. You don’t have to depend upon the docs that know nothing about it and appear to have no intention to learn. This site is important becasue Dr Kessler is not afraid to speak up in furthering knowledge on thos important subject. Carmen Wheatley’s new paper “The giant gorilla in the room; adenosylcobalamin ….” is available for free download. It lays out the theoretical foundation for why the active b12 is so much more effective than hydroxcbl. She hypothecizes that the hydroxcbl pathway to controlon g inflammation is a workaround starvation path and that the adenosylcobalamin is “radically” more efffective and complete at controlling inflammation. Good luck
Jan says
Ok, you get the old prize. You put that you were 54, a typo I suppose, in another post. I am 60.
In the US, I am assuming, a patent is necessary. That is what the pharmacist told me, I am not making that up, that is what I was told. I am frustrated to death, so kill me. But, I do have neurological issues with my disfunction, and have had to use injections. I do not respond to any other form. I am negative for all other issues, intrinsic, etc, and I suppose I could push for additional testing and see if after multiples I get a positive. My neurologist did say he thinkst that I have pernecious anemia this past visit. Our problem, as we ALL know, in this country are the low low levels allowed for normals in our labs, in part. And, ignorant physcians. But, how many Dr.s listen to patients? Not many. Not in my town. I live in a city with two major hospitals, one as a teaching hospital with a huge research end. Does not matter. The clinic end of that eats the patient up. You become a number not a human if you are not careful. I spent nine trips in the hospital in 2011, and only two this year. I did have certain treatments, along side B12 injections. Which helped me? The treatments were IVIG. I do not know for sure. Yes, I could not walk, had to pull myself up stairs. I was misdx with MS originally in 06, gave myself betaseron shots every other day which served to damage my heart in that it caused a myopathy, a small spot formed outside of it, on the top. That then messes with the electrical current and throws me into ventricular tach, fatal. I had to have an ICD implanted. Tried to ablate, the spot is in the wrong place, and the risk was too huge. Heart is in fabu shape otherwise. Thanks doc for the misdx and this crap. Brain tumor also. Stem, inoperable. pilocytic astrocytoma. Was told it was not a tumor but a hamartoma, akin to a freckle which is different, well guess what? it is NOT a hamartoma. And, they did a lumbar punch which could have killed me. I questioned it. MS doc said, oh, the tumor is gone…no, it was not. Brain surgeon said “It is not a tumor” Saw the 123 protein, backed off, said, “Uh, uh oh, it is a tumor” Thankfully, I did not die. So, yes, I have neuro to deal with. I have lots to deal with and cannot feel my feet. Spent two ten day visits passing only blood, one time ischemic colitis, meaning something blocked the blood supply to my colon, nine inches of it. Almost lost that part. Was really really sick. Why? NO one knows. I was 50, too young. So, yes, lots of things. I need injectibles.
Freddd says
HI Jan,
The 54 years was in reference to the number of years I have been getting wrong diagnoses and treatments. Horrendous, isn’t it. Of my parents and 2 sisters all but one of us have had botched medical care including surgery. And we are all invloved in one way or antoerh. I do group medical care software and data analysis, consulting and so forth, my father ran HMOs and consulted for the last 40 years of his working like, until a botched surgery at 80 forced his retirement. Another sister is a pediatrician, she had botched care. My other sister is a hospital adminstrator and consultant. Apparantly she knows what it takes to get good care, or maybe where.. Of course it was reconstructive surgery in Denver for ski injuries.
Subacute combined degeneration is a dymyelinating disease very similar to MS except that it is bi-lateral by definition whereas MS isn’t AND a body b12 deficiency is ruled out for MS, but that means nothoing bybecasue of the standrds used. I was falling because I couldn’t feel my feet and couldn’t tell where my leg was or it’s parts, 4 years ago now. I was 5 years into healing my body and my brain and cord were still going downhill. I was real close to a wheelchair when I found the solution. Since then I have regained control of my toes, I haven’t fallen since then and feel fine even working on the roof. I have most of my skin feeling back and some of my muscle feeling. Those are the only atrophied muscles left on my body.
I had a bit of a relapse this past summer and know the casue and have corrected it and things are immproving again. It helps a lot to be working from a verry functional pragmatically developed system. In my opinion, it is a good hundred years ahead of the formal research and the therapies thereby developed. I know of several people up out of wheelchairs in literally hours to weeks. What you are looking for is somebody who knows how to cause serious remission of Subacute Combined Degeneration and polyneuropathy.
5-star versions of AdoCbl, MeCbl with needed cofactors are likely 100-10,000 times as effective as HyCbl or Cycbl injections. There are 60 years of research based on a lab mistake that is being defended. The mistake was shown in 1959. It was basically ignored.As the active forms became avaialable since 1998 it has become opssible for these interested to try what are LITERALLY THE REAL THINGS.
The l-methylfolate, AdoCbl and MeCbl is what your body and mine and that of every animal in the world runs on. Folic acid, cyanocbl and hydoxycbl are oxidized (if iron think rusted) and more stable thereby. They are not used by any animal on the planet. And so you are convinced that the almost non working forms supplied by the medical people who haven’t exactly solved your problems so far resulting from a lab mistake in the cbl forms when the real genuine natural forms of the vitamins are avaialbe.
I spent $200,000 and 20 years chasing a diagnosis and effective treatment. It seems that there is absolutely nothing else but the real vitamins that can fix the vitamin deficincies because they literaly affect every reaction in the body. It matters not in the least that you don’t have antibodies. So what? The correlation isn’t great in any case. It doesn’t matter. The longer you go without the real vitamins in amounts needed to reverse SACD significantly, the longer it will keep getting worse and more of it unfixable. As far as I can telll iit is either better or worse, no holding in placve. That is the illusion after reaching an equilibrium and it slides out of control quickly at any slip-up. I’ve had two and so far each time is a little worse recovery.
“a patent is necessary” Only for a patentable item. Methylcobalamin is a natural vitamin and unpatentable. Metafolin, while a form of l-methylfolate, it is a stable form whereas the natural one is not stable. That is what Merck invented, a process for making a stable l-methylfolate.
When I was too disabled to work any more, my eyes wouldn’t focus much of the time, I took myself on as a client to solve the problem and gave it my full treatment. I solved the problem. Now I am not disabled, last summer I was climbing up and down 2000 feet of vertical every day and 3-5 miles typcially walking. I can stand on one foot, either foot except not with my eyes closed. You don’t have ANY probability of finding a doctor with the knowledge you need. Just ask them how much and how quickly they can put Subacute Combined Deficiency into remission, if at all. So far they are not even interested in treating it to keep it from continuing to worsen as the twiddle their thumbs or whatever.
It’s going to take an awful more lot than luck. You are going to have to trust your own judgement instead of the authority of the doctors who so far have struck out every time and likely continue. I’m serious. You are in big trouble. If I were in your position I would be ordering those essentials for overnight delivery or quickest possible. These things worsen by the day.
And remember, BRAND can be everything. The details are critical. Compliance is difficult. And no doc is going to tell ypou because they are covered as long as they apply “standards of care” even if it is “on the way to the grave” as long as they do it by the book. Also they don’t know. The average doc knows 10 drugs well is what the statistics tell us. What doc has 20,000 hours to spend to research and figure out this problem? I take approximately 100+ supplement pills per day in various timings, quantities and so forth that about 2/3 are pretty standard and just multiples. Some are purely custom to me since exact amounts are all titratge to effect.. I’ve run a 9.5 year longitudinal study of myself and unknown numbers have run similar trials and we compare info learn a lot about ranges, and difficult combinations, and some potentially dangerous side effects that a person has to be ready for. Healing is pretty rugged. Numb areas come back with intense shooting pains over and over fer each square inch of skin or so. Then it goes to intense burning pain and all sorts of pain that slowly fades to hypersensitive and then to, if lucky, something approaching normal but with no redundency. Feeling increases in from edges or out from islands of feeling. One isn’t even aware of loss until down about 70%. I would guess I have it back to about 15% in my feet. I’m pretty funtional but have very messed up feeling in my feet and hands especially. Some of the areas may be in pain the rest of your life rather than numb. I would rather walk with pain, hike, climb and do everything of a normal life with pain than to be in a wheel chair. I have no way of knowing how extensive your damage is. The man I know up out of a wheel chair doesn’t trust his balance to hiking but is no longer on disability and is back at work which is physically demanding sometimes. Results will vary as will pain. In this I suppose you could call me a consultant of last resort. I’m a systems analyst, not a doc. I am willing to offer you information. Purely my opinion you understand, from experiencese, is that you are in a hell of a spot. You won’t find a doctor with the information you need. For all sorts of reasons, partly becasue of where you live. Each country has it’s own blind spots in this. They only include some b12 symptoms on any countries official lists, ones that they find culturally important. Each country might have reasons or traditions for the things included or not included. That doesn’t help most people get treatmenrt. In industry jargon it “limits access” by denying coverage by definitions of allowed disorders. I wrote software to enforce the rules but I don’t create the rules.
You have no reason to believe me. My health was so bad I never was able to finnish college. After dropping out for health reasons for the 5th time I gave up on finishing school. I have no credentials. None the less, whatever else is wrong you have a dealy low B12 level and need to bring it up well and carefully in a way that works but also doesn’t damage you. The best available b12s that I know of are OTC and at best a few rare prescription mb12 batches have been as good.
However, there are also no docs around that will give you the same information, whether that is good or bad. I’m not selling it. The cost is the cost of the vitamins wherever and however you get them. If they are going to work to some degree you will know very fast. However, once started things work out better if continued and adapted as needed. Stop and start makes things worse. I was cheated out of so much of my life by these man made deficiency diseases. I don’t like to see that happenb to others. So you do as you please. If you want to know all details, to run in fromt of your doc or whatever, we need to exchange email. Most of the things are NOT footnoted yet and half of them may not even be possible to footnote yet. There is that one “gorilla” paper by Wheatley that is esential reading for your doc or anybody who wants to understand this, Then there are perhaps 30-40 pages of information describing things and logic and so on on derived pragmatically. This includes a decision tree that is posted here further up the page. SInce it isn’t by a doc yours isn’t likely going to want to read it. Good luck
Freddd
Fortis says
Carpal tunnel surgery or possible B12 deficiency??
Median nerve damage was just found in both arms, and the doctor brought up surgery. My arms were initially numb and tingling, but my hands HURT now, and advil isn’t helping. In the last month, I’ve mostly lost the ability to use a manual can opener, roll up my car window, turn a key in a lock, open boxes, and do any lode bearing activity involving the fingers. I just started bracing my wrists, and I’m haven’t woken up paralyzed since, but it hasn’t helped any of the things I mentioned.
Testing shows no B12 deficiency and the doctor dismissed the idea after that. He is pushing surgery now. Any suggestions?
Freddd says
Hi Fortis,
With b12 deficiency there are usually way too many symptoms over many body systems to make a doc happy. Combinations are typically used; such as the combination of neuropathy symptoms AND abnormal fatigue AND burning red tongue. Said another way, if there are epithelial lesions/inflammation AND metabolic problems AND neurological problems or blood abnormalities of several kinds . As there is a set of over 300 symptoms and signs and a person with b12 deficiency might have anywhere from 25 to 300 symptoms typically more info is needed. If you have only those and no other symtoms the probvabilty of b12 deficiencny gets more slender, however it always starts with a first problem or 5 and those are unpredictable. The real test is to try the Deadlock Quartet of adonosylb12 (very strongly anti-inflammatory), methylb12, l-methylfolate and l-carnitine fumarate odf the right brands and forms.. If you take suitable doses of the first three you will know at about a 90%+ level if they will have any significant effect within 24 hours. However, as that could be CNS based and if you have CFS/FMS type symptoms that could indicate a difficulty getting enough mecbl/adbocbl into the brain and require a 50mg single dose as a test. If there is no deficiency of any kind they won’t do a thing. So I suggest not being in a rush and get the right brands and test it at the two doses, the high one only if the first is totally ineffective. You can know with good certainty in a week. If you have anxiety as a symptom carnitine could cause an extreme neuropsyc reaction and must be microtitrated and would be unneeded in this circumstance to test the active b12s. Good luck
Freddd says
I’m very sorry to have to say that the Jarrow brand, while outstanding for 9 years has changed. We are conducitng a collection of data searching for some additional brands. Right now only the Enzymatic Therapy B12 infusion is the only 5 star mb12 and Anabol Dibencoplex, adb12 with Boron is added to the good adb12 brands. The effect of Boron is a little foggy right now but it does make a difference for many. I had a resonalbly severe Subacute combined degenration flare up with the Jarrow after 9+ good years. Others have had similar problems.
Lucy says
After taking the injections of cyano regularly for 4 months, my b12 levels went from under 200 to 1200. Do I still need to continue the injections? Does this mean I don’t have PA?
A friend mentioned that b12 levels drop significantly after a stroke. Has anyone heard or read about any information to support this?
Thanks for reading,
Lucy
Freddd says
Cyanocbl is about 1/100 to 1/10,000 as effective as the combined adb12 and mb12. No matter what your level “pernicious anemia” is never cured as that indicates you have antibodies or otherwise lack intrinsic factor and can’t absorb b12 from the diet. Cyaocbl injections are far inferior to sublingual 5 star mmb12 and adb12 as far as healing the up to several hundred symptoms you may have. Cyanocbl may affect a few of them. It is the worst possible form of treatment for any b12 deficincy that might have even a prayer of doing something. The question to ask, are ALL your symptoms noticably better or only those measured by tests? If not you might want to look for something that actually works. My average serum level is en excess of 100,000pg/ml for nweurological health in my subacute combined degeneration nervous system. That was what was need to improve the last 50 or symptoms.
robsct says
Hi Freddd, I have been injecting Cyanocbl B12 for a couple of months now and have not had the nerve healing I had hoped for and I have read here that there are more effective treatments for B12 deficiency. I have looked on iherb.com and can’t seem to see the items you recommend in your post…there are so many choices and brands. The pill form I had tried before I got at a GNC store and they didn’t work. I want to try the kind you said worked for you but I can’t find it. Can you post a link or two to the specific items I need? I’d appreciate it.
Chris Kresser says
Pernicious anemia doesn’t just go away. It’s an autoimmune condition. You will need ongoing B12 supplementation, but active forms like methylcobalamin and adenosylcobalamin are superior to the cyanocobalamin form. The Jarrow form of methylcobalamin and the Source Naturals dibencozide (adenosylcobalamin) that Fredd recommends are good choices.
Dolly says
hi.this is dolly..
since last 2 years,once in every 4 to 6 months, I suffered from light-headedness ,accompanied by dizziness and nausea.This continued for a while-around a weak,and then would subside..the doctor gave me Vertin along with some antibiotics .In july 2012,I had a the similar symptoms,but more intense, and lasted long…this time it was also accompanied by some vision problem… swaying moment,weakness and all..it took me a long time to get better.
However since that time I have never felt completely relaxed,as now and then i have a feeling of light-headedness,severe heaviness in eyes and sometimes in head , headaches- which are not very intense ,intolerance to crowded places especially malls etc., confusion.and so many more..
The doctor gave me antibiotics in intervals which made me felt better for the time being…
Finally I checked with the neurologist.He thinks it to be the Symptoms of migraine and also recommended a B-12 test..So finally today I was diagnose with the B-12 deficiency which is 171 pg/ml..He has suggested 10 injection of -UNICOBAL and also the oral cap.of the same..(I being a pure veg.no eggs too).He thinks my B-12 level triggers the Migraine…
My concern is that all these are really the symptoms of deficiency of B-12 . and nothing else!!.I am really really confused ..since last seven months not a day of my life has been normal…I feel depressed.Once a active and energetic me is becoming dull and depressed..
someone pl. suggest…
mary says
Don’t give up Jan. You deserve to live a good life. Hopefully these people are learning from you.
Jan says
Hi everyone. I have no idea how to read this site, where to start. I have been dealing with a B12 deficiency for two years. I cannot stop the shots, or space them too far apart. If I do, I drop back into the 200’s and I am sure I would go back to double numbers. It is so so so frustrating. I am someone who was dx with MS, incorrectly. Then, they decided it was CIDP, sort of like the chronic form of Guillain Barre. It got really bad, the banding of my feet, the extreme numbness, was horrible and I had to pull myself up stairs. I was in the hospital 7 times last year to receive treatments of IVIG, and while it worked, it also made me very sick. So, I am in remission, numbly. And, the shots that I gave myself to treat the MS for 4 yrs, seems t have caused my heart to develop a “spot” on it that now causes the electrical impulses to malfunction. I was going into fatal ventricular tach. I had a defibralator implanted in Feb. to save my life. I can never tell you how upset and frustrating my life has become, why in the world are our numbers so out of whack in the US? When will someone address that issue? 200 is nornal? Really? Our lab charts show normal ranges of 200-900. It is horrible. And, my neurologist is a specialist in muscle/neuropathy, as with the CIDP, but seems clueless about B12. However he told me last week he thinks that I have pernecious anemia. And no one will hear of having the Methy. B12, they all tell me that the synthetic is fine. My numbers do go up with that, so am I ok? I hate all of this, and I hate being my own Dr. I have lost all of my reflexes in my body. He thought they may have been slightly better, but he said not any better last week. The beta blocker that I now have to take to keep my heart on track is messing with me a lot as well. Cold extremities, body temp usually at 97.5, and then frying hot. No ovaries since 2003, so this is not menopause. And, lost both breasts to cancer in 2004, so no replacement therapy, natural or otherwise. Autonomics? probably.
Mary says
Jan,
My heart breaks for you. It IS terrible that our country’s medical professionals still are so clueless about this. And I am guessing our “normal” range hasn’t been changed because drug companies cannot make money off B12 deficiency. It disgusts me. I was lucky enough to have caught mine before, hopefully, any long term damage was done.
I take cyanocobalamin shots too and it helped me and made my levels rise. I think if that works for you then don’t sweat it right away. You could try the sublingual methycobalamin in addition to it. I did that for a few months and I did not notice any great difference in how i felt. I had to add B-6 to get my foot numbness/pins and needles to get better. I only take 50 mg every night at bedtime for that and it worked well.
I think the best thing we can do is be as vocal as possible both online and in person to spread awareness so that more and more people are educated and hopefully at some point someone will fund a study and prove that methyl is better than cyano and change the normal range as well.
At any rate, you are not alone and I hope things get better for you.
Jan says
Thanks Mary. The really bad part of getting sick for me has been being my own Dr. I had to fight for the core needle biopsy, it could not be cancer, cancer does not look like that, and I lost both breasts, it was really aggressive. I had to fight for everything that has been done, do my own research, and now I will have to continue to do so. No one would listen about my heart. I had to fight to get the holter monitor, they treated it like it was nothing, but when my spouse turned the monitor in at noon, they called me and me in CCU by 2, and told me not to drive. I should have died. And, I have no heart disease, just electrical issues. Same for the brain tumor. Fight fight fight. What is wrong in this world? Sometimes, I just get tired and want to stop it all.
Freddd says
Hi Jen
At the least, Enzymatic Therapy b12 infusion (1mg). Also Anabol Dibnecoplex. Put 1/4 of the mb12 under your top lip and about 1/6 of the capsule along the gum;ine along your lower lip. Let both st there for 2 hours. Also Metafolin (L-methylfolate) 800mcg. In 3 days it is highly likely that methylation will turn on starting up widespreqad healing in your body. At that point be sure th have potaqssium on hand and be prepared to t5ake 2000-3000mg of potassium daily in at least 5 doses, motstly with food and to tiyrate methylfolate to comfort of the other set of new ly intensified symtpoms. There is a post a ways up the page that distinguishes the two and has a lot of “IF” statements. Also all the usual vitamins and minerals and omega3 will either be supplemented or will run out and stop healing. SOme people need l-carnitine fumarate to really turn on healing BUT if a person has “anxiety” on a regular basis the person has to be very cautious with LCF and get specific very low titatration (100MCG) NOTmg.instructions. First there will be intesnsified neurology everything, that is normal. Then you will like feel quite sick on the third day and potassium and more metafolin woll help. Metafolin might need to go up to 15-30mg (worst form of paradoxical folate defciency folinic acid-veggie)), 6-9mg (middle severeity paradoxical folate deficiency folic acid) 2400mcg of Metafolin, normal folate utilization.
This is likely to work 100-10,000 times better than any “shots” for real b12 deficienciencoies, which you clearly have. You may start feeling the ENZY mb12 5 minutes after you put it in your mouth along your gum. I healed by the day. Good luck.
jen says
Hi, can anyone please help with some advice? i’m going round in circles after various tests all showing up different results, and i dont know whats wrong with me!! i’m still awaiting further testing for zinc, prealbumin and lactulose breath test. I’m also still waiting for coeliac diagnosis but villi atrophy wasnt bad enough so im back on gluten with another biopsy to follow. My dr doesnt seem too worried but as i feel like im about to collapse at any minute i’m starting to get worried!! I have a whole host of symptoms, and i’m underweight. (47kg 1m68cm) Here are some of my results:
wbc: 10.41 10^3/mmc, rbc: 4.06 10^6/mmc, mcv: 96 fl, mch: 33 pg,
iron: 57 mcg/dl, ferratin: 23.77 ng/ml, vitamin b12: 104 pg/ml, folates: 2.3 ng/ml,
free t3: 3.86 pg/ml, c4 complement: 0.15 g/l, c3: 0.83 g/l,
ata iga 160.7, ata igg: 3.4
endoscopy and biopsy showing ii grade duodenitis, primary lesions, gastric metaplasia, villi atrophy.
genetic test: hla-drb1*:*03,*15, hla-dqa1*:*05:01, hla-dqb1*:*02:01,*06
h2 lactose breath test: constant zero for both hydrogen and methane…..
The blood count and iron/vitb12, folates results only came back 2 days ago, my doc just said go back to the gastroenterologist…….unfortunately this will take time, do i need to be worried? should i be on b12 shots straight away??
any help would put my mind to rest, thanks!!
robsct says
My second B-12 shot after one week didn’t seem as effective. I may have given it to myself wrong, not deep enough. I don’t know. I waited 2 weeks for my third shot to see if I got noticeably weaker and I certainly did. I gave myself the third shot a few hours ago and already feel stronger and more coordinated plus I feel warmer again. I was sure to get the needle deep enough this time. I did because I felt the B-12 spreading out in my thigh muscle after the shot. I’m convinced now that my body has been starved for B-12 for a very long time.
Freddd says
Hi Robsct,
The most effective way to inject b12 is to inject methylb12 subcutaneously with a 31 gauge 5/16″ insulin syring. Any kind of injections wirth Cyanocbl or Hydroxycblo at any interval is the worsrt possibl2 way to trea b12 deficiency. At best it works on a few out of hundreds of symptoms. Adb12 and mb12 together will work on most all of the hundrees of asynptoms assuming needed cofactors. There are 4 critical factors to be sure of starting healing going a a good clip; adb12, mb12, methylfolate and l-carnitkne fumaratte. You can start feeling better and not stop. Cyanocbl and hydroxycbl make deficiency worse over time making most of the problems worse.
robsct says
This can be confusing reading all this information. It’s discouraging to read that the shots that it took me a year to badger my doctor into letting me have are the wrong kind of B-12. I started having another problem recently and I don’t know that it’s related to the shots or not. I’ve been having some episodes where when I take the Parkinson’s medication it is not effective and I actually have a strength relapse where I have to sit for a long time before I recover any strength. I thought I may have been severely dehydrated from water pills I use to get rid of fluid but I never had this problem in the past when I used them. My sister thinks I have depleted my electrolytes. I have wondered if the B-12 shots burned up something else in my body faster and that was creating another deficiency.I have been getting such poor diagnosis from my doctor I don’t know what to do. I feel I need a thorough blood screening but they didn’t even do that when I went to the emergency room.They just did a standard screening
Freddd says
What kind of parkinson’s medication?. Here is the thing. taking b12 can trigger healing whicch will cause all sorts of induced deficiencies but right up front and potentially really badly, a potassium deficiency that causes spasms and all sorts of nasty symptoms. Right behind it can induce paradoxical folate deficiency (insufficiency) and thne potentially dozens of others. Now Parkinson’s appears to be at the tail end of a long term b12 deficiency in the brain. Tests show that people with Parkinson’s have low CSF cobalamin levels and raised MMA levels. This indicates low adenosylcobalamin, the active form that makes energy and appears to control inflammation very well as well as a likely mb12 insufficiency along with an extreme l-carnitine deficincy in the limbic system of the brain which is where all those mood (anxiety, fear, panic, anger, rage)m often seen as part of Parlinson’s reside. 1mg of l-carnitine can cause 36 hours of limbic insanity if there is adenosylb12 in the brain sufficient to make use of the l-carniitine. The ATP made in the neurons of the limbic system then is somehow connected to dopamin. Benzos also cause problems for these people as benzos lower the dopamin receptors sensitivity.
So while mb12, adb12 and methylfolate titrated from very low lovels to 100mcg of a combined adocbl and mecbl absorbed and 200mcg of Metafolin, then titrate potassium to comfortable levels, ie 2000-3000mg daily in 5 doses or so. Also, Metafolin may have to be adjusted to anywere between 800mcg and 30mg depending upon a person’s specfic genetic needs for types of folates. Many people have paradoxical folate deficiency. After this intial balance is attained and reasonaby stable, other vitamins adjusted as needed, then a very low and slow titration of L-carnitine of the right variety and amount. If you prefer to think about things differently than this, that is of couurse your choice. I’m merely offering my best right up to the bleeding edge hypothesis. Good luck.
Fred
robsct says
Thanks for your responses Fred. I am not familiar with all those things and am not sure how to find out where I am with those substances in my body. My doctor is uncooperative and believes any improvement I feel from B-12 shots is in my head…the placebo affect. I’m trying to get a referral to a hematologist but that is a tricky thing too. I’d like to have a complete blood screening and see where I stand with everything.
Since my doctor diagnosed me with Parkinson’s he has had me taking Sinemet (carbidopa-Levodoa 25-250 mg tab) 4 times a day then increased to 5 times a day. I’ve been taking that since July 2011. It gives me a period of time of free movement that lasts 2 1/2 to 3 hours and, it used to be a little longer but the effect has diminished a little. The doctor says that if I didn’t have Parkinson’s the Sinemet would not work at all. But I don’t trust that he’s right about that either. If B-12 deficiency causes a Parkinson’s symptom then why wouldn’t a medication made to correct that work for B-12 deficiency too. Lately I’ve been having episodes when the SInemet doesn’t work or is delayed working with extreme weakness. My sister said she had similar problems when she was dehydrated and her electrolytes were out of balance from using water pills (as I do) and her doctor had to have her stop using water pills. So that symptom may be unrelated to B-12. It’s hard to say but I did have a recovery from this weakness after drinking Gaterade and Pedialite.But all these symptoms can be very confusing.
robsct says
Fredddd, I think I have been having the extreme potassium deficiency you talked about. I am just learning how to deal with this and without the help of the medical profession who seem to snap and snarl like a dog when you mention B12 deficiency and that they might be wrong.
Freddd says
http://www.hy-ls.org/index.php/hyls/article/download/92/74
Here is a link for the paper to down load. Note that Born is referred to only as H4B as a catalyst in the reaction, but it is absoluteky critical.
Kira says
Hi Fredd
Want to thank you again for sharing your journey and and the info you have accumulated along the way. AND! for dealing with ppl who express criticism and impatience regarding your strategy…can’t get over this weird sense of entitlement I guess;-) I hope you get back better and stronger!
Also, pls take a look at this formula by Thorne research that I found after reading your latest posts (very reputable company) called Basic Nutrients V, as I think it may serve as a basis of supplementation for many people, and they can add the extras you recommend to it:
http://www.naturalhealthyconcepts.com/mm5/merchant.mvc?Screen=PROD&Product_Code=basic-nutrients-v
Let me know what you think if you get a chance:-))
Thnx!
Freddd says
Hi Kira,
It’s good to read labels. —500mcg as Calcium Folinate is liasted on the lable. If a person has the folinic acid (vegetable source folate) this could cause paradoxival folate deficiency blocking, with the folate from veggies up to 15-30mg of Metafolin. Until a person turns on healing, and titrates potassium and Metafolin until symprtoms go down and then try this item would you know if it would let you heal. Also,you would need the Enzymatic Therapy mb12 and the Anabol Dibencoplex to get adequate amounts of methycobalamin and adenosylcobalamin. The amount in the oral formula would absorb at best abourt 10-15 mcg. A 1mg sublingual held for 45-120 minuted xcould hold 15-25% (150-250mcg absorbed). The daily sublinguals are 100-10000 times as efective as injections if cyanocbl or \hydroxycbl of any amount at any interval.
Fred says
http://www.canceraction.org.gg/system/files/ABSTRACT.pdf
Here is a taste from that paper, Adensylcobaloamin, the very large gorrila in the room.
Fred says
Hi Everybody,
I had a reasonably severe relapse of Subacute combined degeneration (like a relapse of MS, increased dymyelination) t(also many overlapping with FMS/ME) hat has put me under since some time in August. My main line mb12, Jarrow, stopped being effective on my neurology (and a lot of other peoples too). Enzymatic Therapy B12 infusion is the only remaining mb12 I know of. I am helping organize a test of a lot of brands to see if some of those have changed for the better. It’s just as possible due to natural variations or something in the b12. Boy have I learned a lot. I am on the road to recovery yet again and mostly back.
Also I have identified a 4 way deadlock in people all around the adb12, mb12, l-methylfolate and KL-carnitine fumarate (or ALCAR for some). I also received the PA society newsleter showing a study that found 1/3 of the newer cobalamoin serum level tests are msiing severe deficiencies, even more useless than thought. For neurological good health I need my serum level over 100,000pg/ml at least half the day of 5 star mb12 and a good adb12. Right now the Anabol Dibencoplex appears to be about as good as an adb12 supplement can get. It has boron which the new paper shows where that is essential in the whole thing. So, for all those asking questions about various forms of b12, there are only two real b12s, adb12 and mb12. In combination they are 100 to 10,000 tomes more effective than hycbl and cyanocbl. Instead of being effective for a few symptoms and letting hundreds continue to get worse and have worsening deficiencies as with hycbl and cycbl the active combo is essentially 100% active for all symprtoms with the needed cofactors. The main poroblem is when it turns on hard everybody goes deficient in potassium and metafolin. The balance tends to look like this.
100mcg or nore combined active b12s (adb12 and mb12)
2400mcg metafolin, without paradoxical folate deficiency
6000-8000 mcg metafolin for folic acid based [paradoxical folate deficiency
12-30mg metafolin for folinic acid(veggie folate) paradoxical folate deficiency
2000-3000mg of additional potassium
The four members of the Deadlock Quartet are adb12, mb12, methylfolate and L-carnitine. Lack of any of these can prevent healing startup. People with anxiety need to start titrating l-carnitine from the Jarrow liquid at 100mcg (1/33 of a drop) to avoid huge anxiety-fear-panic etc reactions and increase of Parkinson’s type symptoms. However, all four are required for healing startup in some people and for continued healing. Using these excellent brands of mb12/adb12 sublingually far outperforms any injections.
The Very Large Gorilla Sitting in the Room? Adenosylcobalamin is the Missing Link: its Radical and Tetrahydrobiopterin are the Principal in vivo Catalysts for Mammalian Nitric Oxide Synthases.
Carmen Wheatley
In this paper Dr Wheatly lays the ground work for adenosylcobalamin, adb12, adocbl etc being tremendously more effective at reducing inflamation and disease than hydroxycbl. The difference in effect is so huge as to largly account for the overwhelming differnce in effectiveness of tyhe active b12 protocol
Mona says
Sad to hear that you had a relapse Fred!! I hate to hear about this as I also have SCD from B12 deficiency and thankfully have not had a relapse for just over a year.
On a side note, funny you mention the newsletter from the PA society. I just got an email from them today : ) Some great info there!
I wish you continued recovery from this, take care.
shiffa says
hey im 19 year old and i just got my report it says that my b12 is 140 when the nrmal range is 176-686pmol/l,,i also have megaloblastic anemia,,my mcv is 106fl,im also underweight my bmi is 14,,i dnt have any clinical symptoms at all but i read online that macrocytosis is 4th and last stage of b12 defeciency,,should i be worried and do i require parenteral administration?
robsct says
I talked to my doctor and although he says it’s all in my head that I improved he is allowing me to get a shot a week. I think the shots are cyanocobalamin B-12, I’ll check. What’s the difference? I did improve with only one shot. My daughter suggested that the water pill I take might be flushing the B-12 out of my body faster. I didn’t know there was a patch. Can your body get too much Folic acid? Is that vitamin C? I feel like there’s a very good chance I don’t have Parkinson’s Disease at all. Thanks everyone for your time and information. I ordered that book too.
Mary says
I’m so glad you ordered the book. It will really help you.
heidi says
Cyanocobalamin is synthetic B12 that your body must convert to an active form. It is the least effective form of B12 and is the cheapest one to make. it was developed a long time ago to treat pernicious anemia and may not be very effective at treating damage to the nervous system from B12 deficiency.
Methylcobalamin is an active form of B12 and is readily availalble without a prescription in sublingual form.
Folic acid is a synthetic form of folate (vitamin B9). About half the human population lacks the genetic make up to efficiently convert folic acid to folate. Fortunately, it is possible to buy metafolin which is the active form of folate, just like you can buy methylcobalamin, the active form of B12. Chris Kresser has a great article on the difference between folic acid and folate, here on this website.
Folate and B12 work together, so if you are going to supplement with one, it’s good to take both.
Jackie says
Hi, my blood test (MGH) showed a 296pmol/L. The range that the hospital had as normal was above 133. I really felt I was low but my doctor said no. Thank you Dr. Chris for this valuable information about the ranges and how Japan is so different. My Ferritin level was low so I am now on Iron supplements.
I am now going to start on a Vit. B12 patch (Each patch contains 1000 mcg of Vitamin B-12 (methylcobalamin) and 400 mcg of Folic acid).
I am looking forward to feeling more energy and having less memory problems.
Thank you so much!!
robsct says
Today is one week since I had the first B-12 shot and had new strength return to my muscles. It feels like the B-12 shot has just been used up by my body and I need more. But the doctors say one shot a month is all I need. One size doesn’t fit all! How do they know what MY body needs? I’m going to talk to my doctor today about it all and ask him to allow me to take another shot and see if the weakness goes away again. If it does then case closed. If it doesn’t then he’s right. Why not test it? It can’t hurt me if I don’t need it.
heidi says
Why not buy a bottle of Enzymatic Therapy methyl B12 and use it sublingually? If you want to continue with shots, make sure they are hydroxyB12 or methyl B12 and not cyanocobalamin. And, you can get the shots from a pharmacy and do it yourself.
sue toce says
I have depression at times and get B-12 shot monthly. I am still tired all the time. What I did today was tell my daughter to get blood work done since she has mood swings. I also had chrons but fortunate that it is in remission. Does anyone get more than 1 B-12 shot monthly? I continue to have mood swings.
heidi says
Your body needs B12 all the time, not just once a month. There are people who inject methylcobalamin daily or twice weekly. Many other people are using sublingual methyl B12, Fred recommends Enzymatic Therapy B12 infusion. You can order it online and take it daily with better results than a monthly shot of cyanocobalamin. When B12 is used sublingually, you have to leave it in your mouth as long as posible–an hour or two, best between cheek and gum. If you are tired, you might also try dibencozide or adenosylcobalamin which helps boost energy in the cells. Buy a brand without folic acid.
robsct says
It took over a year to convince my doctor to let me have B-12 shots…he says I have Parkinson’s and has me on meds for that. He only perscribed 10 B-12 shots, one a month, which I see from reading here is not enough. I got the first shot two days ago. Within a couple hours my legs felt stronger and they had more stamina. I also feel hotter. It’s a little easier getting up from a chair or out of bed. I’m thinking I should give myself the shots once a week (or more) and if I improve then convince the doctor somehow to give me more. He says once a month is enough to correct pernicious anemia which he doesn’t think II have. My B-12 tested in the 400’s (over a year ago) which is below the 550 threshold the Europeans use. And my symptoms have gotten worse since the time of that blood test. My iron has tested low since 2001. I’ve taken iron since then in a multivitamin with some improvement but never reaching normal levels. Comments?
Holly says
I’m hoping someone might be able to help. I’m a 33 year old woman with pernicious anemia, I was diagnosed about 4 years ago and currently take cyanocobalamin injections once a month (I’m approved to take it twice a month) as well as methylcobalamin sublingual tablets. I have a 4.5 month old daughter who I am exclusively breastfeeding and I was concerned that she could be deficient because my own nerological symptoms have returned intermitently and I had been a little lax in taking the methly tablets since her birth. Her pediatrican tested her b12 level which showed up at 558 and her MMA test showed up at 220 I also requested a homocystine level which they didnt manage to do. I’m wondering if anyone knows what the normal range for infants is, the pediatrician is not concerned because she thinks that you have to be anemic to have a b12 deficiency.
Suzanne says
Hi, there. I’m afraid I can’t read through the 600+ comments right now to see if this issue has already been addressed. I’m wondering if anyone has had any experience with headaches caused by sublingual methylcobalamin supplementation (or any B12 supplementation, for that matter). Thanks!
Fortis says
No, but you can search for the word “headache” and read what the postings say about them… right?
heidi says
I have heard that if a person is deficient in both B12 and folate, a headache can result if the person takes B12 but not folate. Make sure you get folate, not folic acid.
Mike S. says
@Lorina – It is possible, according to Sally Pachalok. You should be tested to rule out B12 deficiency as a possible contributing factor. If your test comes out normal, it’s still a good idea to try B12 and see if it helps. The benefit of getting tested is that your doctor will be more supportive if the result is obviously low.
Andrea says
Just to add to the dicussion. I recently went to the doctor complaining of many neurological symtoms. She told me she thought it was depression (despite my denial), but she ordered a blood test none the less. The blood test came back as both Iron and B12 deficient. The deficiency was not severe, however within a few days of taking B12 and iron, I felt almost completely restored. What a relief. I recommend to anyone with fuzzy thinking, memory loss and other neurological systems to get tested.
Lorina K says
Can someone who has MS benefit from B-12 Injections?
Mike S. says
B12 is made by bacteria in a cow’s digestive system, and absorbed in the small intestine. (Google search “ruminant B12”) Humans have bacteria producing B12 in the large intestine, but it doesn’t seem to be absorbed there.
gary says
If its so necessary we consume other animals for b-12. Why do animals like cows not have to eat other animals to get this? Seems like there can be an underlying issue.
Jacquie says
Someone please correct me if i’m wrong…but there is a lot of b12 in soil, thus cows eat grass and pull up the grass which has soil attached. Years ago before we became such clean freaks we would get natural b12 from veg grown in the ground.
Mona says
Still I am so confused over my bloodwork for Pernicious Anemia. It creeps back into my mind after having my shot by a “fill in” GP last Friday. One doc tells me one thing, another tells me another thing!
I tested positive for the Anti-parietal cell antibody and negative for Intrinsic Factor. So is it yes or no that I have Pernicious Anemia??? Still wondering after 2 years of having that blood test done. Getting such mixed messages, no straight answers. I am thinking it should be done again (my B12 has been consistantly falling, even though I am excited my level is at 320) AND when I did have the bloodtest done it was only 6 days after having my B12 shot, where I have read it should not be done if one has had a shot within 2 weeks.
Answers or ideas anyone??? Thanks in advance!
Sam says
FREDDDD whAT do you know of Dr. Amy Yasko and methylation
Tati says
@Amy
The vitamins that are being sold over the counter or the ones that your doctor probably recommends are all artificial, plant (factory) made, full if fillers and junk, that’s why they don’t work and people keep getting sick!! . I started using Nutrilite products, they carry 100% organic vitamins(for adults and children) made with phytonutrients , all the good nutrients from plants, fruit and veggies , that we lack in our diet. Nutrilite also carries natural energy drinks (15 flavors of them) made of herb blends with 4900% vitamin B12 , 300% vitamin B6, 100% vitamin B5 and B3, no sugar, no carbs. All the energy comes from natural vitamins not sugar …no more crushing!! You can find out more at http://www.amway.com/tatibooher.
Hope this helps!
Phred says
Amy,
Tati is trying to sell you Amway products. Not to mention the ” natural energy” drinks contain caffeine. That 4900% b12 she’s boasting is cyanocobalamin. As has been said many times here that is not an effective form of cobalamin. Get your son a good methylcobalamin sublingual before he gets worse. Try 1000mcg. Enzymatic Therapy (iherb or amazon both have it) is a good start. Make sure he doesn’t swallow, chew, slurp or suck it. Have him hold it under his tongue for a least 30 minutes, up to an hour. The blood serum levels you’ve quoted are very low. Good luck. I hope your son gets well soon.
gaurav says
hi! i was suffering from vit b12 deficiency. my level was 85. i started getting injections of 500mcg on alternate day. my symptoms recovered but after taking 6 injections it came back again with weakness,low brain activity,anxiety and fear attack, and depression. is it common or should i consult another doc?
Jean says
??My daughter started losing the use of her legs approx 2 mths ago. They just kept getting weaker everyday. The tests were done for MS but the b12 deficiency was discovered. Also her Folate was to low. She has been getting b12 injections and taking b9. She can only walk very short distances at a time so, shes more or less housebound. When she tries walkins, she feels like her blood pressure drops, so she feels lightheaded and nauseaus. Is there anyway to know how long she will be this way
Amy says
I have tried to read through a lot of the comments and was wondering if anyone knowledge on B12 deficiencies in children. Last year my son received a report from his school stating that he had a remarkable decline in his vision on his left side, so I took him to the eye doctor. Of course, they tell me at 8 years old he has had a lazy eye probably for years that I have just never noticed. Vision was 20/200 and 20/30. My son tells me he remembers losing his vision. I know, sounds weird, but he says he actually remembers it. We then went to the pediatrician who then sent us to a neuro ophthalmologist who basically said the same as the optometrist. After glasses that of course did not correct the problem, he starts having these spells where he feels like he is going to fall down. He said he would just be walking or standing and feel like his legs were going to give way. I decided at this point to take him to the pediatrician who then sent me to a neurologist. The neurologist couldn’t find anything on his physical exam but did the standard neuro blood work on him anyway. His B12 at that point was 195. He said that he was the first child he had seen with a B12 deficiency, and since neurology doesn’t handle B12 deficiencies as far as the injections, he sent us back to the pediatrician. The pediatrician then tells me to give him multivitamins with 100% B12 (the ones he had been taking only had 50%). I did this, and on the followup blood test 6 months later, his B12 was then down to the 160’s. The pediatrician then tells me this still is not that low and to just keep giving him children’s multivitamins.
I just took him to a well-child appointment and discussed with another pediatrician in the group who says he probably needs injections but that their office won’t do B12 injections. So, now I am waiting on a referral to another physician. They are not sure who to send him to as he does not have anemia. His MCV is completely normal. I am starting to get really, really frustrated. I don’t really know how bad this deficiency is. He came to me a few days ago with bad leg pain. He says this happens intermittently. He is now having stomach pain which they think is constipation, not sure if this is related, and also a headache today. He just generally looks puny, pale, dark circles under his eyes. We are giving vitamins. His diet has pretty much for years consisted of a large amount of meat as he really doesn’t care for vegetables at all. If anyone has any insight at all, please help. I feel like these people think I am overreacting, and maybe I am, but I’m really afraid he’s going to have some kind of irreversible damage.
Mary says
Amy, read this book: http://www.amazon.com/Could-It-Be-B12-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1347633435&sr=8-1&keywords=could+it+be+b12+an+epidemic+of+misdiagnoses
Jacquie says
Hi my 6 year old daughter has had same symptoms as your son for past 2 to 3 years. She complains about her eyesight all the time but have had them checked and been told all is ok. For years now she wakes up in the night crying in pain from her limbs (mainly her legs) i rub them as i have b12 deff also and now what this pain feels like and what helps to ease it slightly, she complains of headahces, pins and needles and numbness, has trouble concentrating and forgets things easily, she is also very pale and dark circles under her eyes, gets colds and viral infections at the drop of a hat and also complains all the time about stomach pains. But i have asked for her to be tested but gp will not do it as say it is unheard of in children and said it is more than likely calcuim deff and to give her more milk (she hates milk but eats lots of cheese and yogurts), she is not a red meat eater so i supplement with vitamins (making sure has b12 in them). I want her tested but hitting my head against a brick wall and even to my on b12 deff i am struggling to get gp’s to understand that i need my jabs more often otherwise all my symptoms come back but again hitting head against a brick wall. GP do not understand this illness im afraid to say especially in the UK.
Margaret says
Hi y’all —
I feel a lot of empathy towards your situation with your children. My son had many similar problems — leg pain, saying he couldn’t move his legs, severe stomach pain, severe exhaustion, insomnia. He also had night terrors which were very scary. I slowly worked through many of these issues by doing the following: no more vaccines (filed vaccine exemption), started feeding probiotic foods like sauerkraut, sugar-free probiotic yogurt, etc., cod liver oil (exhaustion went away and he became strong), coral calcium w/ aloe (I swear this eliminated the night terrors). It took me years later but I finally started adding a probiotic supplement (the right bacteria produces B12 and you will notice improved sleep with enough supplement) and HCl to his diet (and mine) as well as a B complex vitamin. B12 needs HCl to be absorbed. He now sleeps much better (me too — I now have deep sound sleep with beautiful dreams). Refer to Dr. Campbell-McBride’s work (GAPS) — she uses diet and supplements to heal autistic children and she states that even children might need HCl due to all the gut damage from vaccines, antibiotics, poor quality food, etc. Good Luck!
Mary says
Margaret, what brand probiotic do you use- or do you know which bacteria it contains? I am looking for the right one.
Thanks!
Mary
Jacquie says
just to add to this i find (and this works for both myself and my little girl) if when they have the leg pain you rub firmly the muscles of the whole leg that it eases it. If your son has the same pains i do then it is quiet bad pain and even as a full grown adult i sometimes just want to cry or scream as it is soooo painful. I have all the symptoms of PA but according to my blood work do not have PA. I have recently found out i have a dermoid tumour on my ovary and had borderline cervical cancer a couple of year ago and from what i have read (and i have done a lot of reading on this b12 and someone correct me if i am wrong) but you can get a lot of cancers with b12 deff, just wish the medical establishement would realise what b12 deff is and what it can do to the human body.
Mike S. says
@Jacquie and @Amy,
You are not over-reacting. B12 deficiency is serious. On the plus side, symptoms should reverse rapidly with proper treatment.
The first thing you need to do is inform yourself about B12 deficiency. The book “Could it be B12?” is excellent. It tells you everything you need to know about symptoms and how B12 deficiency causes a wide range of health problems. But for treatment it only talks about working with your PCP to get shots. You’ve already established that your PCP doesn’t know enough to help you, so you need to decide whether you want to continue to work with your physician or strike out on your own. If you can get your PCP to read the book, he/she may be able to better serve you.
Freddd and others have posted a lot of useful information on self-treatment for B12 deficiency at phoenixrising.me . Look for “Active B12 basics” on the methylation forum. They’re pretty good at answering questions. The down side is that the info isn’t well organized. You may want to read the threads backwards (most recent first) after reading the first few posts.
If you (or your child) are already deficient (and you are… Any test result less than 500 is bad.), you can’t get enough B12 through your diet or multi-vitamins to correct the deficiency. You need either methylcobalamin shots or sub-lingual methylcobalamin. If your doctor refuses to give you shots (or won’t give you methylcobalamin), you must find sub-lingual tablets as quickly as possible. Some of the available sub-linguals are not good quality; it appears the methyl-B12 has degraded to hydroxo-B12 through excess heat or light during processing. Freddd asserts that Enzymatic Therapy brand is best, and Jarrow is a fair substitute (although you may need to take more for the same effect). I’m getting good results with Jarrow; and will switch to ET when my bottle runs out. Amazon and iHerb are good online sources, but there are lots of places you can get Jarrow and ET brand B12.
The sub-lingual tablets are cheap (less than $10 for 30), and there’s essentially no risk. B12 is less toxic than aspirin. Try not to chew or swallow. It’s best to let one dissolve under your tongue for at least an hour, but 30 minutes is OK. (Don’t follow the instructions on the ET bottle – it says to chew and swallow.) The only down side do taking B12 this way is that after you start treating yourself, your test results will return to normal and your doctor may refuse to believe you were deficient in the first place.
Tracy says
I have been Diagnosed with fibromyalgia for over 10 years. Its only since moving to Canada that any doctor looked more closely at my blood work. My B12 is currently (last blood test) 88 that AFTER taking god knows what oral B12 supplement pills and sublinguals. I was shocked. My doc said that my gut obviously is not working properly, probably because of my IBS so now I have to take shots. I have only had 2 so far and I havent really noticed anything yet but I’m hoping I dont get quite so many “senior” moments. Oh..Im 43 years old and i think its far to early for me to be acting senile.
B12 Girl says
OMG! Tracy, I bet you will feel better soon. Wow. Did you get your Vitamin D checked as well??? I would highly recommend it. I would love to hear how you progress.
I also suffer from IBS. My doc has me treating SIBO again with Xifaxin and then mega probiotics. I had Fibro symptoms for years. All gone now that I am treating my vitamin D deficiency. B12 is huge for me but D is just as important.
Tracy says
My D is ok but dips a little in the winter.All other vitimins and minerals seem to be running at normal levels and I dont have any kinds of anemia which from what I have read about seems weird. How can I be running so low on B12 without having the pernthingy anemia? strange. I will report if i have any significant changes 😀
Sophie says
Hoping someone can help! For a few years I’ve had random tingling in my feet and hands along with some numbness (also numbness of the face), muscle aches and extreme tiredness. I initially ignored the symptoms (and did so for a couple of years) until a few weeks ago when my symptoms worsened and I started to be aware of my heart beat and upon visiting the doctor they said my heart was beating very fast. Upon giving the GP my symptoms she did a complete blood count , and tests for thyroid, B12 and folate. I have now had my results everything came back ok apart from my folate and b12. My GP informs me my folate is extremely low and my doc said my B12 is slightly low at 190. I should probably add i’m a meat eater and aged 28 years. My Doctor seemed reluctant to attribute my tingling/numbness to the B12 count. I have been prescribed tablets for the folate deficiency and am about to start injections for the B12. I have a couple of questions, firstly is it not likely that my neurological symptoms will be due to the B12 deficiency as it is only ‘slightly’ low at 190? Is 190 only slightly low? I am now worried that given the reluctance of the GP to attribute my symptoms to the b12 that this could be something else and will have to go back to square one to try and find out what it is! Help would be MUCH appreciated. Many thanks
B12 Girl says
Sophie,
190 isn’t slightly low. I have neuro symptoms even at 450. Get yourself a copy of “Could it Be B12: An Epidemic Of Misdiagnosis” and read it. You’ll be shocked at how many doctors don’t understand B12.
Chris Kresser says
Yes, 190 is frank B12 deficiency. There’s nothing equivocal about that.
Sophie says
Thanks for your replies…. glad to know that all this could be sorted now with right treatment. Also recently found out Vit D was low too so hopefully correcting that will make a difference too!
SPG says
Fred,
My wife ( age 41 years) is just diagnosed with B12 deficiency, her serum B12 is 202pg/ml and Vitamin D ( 25-Hydroxy Vitamin D) level 27.5 ng/ml.
We are Asian and pure vegan, not even egg.
For the last two years, She is having constant nagging pain in back, regular muscle spasm, stiff back. Some time shot duration pains in neck, back etc. lasting 2-3 days. She is also not having sound sleep.
Her pain sensitivity is abnormally high, even small pinch will cause lot of pain, which is even non noticeable normal humans.
She was diagnosed with Vitamin D deficiency two back and since than she is taking Vitamin D supplement along with Magnesium ( Magna B6). Its has given only relief that no more locking of back.
Request you to suggest the supplement and additional test required for my wife.
Thanks in advance.
SPG
B12 Girl says
SPG – I had the same pain sensitivity. My D level was 11. I take 5000IU of Liquid Vitamin D per day. My pain is now gone. I hope your wife feels better soon.
debra says
how long does it take for these shots of acid from hell to work???? I am at the end of my rope and these torture fests just make me worse.
Rose says
Dr. Kessler
My latest blood tests for serum B12 have come back at 1476. Reference range here is 138-652 pmol/L.
RBC count is 3.8, reference range being 3.9-5.5.
MCV 102………. reference range 80-100
MCH 34…………. reference range 27-32
This would seem to me to indicate a lack of B12 but my doctor is bound to argue against that. I was on PPIs for over 8 years until 3 years ago. I’m over 60 and discovered only 3 years ago that I am gluten intolerant and have a whole bunch of food intolerances and food sensitivities. I also take betaine HCL for low stomach acid. I understand that gut bacteria can create B12 seemingly creating normal to high serum levels which seems a likely scenario in my case. I also understand that serum B12 tests don’t differentiate between active and inactive B12. I have felt fatigued and have a burning, tingling tongue.
Should I restart sublingual B12? I have found in the past that taking it reverses a low RBC count but I am not sure how much to take or for how long. i.e daily reducing to weekly or what.
I don’t really want unnecessary and/or invasive tests.
Many thanks.
Rose says
Apologies for mis-spelling of your name, Dr. Kresser!
Paula says
Chris is not a doctor (not even close), and but still . . . he should address this with you
Jack says
Hi, I just wanted to clarify something, is MMA blood test sufficient to determine if you’re absorbing B12? I’ve been struggling with undiagnosed symptoms for about 3 years now with all doctors writing it off to anxiety, which I know isn’t true. About 4 months ago I finally tested for b-12 and the level came back at 363. I started taking 1mg methyl daily and my latest test of the serum came back at over 800, along with normal MMA (dont remember exactly what it was). The only symptom that went away is fatigue, but others still remain. The biggest ones for me are feeling unsteady on my feet as well as some visual problems. It’s also strange, but about one month into starting the b-12 supplement I developed tingling/burning in my feet. So is MMA test good enough? I do have minor IBS – nothing too extreme and I feel like I can control it with good diet, but not sure if that can cause malabsorbtion. Thank you in advance.
B12 Girl says
Jack,
I don’t have answers but I just wanted to say I too suffer from IBS and I am trying to determine what role it plays in all of this. I also started having almost constant pins and needles in my feet after starting B12 shots. My anxiety went away with the B12 though. If you are taking it by mouth and your level is at 800 I am guessing you are absorbing. I was taking daily 5000 methyl sublingual and weekly then biweekly then monthly shots and my levels are still only at 500. I’ll be interested to see what the others say about this.
B12 Girl
Jack says
Thanks for your reply, B12 Girl, do you know if tingling after b12 shots/supplements is common? I thought people usually take b12 to get rid of tingling, not to get it 🙂 My neurologist said that it’s common, but I just fail to see how that makes sense.
B12 Girl says
I have heard people say that it indicates healing… my new doc told me last week to take 50mg B6 at bedtime to combat the tingling. I’ve been doing that for about 5 days now. So far, still zinging away down there.
Paul says
Well what Fred pointed out is that B12 supplementing lowers potassium levels. Low potassium causes tingling and numbness in extremities.
I’ve taken 10 or 20 pills 99mg (3% of the RDA) of potassium to bring my levels up. I also use low sodium V8 juice and bananas to combat the tingling, both high in potassium. Every time I inject B12 I get tingling and deep cramping in my feet both signs of low potassium.
BTW, if you are potassium deficient you are almost surely magnesium deficient since these electrolytes go hand in hand. Thats a little fact that I’ve never heard Fred mention.
Fred says
The problem with methylcobalaminmis that there are several different bacteria used in it’s production. Each bacterium has it’s own minor chemical variation on methylcobalamin with minor differences in some of the chemical groups. There has NEVER been any formal research into the differences between these beyond noting they exist.
I have steictly tested 10 brands of mb12 with 4 other testers, all hypersensitive, for different reasons. In addition I have trialed perhaps another 20 brands. As I inject 3x per day, and I can tell the difference between a 5 star and a zero star b12 in 4 hours, between a 1-2 star mb12 and a 5 star in 24 hours, the difference between a 3-4 star and a 5 star mb12 in 2 weeks by the consistant effects on neurology. I have done comparative trials on over 500 10ml vials of mb12 and as many as 5 different batches concurrently. I had a “standard” batch of mb12 for about 2 years against which I could test all others. There is a HUGE difference. With a 5 star mb12 the numbness of my feet starts decreasing in hours. I feel each injection and they last about 8 – 12 hours before starting to wear off. A 3 star mb12 makes no such difference and body symptoms don’t return but body and CNS neurological symptoms start returning in a week. With a zero star mb12 body symptoms start returning in 3 days and CNS symptoms in 24 hours. This is the same as with cyanocbl, hydroxycbl and no b12 at all. The differences noted hold up across virtually everybody I have corresponded with for the past 9 years who have done comparisons. I have set up multiple trials of various kinds woth thousands of people. The decline of Jarrow mb12 was relatively recent. I take it to IMPROVE the performance of my 3 star injectable, the best I can find currently. It stopped improving on the injections and allowed a slow decline of CNS and peripheral nervous system in myself and a number of others that mentioned it. My assumption is that they bought a new kilo of mb12 crystal and their supplier sent them crystal from a different bacterium or production method or post production processing. It is likely nothing Jarrow has done except buy an mb12 crystal that isn’t as superior as the one they have used for the last 9 years.
Folic acid and/or folinic acid in those who can’t convert them adequately to methylfolate competes with and effectively blocks abput 10+ times as much methylfolate. A person who has no such problem appears to top out on all methylfolate needs by 2400mcg, with folic acid provlems, 6000-8000mcg and those with folinic acid-veggie food source folate problems appear to need about 15mg +-seveal mg, such as the dose found most effective with Deplin (a prescription dose of Metafolin).
B12 Girl says
Fred,
How can one get injectable methylcobalamin? Do you need a compounding pharmacy?
Thanks,
B12 Girl
Darrin says
So I’m a very recent vegan convert and the claim that B12 can only be found in animals is false. There are many supplements out there that obtain B12 through bacteria rather than “the gut of animals.” Dont take my word for it google vegan B12 and see what I’m talking about. The stuff that I use is the “up & up” brand from target but Im sure there are far more brands out there. These supplements are not from spirulina or nutritional yeast and I suggest that if you are using these as a source of B12 that you stop. Nutritional yeast is good for other supplements and spirulina (in larger quantities) is a protein powerhouse. Not good for B12 though. If you are vegan and feeling lethargic and try this out you’ll see what I’m talking about. It may also be a good idea to get your blood levels checked regularly.
Bill says
HI B12 Girl,
Fred did not say that the Jarrow brand was useless.
He stated that he used to give it a 5 star rating and he now gives it a 3 star rating.
In Fred language that means that it’s 40% less effective than it was before but it is still effective.
Have you tried raising your folate levels by taking Metafolin?
this brand http://www.amazon.com/gp/product/B001LR2RVQ/ref=oh_details_o03_s01_i00
I have began feeling better little by little by following some of Fred’s advice plus I have been eating paleo like Chris recommends for about the past 5 months. Paleo eating helped a lot and then I saw another improvement following Fred’s advice.
According to Fred and many other people if you take folic acid or folinic acid it strips your body of b12 so Metafolin is what is suggested help keep your methylation cycle working better.
I know it’s a little hard to follow Fred’s post sometimes but I personally think that it is worth the effort to try and understand what he is writing. As he stated he doesn’t have credentials but he sure has put a lot of time in trying to write to help people. Everybody should take some time to think about what anybody writes whether they have credentials or not, we all know there is a lot of bad information out there.
I understand that some people may not agree with what Fred writes but I really don’t understand why so many people want to bash him here. I’m sure your like me and are just looking for some help for your medical problems. Everybody is making comments on here some you agree with some you don’t. I think it best to take from the comments what you can and if you don’t agree leave them alone and don’t bash the guy, it looks to me like at least he is taking the time to try and help people.
B12 Girl says
Hi Bill,
You’re right, Fredd didn’t say the Jarrow was useless. I think I was feeling it was useless myself and that just slipped out there. I stand corrected. Although one would think if it WAS being absorbed, I wouldn’t still be at 500 so it may indeed be useless. That being said, I have really tried to understand Fred’s comments and went to his other site and read up on it and I came to the conclusion that I may not have the same issues as Fred. I don’t have a low folate, or at least I don’t think it is low- it is 15, is that low? My B12 was “normal” at 320 and then again at 229 even though I was symptomatic the entire time, and still am at 500, though mostly it is just the neurological stuff and not as much the fatigue, anxiety, depression, inability to think etc.
I personally think Fred is brilliant, and that he has done a huge amount of testing that is very useful to many people. I wasn’t bashing him. I am thrilled that he is here to help those he can but I also think not all of us have the same exact issues. It would be great if we had a forum. I belong to forums for other issues I have (IBS, leaky gut etc) but have yet to find a forum for B12 issues. If anyone knows of one, please let me know.
Kym says
I have to say that since Fredd started posting I have largely stopped reading this blog, pretty much everything he writes, I don’t understand, it is all in medical language and unfamiliar to me and that is without all the constant typo’s. Chris managed to explain it in a way that the layman can understand and I felt much more connected to the discussion before. Maybe it is just me, maybe I am just not clever enough to understand his posts, either way, the information is largely useless to me.
On another note, I was wondering, my b12 levels have now gone up to 1000 after receiving monthly injections, yet I still have many of the same symptoms and they have put me on three monthly injections now. No one is taking charge or even asking me about my symptoms or looking at ways to reverse them, I feel totally left out in the cold and feel as if neither my consultant or my GP have a clue how to tackle this deficiency
B12 Girl says
Kym
What symptoms are you still experiencing? I have had about 10 shots now, plus the Jarrow Methylcobalamin that Fred said is now useless, and my levels have only gone up to 500 from 200. I still have neurological symptoms in my feet. My doc told me to start taking 50mg of B6 every day to take care of that. I started that 2 days ago. I have no idea why I should be any more likely to be able to absorb B6 orally than B12 or D but I am trying it until I can get answers. After two days I still have symptoms but I am sure it isn’t long enough to tell yet, IF i am even absorbing it.
Kym says
Well, mostly it is my feet, I don’t have numbness really but they burn and sometimes get so hot that a cold wet flannel is almost dry within 2 minutes of putting it on my feet. I have mentioned it to my doctor and my consultant and my consultant says it is not connected and my doctor says it sounds neurological but has done nothing to investigate it. I went to a physio a year or so ago for a whiplash injury and she questioned if I had been tested for MS as she said, the way my legs move etc appear to be due to a neurological problem.
Just some brief history … I lost the ability to walk unaided 15 years ago and have been on crutches ever since. They put it down to fibromyalgia and sent me on my way to get on with it. I have real difficulty in manoeuvring around objects and can’t like … step over something, it is like I have to think really hard to make my legs do what I want them to do, that is the only way I can describe it. I often get the ‘shakes’ and a tremor in my legs when trying do do something like .. step down a kerb.
Anyway, none of that has changed since on my insistence they checked my b12 levels and they said I needed b12 injections after I first read this blog and that was about a year ago.
B12 Girl says
Kym,
I understand your frustration. I had my levels checked and they were low enough to be symptomatic but not low enough for an untrained doc to know that. I would read the book and then perhaps pass it along to your practitioner and see what happens. I would also insist on getting other levels checked. I have heard people reverse their neurological problems with proper treatment. I have had foot problems for 10 years but no one ever one time asked me about B12 or B6. And now I just read B5 can do it too.
Do your hands ever bother? Mine have a vague tingling sometimes.
Kym says
Thanks for the advice, I will definitely have a chat to my doc when I get back from holiday (I leave for the Rockies tomorrow). My hands are not great, not tingling very often, although sometimes the very tips of my fingers tingle and my wrists sometimes feel numb my hands are very clumsy and fine motor movements are often a problem
B12 Girl says
Kym,
My symptoms are not as strong as yours in that I can walk no problem, but my feet also get very hot and I often use an ice pack on my feet just to be able to go to sleep. The night before last, my heel turned beet red and looked really puffy. I took a picture of it on my phone to show my doc next week. Mine is like sharp pains/burning with like a squirmy feeling in my soles of my feet. Sometimes it goes up my ankles too.
Have you read “Could It Be B12?” Here is a link to it: http://www.amazon.com/Could-It-Be-B12-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1345907084&sr=8-1&keywords=could+it+be+b12+an+epidemic+of+misdiagnoses
Kym says
Yeah when my feet get hot like that they go bright red and puffy also but all over, not just my heels. I should probably take a picture next time it happens too so that I can show my doc. I haven’t read that book, but I am convinced that my problems over all these years has been caused by low b12, perhaps the damage is just too far gone to be reversed. If my feet are left dangling I immediately get pins and needles but like you said .. sharp pins and needles, not the type you get when you have been led on a limb and it goes to sleep.
What infuriates me is that I have had another auto immune disease since I was 14 and have regular blood tests, no one ever checked my b12 though and when they finally looked a little closer they said my iron levels had been low forever … which no one ever mentioned. The doc said that often they just put down low levels to times of the month etc …. but you would have thought someone could have made a connection without me self diagnosing 😮
Paula says
Wasn’t attempting to be anything but inquisitive of the person offering lots of advice on someone else’s blog/post. Maybe Chris needs to revisit this issue and do a part II. I don’t care if he’s busy or not.
I should add, it’s unconscionable doctors can’t get off their lazy asses and think outside the box they were fed, on SO MANY issues. I am no stranger to investigating my own health concerns, with NO HELP from doctors (nor anyone else). Recently had a huge workup from a few (M.D.) practitioners; none checked B12. It’s not on the radar as vitamin D deficiency is; they seem to know about that one.
Good luck everyone — sorry so many people are suffering from something so freakin’ easy to test for and remedy, really. Breaks my heart.
P
Julee Ellison says
I hear what you’re saying! And the thing that makes me batty about this ‘thread’ is that for the most part people don’t respond. I have asked several questions to Fred, or Fredd, and never hear back. For example, earlier I asked “Is this the one you are referring to Fred? It’s a chewable, but you say leave under the tongue?
http://www.amazon.com/B12-Infusion-30-Chewable-Tablets/dp/B0012HCCNS” as with many other questions (in direct response to a post) .. but never hear back. 🙁
Bill says
HI Julee,
I’m not Fred but I have read about Fred’s b12 protocol elsewhere after finding his information here.
The Enzymatic Therapy B-12 Infusion, 30 Chewable Tablets that you asked about are the correct ones that Fred recommends to put under your tongue or between your cheek and gum. It is a small tablet that easily fits under your tongue.
Julee Ellison says
Thank you Bill!!! I appreciate the follow up!!! =)
Paula says
It’s too bad this isn’t a forum — in reality, it’s a mere blog post with a comments section that, if I saw correctly, has over 600 comments!? Obviously, Chris’s site/blog on this subject is right up there in the search results, generating a lot of traffic and . . . comments.
And some pet peeve of mine is the image of very old woman’s face at the top of the blog post — seems to me we have a MUCH younger generation here, suffering and seeking help. I hate that photo. Perhaps part II will have a real-to-life infograph of something or other. Most people in nursing homes (the pic’s generation) get B12 injections. or at least they used to.
Julee Ellison says
Paula, I am sure when Chris originally posted this, he had no idea there would be 600+ comments … and possibly didn’t know that there are so many of us younger folks that have been affected! It really would be nice if this were in a forum … that is for sure!!!!
Paula says
Fred or Freddd?
With all due respect, do you have a spell check or editor of any sort? — it would help readability of your vast and wordy comments. Further, you seem to have become the de facto owner of this subject/blog (Chris may want to close comments if he’s abandoned the desperate people who come here, maybe?). With respect to this, in your own words here, can you please share your personal biography and credentials?
Also, what EXACTLY are you referring to Jarrow B12 in your LAST comment? You went crazy recommending this product and ONLY now you mention it’s no longer the 5 star you promoted? Please explain yourself to the people who are desperate for help and following your every word. Thank you
Mona says
With all due respect to those you mentioned, thank you for this Paula, my thoughts exactly!!
Bill says
Hi Paula,
Fred has done nothing but offer up some good information and help here.
I don’t quite understand your comment, I have been waiting for Fred to comeback for more information and now you are being rude trying to chase him off.
I don’t see you offering up quality information, have you ever heard if you don’t have anything good to say…..
Plus I’m sure Chris has a lot of things on his plate and that he didn’t abandon anybody. I didn’t see anywhere where he stated that he would answer all of the comments. He puts up great free information that I am very much appreciate.
As far as the Jarrow b12 Fred clearly stated that for some reason it isn’t working as well as it used to and that he would look into it when he gets back home, that seems pretty clear. What more explanation does he need to give?
I don’t mean to come across rude but there are people on here that are looking for help and whether you agree with the comments or not that doesn’t mean you should be rude and chase off Fred or state that Chris should shut down the comment section.
Mona says
Hi Bill,
My thoughts, I don’t think Paula is trying to be rude. I myself am one that looks for any and all information regarding my issues with B12 deficiency which have now resulted in Subacute Combined Degeneration of the Spinal Cord. Some of us do take people on their every word especially when we have been dealing with a health issue for a very long period of time and we crave answers. Asking for Freds credentials/biography is not a bad thing?? (Thanks for sharing about yourself below Fred!)
I know that Chris is extremely busy and while I do appreciate Freds vast knowledge, I felt that his comments were maybe “overtaking” Chris’ forum as there were not many responses from Chris?? I in no way wish for Chris to close the comment section!!! His having this forum is why I came here in the first place. I think we are all entitled to our opinions good/bad or blunt, be it Fred with his help or Paula her comments. Fred has been through alot and has taken charge of his health and has a wealth of information WOW! I look forward to moving forward and continuing to read and listen to everyone here.
Mona says
Sorry Julee …… I replied under the wrong comment!!
Fred says
I reply directly into these boxes. Because of decades of progressing Subacute combined degeneration becaUSe of years of b12 deficienciey becasue of the ignorance that prolmugates the statements about b12 that are typically seen I have lost about 90% of my fine motor coordination in my fingers,
Products change beyond my control.. What was great for 9 hyears and one of the best has becpome very mediocre. I don’t go crazyin any direction, I report it the way I see it from my experience and that of others. I have a drivers license nd a high school diploma. I have no credentials of any kind that matter to anybody. You you will have to trust your own judgment. Has anybody certified that you do critical thining?
I have worked as a systems analyst, software designer and vendor and group health paln consultant for 30 years, cured myself from decades of CFS, ME, FMS and loads of other thionghs. t one point i was days away from a wheel chair. I solved my problem that over 100 docs has absolutely zero clue. It’s demonstrably fits the pattern of millions of others of chronically ill in the USA. Thjere are lots of desparate people here. If you are a betting man then then I would be willing to bet that 90% of the desperate (as I used to be) people here could be “normal’ in a year if they were to stop believing\ the nonsense. I answer only becaus I am empathic with all the des[paragte people who’s lives are being destroyed by these pseudo vitamins and man made deficiency diseases.
Only NOW do I mention the Jarrow problem. I don’t norice you mentioning it sooner. What are you trying to infer? About a month ago somebody mentioned it to me. I checked it out and performed A tral and sure enough, it is now an inferior brand. You right here are the fi\rst to hear it. I don’t have any authority TO TELL YOU WHAT TO DO, i’M NO HELP AT ALL. any true beliefs in this. I jiust report the facts as I see and understand them and have helped thousands. You may choose to consider what I say or not. If you are looking for some authority to tell you what to do, I’m not that person. If you have self responsibity and can do critical thinking then maybe you can benefit. I deal in pragmatic results. You can argue about authority all you want so include me out. Since authority has avsolutely nothing to do with correctness or effectiveness what “authorithy” has to say about b12 and folate is so totally wrong it will kill thousands and make millions ill completely because what the authorioty has to say is terribly wrong. Follwoin g authority 9 years ago I was dying. I took my cyancobalamin and folic acid like a good little dying idiot. I weighed nearly 300 pounds, dying of congestive heart faiure, vomiting daily with loss of 80% of muscle mass. Now I am 200 pounds, having taken off 95 pounds of water, 50 pounds of fat and put on 50 pounds of muscle. Instead of being in a wheelchair, I can climb mountains, hike 2000 feet of vertical up and down every day and am heaklthiest ever in my life. At 64 I would be pleased to challange you to a 10k road race, 9 years ago I couldn’t have walked 500 yards. Good luck.
Fred says
Hi Shadedwillow
Periodic injections of cyanocbl or hydroxcbl are the worst possible b12 thereapy that occasionaly works a little. Random brands fromn the viotamin store are no better. Right now I am willing tn identfy one brand, Enzymatic therapy Infusion. When held under the lip for 45[-180 minutes it will be more effective than ANY injection from ANYBODY. It is pretty clear that while initial injections of cyanocbl or hydroxcbl may work a little once or twice, the bodies abilty to methylate the inactive coblamines into active b12s becomes rapoidly exhausted and then a person may develop 300-400 b12 deficiencies while the pseudo-b12, cyanocbl, may work on 1 or 2 symptoms.
As the type of b12 injected into the muscle, is almost totally the worthless inactive form of cobalamin injected into the muscle, it is shear unadulterated nonsense that injecting the wortheless cobalamin is any use at all becasue it is going onto the muscle. it is absorbed from the muscle in 30 minutes and 50% excreted by kidneys in the first 30 minutes and an addtional 50% of remaining each 30 minutes for the next 4 hours reducing the retained inactive cyanocbl to about 10mcg AFTER 24 HOURS.
Just take the ENZYMATIC THERAPY b12 INFUSION, 1-10 PER DAY, 45-200 minutes each.The OTHER kind of essential active b12 is adenosylcobalamin for the mitochoindria and muscles. The Soiurce Naturals or Dibol Dibencozide (different name same stuff are both effective used under lip for 45-120 mioutes in which 15-33% is absiorbewd as opposed to 1% if chewed and swallowed. In otherwords a long slow under the lip method can deliver 33 times as miuc h actiove vitamin to your bodsy and that makes a difference. In approximcately 20%+ of people Metafolin lack is preventing them being able to utiolize or retaIN ACTIVE B 12S.
Bill says
Hi Fred,
Did something happen with the Jarrow methyl b12 that caused you not to recommend it?
Fred says
Hi Bill,
Something has changed with the Jarrow mb12. I don’ty know what or when. It was mentioned to me two months ago anb otu the time I was noticing the possibility too and I performed some tests that I could and it is now at best 3 star. After I get back home after laborday I will investigate the problem.
Fred says
It stopped working well for quite a few people starting several months ago, me included. What hjappened is not yewt clear, butr something did. I have removed it in my program and am improving again. So JARROW IS NOW 3 STARS OR LESS AND not recommended. i WILL CONTINUE INVESTIGATING
Julee Ellison says
Is this the one you are referring to Fred? It’s a chewable, but you say leave under the tongue?
http://www.amazon.com/B12-Infusion-30-Chewable-Tablets/dp/B0012HCCNS
Shadedwillow says
I have been taking B12 Injections for 2 yrs. First it started weekly, bi-weekly and then monthly. I am still doing monthly injections. My levels have been slow to rise and have recently plummeted back down from 520 to the 386 within a 6 month period. The number itself is not what concerns me, but the sudden drop. I am being told to take an additional supplement under my tongue. I do not know what the underlying issue may be, nor does my physician give me any underlying conditions. I’m trying not to throw my physician under the bus since she is treating the issue…I would just like to know what the issue may be.
Any suggestions for a sudden drop of B12 like that with monthly shots?
B12 Girl says
Linda,
Is your doc willing to treat you?
Linda Krinbill says
Im 65 yrs old and never had my b12 checked. I have suffered for years from almost all the symtoms but just thought they were something else. I do have problems in my back that I know of because of a cat scan I had 3 yrs ago. The past couple of years, I have had a lower back pain and am finding it sometimes very painful to walk. My legs are very weak and the tingle and hurt even the tops of my feet and all the way up the leg. My memory is getting very bad, like how to spell a word or what I got up to do etc. If it hadnt been for a recent health crisis in my daughter, I would have just thought old age! She was losing all strength in her legs and had tests for M.S. She is now in a wheelchair until the damage is repaired from b12 defiency!!! I had my test done and my level is 86!!! This is in Canada.. This is a very serious level, isnt it? Any suggestions or advice??
Sarah says
Hi all, Im new to the discussion board.
Im 22 year old and I was diagnosed with Vitamin b12 deficiency November last year. my b12 count was 81 and folic acid 2.2. (I was told normal b12 level should be between 500 – 1000 and folic acid 15-20) I was feeling constantly tired and completely out of energy, and was getting pains in my legs also that felt similar to growing pains i got as a child!). Ive been reading through most of the other comments made by others and there symptoms seem much more severe compared to mine. Anyhow the doctor explained that my body wasn’t absorbing the vitamin b12 from the food i was eating. i began receiving the injections, i had 6 injections within the space of 2 weeks and then 1 every month. They did begin to work and i started to feel as though i was gaining a little more energy, I could concentrate more when i was at work etc. but then after having b12 injections it took me ages to switch off on a night and actually go to sleep sometimes i would be up til 2/3am and have to be up for work at 7….so id get up for work feeling exhausted and tired and back to square one. I work with children in a nursery so need all the energy i can get!.
i decided against getting the injections, they were just not working out for me, eating a healthy balanced diet and getting a good night sleep seems to be working out just fine for me at the moment. When i told my doctor I did not want to receive the injections anymore he did not seem very happy with me, he was quite insistent that i take the shots and said it would effect me in the long run and made me feel if i didn’t have one then i would become ill.
I do have a question..
Does B12 help your immune system and to help fight against infections?? or is it simply just to help b12 get into your body to gain energy. My doctor is very pressuring every time i have went with a problem, he always says the cause of me keep getting virus’s and infections is due to me not getting my b12 injections and i feel pressurised t get the injections. Im only 22 and don’t like the thought of getting injections for the rest of my life it just doesn’t feel natural.
within the past 2 month i have suffered with a kidney infection, ear infection, and a throat infection..all needing antibiotics to treat them. is it true that this could be caused by not getting my b12 injections?
and do you have any suggestions as to what could be making me more prone to catching bugs and infections? I’m beging to think there may be something up with my immune system and thats its more than just the b12 that my doctor keeps ranting on about..
(I take a small packed lunch to work with me and My mum prepares lovely meals for me for when i return home from work. Ive recently bought some b12 vitamin tablets (my doctor is insistant that they will not work) and starting next week im going to start eating more healthier to try to include all the vitamins i need to help keep me healthy and drink plenty of water) – Hoping to see a change in myself. Thanks for listening
Would be gratefull for any advice and help x
B12 Girl says
Yes. It does. If you don’t treat your B12 deficiency your nerves will deteriorate and you will lose feeling in your feet and hands and who knows what else. You need to read up on it. Try treating your sleeplessness with Melatonin. If you cannot get Vitamin B12 from your food, you can’t get it from a pill either and they don’t call it pernicious anemia for nothing. It means DEADLY anemia. The reason the pills and food won’t work for you is your stomach isn’t producing intrinsic factor and without that you cannot process B12 orally. Get the shots!!! Don’t end up like me with numb feet. Dear god, do you know how many of us wish we had a doc that would take our B12 seriously? Be thankful!
Paul says
Since we are all so reliant on these blood tests to not only try to determine what is wrong with us but also to check our status on a regular basis I think it is worth mentioning a common mistake blood drawers make.
A tourniquet should be placed on your arm for about a minute and a venipuncture should begin. As soon as a tube is placed and blood begins to flow the tourniquet should be REMOVED. To leave the tourniquet in place during a blood draw can cause what is called hemoconcentration and it alters blood chemistry. Potassium results can be totally skewed just by waiting to remove the tourniquet for instance…. making the results worthless.
I don’t know about you but very often when I’ve gotten blood work the tourniquet is left on until the last tube or left on for several minutes. Now instead of taking time to argue I reach up and pull the tourniquet off when the blood begins to flow while the nurses hands are occupied. I get objection half the time as if I’ve done something wrong but I’m sure they’d argue. An argument they’d lose. I’ve already tried to tell them and they are convinced I don’t know what I’m talking about and this includes doctors!
REMOVE THE STRAP if you want accurate blood work!!
Catherine Wall, RD says
Sooo very glad to read your comments on the ridiculous range that is considered ‘normal’ for serum B12 levels. I’m an RD and developed pernicious anemia about 12 years ago. My B12 was 152; so the MD didn’t even consider B12 deficiency as the reason for my excruciating lower leg/foot pain, my shortness of breath, my extreme malaise, depression, visual hallucinations, etc, etc…every B12 deficiency symptom-I had it. Anyway, I finally requested my own chart (was working in a hospital/clinic at the time) to see if I could figure out my own problem. When I saw the low-“normal” B12 level, I requested that it be re-checked and, just 5 weeks after that first level was done, my B12 was 120. Then I had quite a challenge getting someone to take it seriously and treat it. In the end, I had to use expletives to get an MD’s attention….really! When I phoned a clinic MD and he asked what he could do for me, I said, “I’d like some f—-king B12 and I’d like it today, please.” This got his attention and I was seen and given an injection that day….finally. Since then, I’ve had a thing about education lay and professional people about B12 deficiency and about ferreting it out in general. I always check the MCV in every patient I see. If there’s not a recent one, I ask for one. If possible, I get a B12 level on anyone with deficiency symptoms. Sometimes, they are too confused to even recite their symptoms due to the effects of deficiency. Anyway…thanks for the mention.
Moongirl says
Kudos to you Catherine! I know I was confused and my level was 233. My malaise, depression, anxiety- all gone now that I am on shots. I wish I could say the same about my foot neuropathy. It’s so important to educate as many people as we can about this nightmare. I buy copies of “Could it Be B12” and give them away with the request that after the person reads the book, they hold onto it until they hear of someone who has symptoms and they give it to that person for free, with the same request made of them.
Adam Levine says
hi one and all, I’m very new to this. My B12 level was read at 185 3 months ago, and my doctor ignored it. I then had a change in doctor, she noticed the level, retook the blood test, and the level had already sunk to 135. she has administered me a supplement, which is be taken for 3 further months, at which point I will be tested again. should i rather just ask her to administer shots?
Karl says
I am new to this discussion board, but thank you to everybody for your posts/stories. I will admit that I haven’t read everybody’s post, but plan to.
I am nearly 49 years old and have known that I am Vit B12 deficient since at least 1987. I have always been easily fatigued and unable to play sports, etc. When a smart doc checked my level it was nearly undetectable that year. After several repeats – still barely nothing. I started IM replacement (after a big medical work up) – but was not good with follow up (honestly). One thing after another – not taking care of myself – I was diagnosed with Grave’s Disease in 2000 and underwent radioactive ablation for that. Over the course of many years, I developed muscle fasciculations, wasting, SEVERE EMG changes and psychological issues – depression, anxiety, etc. Two and a half years ago I slipped two discs in my neck (while rolling over in bed!) that look on MRI like I was in a severe auto accident. I had emergent surgery to remove the pressure off of my spinal cord. I believe that it’s because of my neuromuscular disease from B12 deficiency that my spinal muscles were so weak that it caused the slip.
Fast forward to today- I found Nutrition, Chris Kresser and the Paleo Diet. I have started the B12 protocol for a severely altered Metametrix Organic acid profile. My energy production markers were abnormal (high/very high), my B complex markers the same, and my MMA was high as well. My Neurotransmitter metabolism markers were high as well as my detox indicators (very high). My Orotate and alpha hydroxybutyrate were nearly off the charts, the latter suggesting Glutathione deficiency.
Since starting the B12 protocol, I have developed HORRIFIC cramping in my muscles – legs and back mostly. It feels as though I’ve been running a marathon (not that I’d ever know what that feels like). Do any of you have suggestions regarding this? I am on K gluconate (200 mg/day), SAME-e 200mg/day (Jarrow), Methyl Guard -one twice a day (Thorne) and Dibencozide once a day (Source Naturals); I am to start the Methyl B12 tomorrow as per the protocol.
I should also tell you that I have had a cardiac arrythmia (tachycardia all of my life) for which I am on a Beta blocker as well as Klonopin 1.0 mg (for myoclonic jerks while trying to fall asleep) since 1985. I know that both of these medications can deplete CoQ10 so no surprise with my Organic acid profile.
Sorry to ramble – I just can’t believe that I’ve let myself get to this point. I have known for YEARS about the B12, would inject it – go off of it, like I said, and then start it back up (Not to say that cyanocobalamin would have been the right thing to take anyhow); I can’t believe the damage that this has caused. I need to know that there is light at the end of this very dark tunnel…..
I must also tell you that I’m a physician (a Pediatrician) who struggles to go into work every day. I am only working about 60% over the past year due to neuropathic pain from my neck injury. Please tell me that it’s going to get better…………thanks for taking the time to read this and thanks in advance for any advice that you can give me. I understand that we all have unique experiences that make our “stories” our own and that nobody necessarily will respond to a specific generlized protocol. We all have to find out what’s best for us. Thanks to Chris Kresser for discovering the severity of this and for getting me on the track to recovery (I hope!!!). Again, I appreciate anything that any of you can offer me.
Mike S. says
Karl, You’re not taking enough potassium. I’ve had intermittent leg cramps for more than two years, and they became more frequent/severe on the B12 protocol until I raised my K intake. You should aim for 2000 mg/day as a start, and adjust from there. Buy K-gluconate by the pound and mix it 1/2 tsp per cup of water. You can also use potassium chloride (Morton Salt Substitute), but it’s very unpleasant.
Here are some other things I’ve found helpful for cramps:
… magnesium – 400 mg/day or more – Magnesium is essential to recovering from a potassium deficiency. I prefer Mg glycinate. You may have good luck with another chelator, but this one works best for me. Avoid NOW Mg-K-aspartate. That’s the only one that made my symptoms worse.
… calcium – Some people report fewer cramps when taking calcium. It always makes my symptoms worse, so I don’t take any.
… sodium – If your sodium level gets too low, your kidneys will dump potassium to keep electrolytes in balance. Don’t skimp on salt.
… carbs – If you’re on a super-low-carb diet, try raising your carb intake to 50g/day. I found that 35g is too low, but 50g or more reduced the frequency of cramps. (Since I eliminated caffeinated coffee, I was able to lower my carb intake to ~5g/day with minimal cramps. I still have to watch my K intake.)
… no caffeine – Once you’re cramp-free, you can experiment to find your tolerance for coffee. I can only have about 2 oz per day of high-test. Decaf coffee is OK for me.
… vitamin E – I’ve seen reports that 1200 IU/day helps with cramps. It didn’t help me.
… naproxen – I don’t like taking it because of the potential kidney damage, but one at bedtime knocks out the cramps for a whole night. Consider this a last resort.
(Both vitamin E and naproxen act as COX inhibitors. It may be that other anti-inflammatory supplements may help on the same pathway. I plan to try curcumin next.)
Karl says
Thanks Mike. I’m doing significantly better today. I’ve never felt this good since ——-I can remember. It’s just so hard to believe that I’ve gone this long and hadn’t addressed it to the fullest degree. I want to shout out to every person that I know to make sure that they take their own health into their own hands and not to accept life “as is”. Since adding the K gluconate my BP has even normalized and I’m off of BP Rx. It’s amazing what the human body can do when given the right fuel. I am so blessed that there are practitioners such as Chris Kresser out there that are willing to spread the news and offer hope. I’m in the midst of my Master’s in Clinical Nutrition right now. Can’t wait to be able to give back…………By the way – I am nervous about going higher on my K dosing. (It’s the physician in me- call me a sissy but I know the potential hazards). I realize that my metabolism is altered and I’ve read all the postings why I need more -it still scares the crap out of me!
Tony says
Ok, so the symtoms are identified: inability to absorb B12, pernicious anemia, etc. But what is causing this? We know it stems from an inability to absorb b12 in the gut, but what causes that? Is it genetic? is it vaccines? is it GMO foods? is it stress? is it ??? What is causing all this b12 deficiency?
thanks,
Tony
Lucy says
Thank you for the information. Turned out that my MMA was normal! I am already feeling better after taking the shots each night for a week. I wonder if my doc specifically ordered the cyano or if I could get the better brand that you indicated. Thanks again for all your help through these posts.
Lucy says
My doc ordered an MMA blood test. My B12 levels already showed that they were low (190, I think) and my homocysteine levels were elevated (17, I think). Why would an MMA test need to be done? Would it show anything other than what I already know– that I am B12 deficient and need to take injections (which I am already doing).
Fred says
Hi Lucy,
as the injections are usually inactive hydroxycbl or cyanocbl, they may not work well, quickly or at all. The MMA shows when the mitochondria are in failure mode needing adenosylb12
(dibencozide) and/or l-carnitine fumarate. Elevated Hcy levels can be casued by lack of methylb12, lack of methylfolate or lack of p5p (active form of inactive b6) and shows that the DNA replication process is broken prevednting cell formation and healing in many circumstances. About 99% of the time the right brand of sublingual methylb12 and adenosylb12 are 100 to 10,000 times more effective than hydroxycbl/cyanocbl. They along with Metafolin will restore DNA replication and healing within 3 days causing potassium to plunge as healing starts. The potassium needs to be spuplemented. With MMA being generated, adenosylb12 can casue ATP generation in the mitochindria to start in less than an hour. Just the basic 3 itemsd will work about 90% of time until they induce another deficiency which almost always happens.
Bill says
b12 and glutatione again
How far down the line do you go to stop glutathione precursors?
Alpha lipoic acid?
Selenium?
Milk thistle?
Vitamins c and e?
I have even read that b12 and folate are precursors.
Kira says
Bill, I have the same question. As far as I understand, impaired Glutathione production is a serious methylation issue, and I really don’t understand why would the supplements that work to increase its levels impair normal utilization of B12 and Folate… very confusing.
Fred says
I’ll try to wrap it up reasoanably concisely. I supplied the data and Rich V. supplied the biochemistry and it was what I hypothecized. The only precursors that so far have proven to be a problem so far are whey, NAC and l-glutamineAND NAC. The problem is probably dose related. The amounts produced by the methylation process of b12 and folate and other things like C produce normal amounts and no problems. So let’s look at the process itself that is the problem. After the glutathione is taken or the precursors and glutathione is in the blood, it combines vwih adenosylcobalamin, methylcobalamin and hydroxycobalamin, further oxidizing it. glutathionylcobalamin is totally inactive. To convert it back to active b12 requires an enzyme which not everybody has and available ATP which is often in short supply in a person lacking sufficient adenosylb12. Further there is a total of at most about 5mg of b12 in most bodies. 500mg of glutathione could convert every mg of b12 to inactive cobalamin 100 times over. So even if it is converted via an upjhill energy transaction to mb12 again, there is another glutathione molecule waiting to convert it to glutathionylcobalamin instantly. The glutathionylcobalmin is excreted about 10 times faster than mb12 and adb12 estimated by observing tmy urine thousands of times following injections and measuring the color exactly to compare amounts of b12 in the urine. So when there is no active b12 in the cell the methylfolate is then flushed out in a process called the “methyl trap”. I was not able to overcome this even taking 30mg of mb12 injections as 3x10mg a day and 4000mcg of metafolin. After discontinuing it then when I took 16mg of Metafolin the deficiency symptpms started retreating in hours and I then had mb12 startup reaction all over again with the 10mg injection, having not had any b12 startup at all for 5 years at that point. We had 10 people doing the trial, all of thwem having good to excellent results in proigress with the active b12 protocol. A few were taking NAC and l-glutatmine, a couple taking whey, a few taking glutathione IV infusions and a few taking oral reduced glutathione. Every one of them had essentially the same response, induced b12 and folatge deficiencies getting worse and wrose until discontinued and corrected with larger than normal methylfolate and mb12/adb12 and the possiblity of startup responses all over again, which I did have. I also had a big potassium drop all over again as methylation and cell formation started up again, Now almost 3 years later I still have not recovered fully from all the neurological damage the glutathione casued. Popularly the name of that effect caused by NAC is “NAC detox reaction” or some such and for glutathion it’s “glutathione detox reaction”. As it isn’t detox at all that misnomer causes the problems to be continued indefinitely and worsening until it potentially damges a person severely. The symptoms are those of folate deficiency symptoms starting in potentially hours followed by mb12 deficiency symptoms which start in hours to a couple of weeks and adb12 deficiency symptoms which may take 6 months to start.
People who appear to benefit are typically those that find the startup of mb12 and/or methylfolate and a few orther things “unbearable” and the like. A specific grouping is so super hypersensitive to l-carnitine and/or adb12. In the mb12/methylfolate sensitive group glutathione puts a stop to it in minutes to hours, again verifying it is shurtting down the b12 and folate which is causing an unbearable neurological startup, and it appears fully neuropsyc, not psychological. For these two groups of people being in b12 and folate deficiencies is more comfortable than going through healing..
Julee Ellison says
Fred, I had asked previously, but you didn’t respond. I am taking NAC because I’m a smoker. Although my B12 is high, my body doesn’t seem to be absorbing it. Is this due to taking the NAC?
Bill says
Hi Fred,
Thanks for getting back with me so fast and for the wealth of information.
I found your protocol and have been reading all of your writings for the last four days. I stopped the NAC, whey protein, a multi mineral complex that had glutamic acid in it and thorne b complex that had calcium folinate in it.
Four days ago I upped my dosage of methylfolate (wrong brand Life Extension), upped my jarrow b12 and started on some potassium. I don’t have all of the supplements for your protocol but I was already taking most of them and the rest will be here tomorrow. When I took the jarrow b12 before I only had it in my mouth for approx. ten minutes, I’m sure just learning the proper way to take it would help a lot of people.
The first three days I was wiped out severely fatigued but today was one of the best days I have had fatigue and brain fog wise in a long time. A lot of the time I’m so fatigued and brain fogged you can just see it all over my face, every once in a while for a day or a half of a day every couple of weeks I come out of it and you can see the life back in my eyes. Today was one of those days and I really think it had to do with your protocol. I’m excited about that because I’m just getting started with it and like I said I don’t even have all of the supplements yet.
I have been on a paleo diet for the last four months and I have lost weight and feel healthier but for the last month I have felt more fatigued and my restless leg syndrome has been worse. I was thinking this was just something my body was going thru in the healing process. But after reading your protocol I realized about a month ago I started taking NAC and drinking raw milk with whey protein everyday to increase glutathione in my body. So what you have said about it seems right one so far.
I have a couple of questions that I was hoping you could answer if you have the time. I know you wrote that NAC, whey protein, Glutamine, and folic acid were the only ones so far that messed up the methylation cycle but I had a few more supplements that I take and I was hoping you could tell me if you think there is any chance they could cause a problem.
Raw milk although not a supplement I have read where it helps with your glutathione levels. Do you think that drinking a 12oz glass a day could be of concern?
Next is just a list of supplements, do you see anything on this list that could cause a problem?
Astaxanathin
DHEA
Formadrol extreme (it’s an anti estrogen supplement)
Skullcap
Curcumin phytosome
Phosphatidyl serine
Pygeum extract
L tyrosine
Mucuna pruriens
Thanks for your help,
Bill says
Concerning b12 and glutathione
How am I going to get my glutathione levels up if I can’t take precursors because it will sweep folate and b12 from my body?
Does that mean I shouldn’t exercise because that increases glutathion?
I shouldn’t drink raw milk?
Whey protein will make me lose folate and b12?
Glutathione seems to be very important for a healthy body, I have been taking precursors to try to improve my brain function hoping this will alleviate some of my restless legs symptoms which seem to be from either low dopamine levels or poor dopamine uptake.
Any help on this subject would be appreciated.
Paul says
My restless leg syndrome was magnesium deficiency. I fixed that and away it went… I’ve read that iron deficiency can also cause it as well.
Chris Kresser says
As can iron overload, which is a lesser-known cause.
Bill says
For the last four months I have been taking 800mg a day of magnesium glycinate and it hasn’t helped my restless leg syndrome at all. I took high dosages of iron for a couple of months and it didn’t help either, I have tried many things to get rid of it even stupid stuff like putting a bar of soap in my bed. Many people say that a bar of soap stopped them from having restless legs and even though it sounds stupid when your desperate you will try anything.
It’s not just an an annoyance it is like being tortured. I only get it at night or if I am very fatigued during the day I have been taking ultram every day for years because of it and I would really like to stop, I’m sure that it’s not the healthiest thing to do but I couldn’t get by without it.
I’m now hoping that if I can improve this methylation cycle that it will have an effect on the restless leg syndrome.
From what I have researched it seems to be clear that it’s dopamine that’s causing the problem, either not enough produced or something wrong with the receptors.
Bill says
Off the subject a little bit here.
I’m not sure that Chris Kresser will ever have time to read this but if you do I would like to thank you.
I have been on a paleo type diet for four months and I feel healthier and I have lost 25 lbs.
I listen to all of your podcast and read all of your articles because I like the way you research the different topics and change what you said before when you learn something new.
I have listened to most of the paleo community’s podcast and read a lot of what they have written. There is a lot of good information out there but I like your approach and information that you put out is the best.
Thanks,
Fred says
Hi Bill,
Withion a week of getting the Enzymatic Therapy b12 Infusion, the Source Natural Dibencozide (adenosylb12), Metafolin, omega3 oils, l-carnitine fumararte and methylation startup/healing startup has started (low potassium signals startup) glutathione will be getting made very adequately. Lack of glutathione is a signal of broken methylation along withg 600 signa;lsd. it is not a cause, it is an effect. Glutathione will restore itself natrually as soon as methylation startup ovccurs. With Enzymatic Therapy mb12 and metafolin methylation typicalyl starts up in 4 hours to 3 days. With hydroxycobalamin, cyanocbl, folic acid and folinic acid methylation may never startup and my be made even worse. Don’t believe the myths of glutathione or you may be damagedyu it as I was.
cacey says
Hi,
I’m a 37 yr old mother of 3. I was diagnosed with pernicious anemia, Peripheral neuropathy and B12 deficieny back in February. After MRI/MRA, NCT and several blood tests, they started me on the sublingual B12. My level was 138. I was taking 5000mcg a day. I was no longer tired and the tingling had somewhat subsided. After about a month, the symptoms came back. So much so that in my sleep my arm and hand would be so cramped from tingling that my fingers would be clinched to a fist almost. I was tested again and my B12 was well over 2000. They put me on the sublingual at 1000mcg a week. I’ve done that on and off since then. I was ok for a month or two but now the symptoms are back. When will this vicious cycle end??? Should i be on injections instead? My neurologist also told me that i may have to repeat the NCT test over again to ensure there was no nerve damage. Is that true? That was the most cruel test i’ve ever done! Not looking foward to it.
Just looking to a long term solution.
thanks,
Fred says
Symptoms responding to methylb12 start coming back after 3 days without mb12. It takes 9 months of continuous use of mb12 and other nneeded items, to complete 1 round of healing . Lots of things willl start another round of healing if you add them etc. It takes 5 years if no backtracking to make the neurological healing complete, if it completes. I’m 9 years into it and inject 10mg 3x per day of mb12 to hold the damage of subacute combined degeneration at a more or less constant level. It never heals more and comes back stronger with the first missed dose. Your best chance is to get it the first time because each time one does a stop and start the heak\linfg response is weaker and less complete. Continue for life or you will just get the damage all over again. You may need both kinds, adb12 and mb12 as well as Metafolin and some other nutrients. for best healing.
CJ says
Thanks for your article. 51 y.o. husband just had B12 done and it was at the low end of normal. Now he is going for more testing. We are not vegan . He is not anemic. We follow a good diet with meats, fish, poultry, fruits veggies, eggs, low on grains and sugar. Not much in the way of processed food. Doesn’t drink or smoke. Would not have found this if a work health screen would not have indicated a high bilirubin level. Thankfully we have a doc who listened when I asked to check B12. Finally feel like we might be getting somewhere with the fatigue and other issues.
Rose says
Can you have normal RBC count but still be B12 deficient even though serum tests say otherwise?
Lucy says
I just recently got out of the hospital after what one doc called a TIA and another said could possibly be a migraine. I fell, couldn’t talk, swallow, my tongue felt incredibly thick– I had numbness and tingling in my right arm, dizziness and queasiness. MRI and CT were okay. Homocysteine levels were high.
I got a second opinion from another neurologist and it turned out that my B12 level was something like 190 (may have been 160… can’t remember). Since my “episode” I have felt terrible. My body aches, my arm still tingles from time to time, I’m exhausted, and I feel as if I am living in a fog. I want to get back to my normal, busy life.
My 2nd opinion doc prescribed oral B12 pills, but they have been making my stomach cramp and I’ve felt sick while taking them. This morning, he switched it over to injections. Although I am scared at the thought of taking shots, I am ready to do whatever I can to get everything back on track!
What made my levels drop so suddenly? I have a small spot on my stomach that both previous docs said was most likely melanoma. I am seeing a surgeon tomorrow about that. Can melanoma make B12 drop? How soon will the injections start to make a difference in how I feel?
Thanks for reading, and I’d appreciate any advice. This is a whole new ballgame for me!
Freddd says
Hi Lucy,
If the form of b12 was EFFECTIVE for you, methylb12 and adenosylb12 are the most effective for the most people. If it was effective it almost immediately induces any of several other deficiencies. The two almost 100% that get set off are potassium decrease which can make you horridly sick and which can be quickly relieved with 500mg of potassium or so. The other most common will be an induced folate deficiency relieved by Metafolin. These can occur by the second or third day after start an effective b12 as the cell formation apparatus starts up. Both of these could leave you feeling sick. An injection of hycbl or cyanocbl is unlikely to have that same effect as a sublingual mb12 or adb12 tablets. A typical balance of nutrients for those who experience this startup for people with normal folate handling is 50-5000mcg of mb12/adb12, 2000-3000mg of potassium titrated by effect, 2400-4000 Metafolin titrated by effect. If a person has folic acid or folinic acid assimilation problems then they may need 6000-8000mcg or 12,000-30,000mcg of Metafolin for sufficiency and healing of specific symptoms such as IBS, angular cheilitis and other folate deficiency characteristics.
Lucy says
So, (just to make sure I am clear) the only way to know for sure that I am taking the effective dose is if I AM sick afterwards due to the regulated B12 “inducing” other deficiencies?
I know the prescription is 1000 mcg of Cyanaocobalamin.
Freddd says
Hi Lucy,
People with mb12/adb12 and/or methylfolate deficiencies often have a whole lot of nonspecific and highly variable symptom including all of the chronic fatigue syndrome and fibromyalgia range of symptoms and then a lot including neuropathies. Generally they affect every system because one of the main subsets of activity gone wrong is that there is what is often called a “partial methylation block” and basically a lot of cells postpone being made piling up unrepaired damage. When the methylfolate/mb12/adb12 needed to form new cells are present the rate of cell formation goes way up, a flag of healing. The most common result is the sudden dropping of the serum potassium level. However, with “normal” typically being 3.5-5.0 and “dropping potassium” symptoms start about 4.2-4.3 in some people, like sudden night time spasms and other symptoms as potassium drops to what can become dangerous levels. So don’t disregard symptoms. There is a list of such symptoms somewhere above here on this page that can help distinguish between potassium and methylfolate low level symptoms. With Metafolin a little bit of it can start a lot more healing than can be maintained by that same amount so folate insufficiency symptoms occur.. So yes, these two flags of healing starting can also be troublesome if ignored. Follow the hints of healing which can be unpleasant while it is happening. However, taking potassium rapidly relieves low potassium symptoms and so does Metafolin with methylfolate insufficiency. Mb12 itself increases neurological awareness of all the problems, pains, emotions etc and the things that come up first are often the ones that disappear first. Cyanocobalamin is about 1% as effective as Jarrow or Enzymatic Therapy methylb12 taken daily. Brand and type matters a lot, makes all the difference in the world, literally.
Kira says
Hi Fred, so glad I caught you… I read a lot of your comments and most of it makes sense to me and I have a lot of symptoms that ppl here describe.
Here is a riddle:
My last too B12 tests showed as too high – more than 2000! So First my physician told me to take less of the B vitamin supplement (MegaFoods B complex – which if food based).
Second time I tested, I didn’t take this – or the Multi Vitamin that I also take – the day before the test, and it showed up as more than 2000 again. I also checked serum folate – came up 17.7, which is normal.
Fred, do you have any advise for me, may be you came across a situation like this?
My Doc told me to not only stop my B complex, but also a Multi that I am taking. It is a Multi Vit-A-Min by Emerald Labs and has Coenzyme Folic Acid (L-5 Methyl Tetrahydofolate) and B12 as Methylcobalamin, both of which if I understand you correctly are active bioavailable sources.
Freddd says
Hi Kira,
Telling somebody to stop b12 because the serum level is 2000pg/ml is total nonsense. It is built upon a non-understanding of b12 based on 60 years of research of inactive cobalamins, cyanocbl and hydroxycbl. A study in the UK a few years ago that admitted people based on SYMPTOMS, not test results. The average before treatment was over 700pg/ml with the higher folks over 1500pg/ml. 62% of the people who responded to methylb12 and healed their neuropathies would have been excluded from the trial by test results such as “high” serum level. 2000pg/ml as “high” is a statistical artifact that is meaningless. If one is looking for a level that has no deficiency symptoms look for a level over 15,000pg/ml. A 1mg injection (IM) causes an instantaneous serum level of 200,000pg/ml. A piece of liver or a plate of clams can raise a persons serum level by a 1000pg/ml. I maintain my serum level at about 200,000pg/ml 24/7 by subcutaneous injection of 10mg 3x per day as that is what is needed to maintain my nervous system because of previous deficiency damage. A serum level above 2000pg/ml is quite normal for anybody taking a supplement. The target for monthly injections (which keeps people alive as zombies but doesn’t heal them) is 300pg/ml at the end of the month. This is a level that I had 200 symptoms at and was dying from. I never went lower than that. A serum level of 5000ml/pg or thereabouts in a person who isn’t taking a supplement is generally caused by liver damage. People with CFS/FMS/MS/ALS/Parkinson’s/SupraNuclearPalsy all have genetically low cerebral fluid b12 levels no matter what the body level is and so have all this neurological damage that is casued over decades of deficiency. Further the serum level doesn’t tell active from junk cobalamin. Plants have 18 cobalamins that are not active in humans though they are absorbed and excreted. Even the active b12 test is pretty useless becasue most of the healing appears to be done with unbound b12 distributed by diffusion in the body while the diffusion is driven by high serum level like 200,000pg/ml. Even 100mcg absorbed from sublingual mb12 can temporarily increase serum level to 20,000pg/ml for an hour, and a deficienct person will feel that quickly. A trial is the only way to tell if mb12/adb12 can help as stated by study after study. I can point at research showing why every single test they use only shows how much damage already exists, and can’t show adequacy or sufficiency.
Rose says
I would have to agree about the accuracy or rather inaccuracy of the active B12 test. I had one done which stated my B12 levels were high, so I stopped taking B12. Next time round, my RBC count had fallen again. I’m still having problems as in the question below.
Bill VanHorn says
So is the best way to get the high levels is to just use more sublingual mb12?
Kira says
Thnx for your prompt reply Fred.
Even though I am not taking “junk” B-12, its the methyl form, would you say that I should continue and add the Folate as per your general recommendation?
I just ordered this one, hope its OK?
http://www.iherb.com/Doctor-s-Best-Best-Fully-Active-Folate-Featuring-Quatrefolic-400-mcg-90-Veggie-Caps/38067?at=0
Heidi says
Hi George, In all likelihood your daughter is just fine. The symptoms you describe sound neurological, (which could be from the food I suppose) which is why I posted a reply.
As a young girl (11), I experienced TIAs for two months prior to having a stroke. When you have a TIA (trans ischemic attack), your symptoms are transient. Mine lasted for no more than 5 minutes or so, then back to normal. My symptoms were slurred speech, slow reaction, nausea, sensitivity to noise and light, and one sided weakness. That’s why your post raised a red flag to me.
It is so unusual for a healthy child to have a stroke, but it happens, one in a million or two. I’m proof of that. Unfortunately, my TIAs weren’t recognized (I’m sure because it’s so rare) and now I have to cope with the effects of a stroke.
George says
Thanks for your comment, Heidi. As I mentioned in original post she improved quickly, had a good night sleep and next day was back to her normal.
I will definitely not give her 1mg B12 again. But now I am hesitant with even much smaller doze after this episode. And I am not sure whether it was caused by the supplement or it was food related.
Heidi says
I don’t want to alarm you, but those could be very serious symptoms you daughter is experiencing. If she vomits or if the delayed speech/reactions are only on one side of her body, you need to bring her to an emergency to be properly evaluated. It may be completely coincidental that this is occuring when you supplement her. Supplementing a child with adult doses should probably be done only under medical supervision.
George says
I am in my mid 40’s. I became vegetarian about 2 years ago and vegan about 1.5 year ago.
I saw improvements after the diet change but the real change happened after taking some B12 patches about a year ago.
Since then I’ve been taking Jarrow B12 1mg almost daily.
I have nail fungus on all fingers on one of the feet but since starting the B12 I can see continuous improvement. Nails became harder and not brittle and are growing and pushing the fungus away.
The nails on the healthy foot also turned better looking, healthier.
I feel it’s the B12 deficiency that caused the nail fungus or at least prevented the healing.
I also have cracked tongue which also seems to be making improvement.
I had eczema on my hands with very frequent flare-ups. This is all history now.
My skin seemed to have thickened all over my body and I believe that contributed to the eczema going away. Very often I had stuffed/running nose and allergy like symptoms (sneezing, itchy eyes).
This is gone now. I was very sensitive to temperature changes. I would start sneezing the moment I took my socks off during any season except the summer. This is no longer the case and I feel I tolerate low temperatures much better now. I used to sleep with socks since my feet always felt cold and sleeping without socks was not uncomfortable. Well, I am happy to report I have “normal” sleeping habit now and what a joy it is to be in bed bare foot!
At one point I had vertigo symptoms. The GP refered me to MRI which discovered nothing and even though they suggested some kind of therapy it all died out and nobody contacted me.
Well, knock on wood I no longer have the symptoms.
After a physical workout I feel I am making faster and better recovery than any time before.
I feel I have always been B12 deficient.
I have not taken any tests so I don’t have any figures to post. It is just my feeling based on my experience in the last two years.
As I said, during this period I made significant changes to my diet but my feeling is that B12 also played role in the changes I observed and it might even be the more important role.
But the real reason I am writing is this:
I gave B12 sublingual (Jarrow, 1mg) to my daughter (primary school age) on two occasions.
Two or three hours after that she was not feeling OK on both of these occasions.
The second time she complained of upset stomach (urge to vomit), sensitivity to light and noise, somewhat delayed speech/reactions and overall weakness. She had to lay down but recovered relatively quickly (an hour or two).
I am not sure if this was caused by the B12 I have given her.
But now I am scared to continue with this.
My intention was to give her 1mg once a week just as a precaution thinking that she might have inherited the condition from me.
Would appreciate any thoughts on this from the readers on this very helpful page.
Thanks!
anne marie says
Hi Chris,
My son is age 6 and diagnosed with ASD. At the the age 2, a serum test showed a 1348 B12 result.
We used methylB12 injections 2 to 3x a week for close to a year. He made good progress during that time but I can’t say it was the B12 b/c we also made dietary changes too. Injectons were difficult to give him so we stopped. Currently we are doing GAPS . Looking back I think his progress was the best during that time. But, I am confused, would a result of 1348 be a red flag for a defieciency?
Is there an easier way to supplement?
Vanessa says
Hi, do you know of a good physician in the UK? I have been suffering from IBS/IBD problems for a while. Also I can’t buy Designs for Health Super Liquid Folate in the UK. is there another sub-lingual folate you would recommend
Sharyn Cummings says
Did any of you get told that you had siliac disease (? sp) My sister has that but also many of the symptoms I have read here. I have had a gastroplasty with banding and have no B-12 deficiancies but want to keep up on this whereas my friends who have had gastric bypass surgery are/have B-12 deficiencies. Information is power as well as knowledge. What is “gut leakage”…is that from a stapling of the stomach that maybe a pulled staple creates…My stomach is whole, never cut away from stapled parts, as some gastric bypass surgeries were. Thank you
RR says
Fred, thanks for the tips. I normally avoid pills no matter how sick I am and try to heal through natural foods and rest which usually works. But in this case, I realized that I need a supplement for B12 given the long term symptoms I’ve been having. So I started on the B12 supplement alone, it’s the third day and I have suddenly developed a severe lower back pain with muscle cramp. It seems to be a symptom of low potassium caused due to healing? If so, how long does this condition last before the healing has progressed well enough for the potassium levels to go back up naturally? In other words, how long do you recommend taking potassium supplements? Finally can I drastically up potassium rich foods and avoid the supplement?
Fred says
HI RR,
Spasms like that are odten an early indicator of falling potassium and in me and some others happens as high as 4.2-4.3.
Potassium rich foods can be helpful if you do it realiably every day and use the supplements for quick relief (from food 14-18 hours from ingestion to peak serum level). I find I need 2400mg suppplemental daily in 5 doses to avoid problems like spasms most days. I have no answer as to how soon the need for potassium goes down. One person has reported such of which I am aware. Interstingly, anybody who has no rrsponse to mb12/Metafolin/adb12 does not have an increase in potassium need and also doesn’t have the symtoms. In my case the system had never worked right and I had decades of pent up dealing demand. My body is still improving at 64. I have been at this for 9 years but had Metafolin only the last 4.
RR says
I have been having symptoms of leg pain, numbness, weight loss, red eyes, burning sensation while urinating etc. for the last 1 year but no doctor was able to figure out. Luckily I chanced upon this blog recently and got a B12 test done right away. Just as I suspected, the result came back as 290 and now I am convinced this explains all my symptoms. So going to start on sublingual methycobalamain right away. Wondering if 1000mcg Jarrow (http://www.amazon.com/Jarrow-Formulas-Methyl-B12-1000mcg-Lozenges/dp/B002FJW3ZY/ref=pd_sim_hpc_1) is good enough? I see Jarrow also has another 5000mcg one which seems too high a dose?
Thanks a lot to everyone here for throwing light on this very key health issue.
Fred says
Hi RR,
The Jarrow 1mg is a 5 star quality mb12 supplement. When held under the lip for 45-120 minutes the approx absorbtion is 15-25% which means it is equivalent to a 200+-50mcg injection. When you start this with Metafolin if you were low enough to shut down a lot of healing, healing and cell formation will start up and potassium will plunge typically making a person feel really sick. It can even cause death if prolonged. Typically 2000-3000mg of additioanl potassium (potassium gluconate 99mg tablets timnes 20-30 per day in 5 doses or so) are3 needed tpo alleviate low potassium symptoms. Then typicalyy, the body that has started healing and the Metafolin titration typicall becomes adwquate at 2400-3200mcg for those without folate handling polymorphisms, 4000-6000mcg for those with folic acid only paradoxical folate deficiency and 15000mcg or so for those with folinic acid/veggie-folate paradoxical fiolate deficiency. This program usually needs a good assortment of vitamins and minerals to support high speed healing including omega3 oils and excluding glutathione or NAC which cause “detox”, which really is an induced severe folate and soon b12. deficiencies.
Kira says
Hi Fred, so glad I caught you… I read a lot of your comments and most of it makes sense to me and I have a lot of symptoms that ppl here describe.
Here is a riddle:
My last too B12 tests showed as too high – more than 2000! So First my physician told me to take less of the B vitamin supplement (MegaFoods B complex – which if food based).
Second time I tested, I didn’t take this – or the Multi Vitamin that I also take – the day before the test, and it showed up as more than 2000 again. I also checked serum folate – came up 17.7, which is normal.
Fred, do you have any advise for me, may be you came across a situation like this? My Doc told me to not only stop my B complex, but also a Multi that I am taking. It is a Multi Vit-A-Min by Emerald Labs and has Coenzyme Folic Acid (L-5 Methyl Tetrahydofolate) and B12 as Methylcobalamin, both of which if I understand you correctly are active bioavailable sources.
Kira says
Oh forgot to mention, that I also take L-Glutamine, NAC and ALA to help heal the leaky gut…
Fred says
Hi RR,
The Jarrow 1mg is a 5 star quality mb12 supplement. When held under the lip for 45-120 minutes the approx absorbtion is 15-25% which means it is equivalent to a 200+-50mcg injection and enough to start healing. When you start this with Metafolin if you were low enough to shut down a lot of healing, healing and cell formation will start up and potassium will plunge typically making a person feel really sick. It can even cause death if prolonged. Typically 2000-3000mg of additioanl potassium (potassium gluconate 99mg tablets timnes 20-30 per day in 5 doses or so) are needed to alleviate low potassium symptoms. Then typically, the body that has started healing and the Metafolin titration typicall becomes adwquate at 2400-3200mcg for those without folate handling polymorphisms, 4000-6000mcg for those with folic acid only paradoxical folate deficiency and 15000mcg or so for those with folinic acid/veggie-folate paradoxical fiolate deficiency. This program usually needs a good assortment of vitamins and minerals to support high speed healing including omega3 oils and excluding glutathione or NAC which cause “detox”, which really is an induced severe folate and soon b12. deficiencies.
Julee Ellison says
Fred, I have been taking the Now liquid form (you leave it in your mouth for 30 seconds). Is that a good form, or should I switch to the Jarrow? Also, I see that you mention NAC, which I have been taking for a year or more … is that not good for me? I take it because I’m a smoker.
Jay says
I was very sick for about five months – I felt like I had the flu 24/7. I was exhausted, dizzy, depressed, no appetite (lost 20 pounds), had night sweats, tremors, numbness in thumbs and feet, blurry vision. My blood test showed a slightly high MCH value, which my doctor said was not significant. I asked about B12 and was told that my level was normal at 250. I decided on my own to take supplements and have been taking 3 1,000 mcg of sublingual methylcobalamin tablets a day for about two months….and feel much better. Not 100% but I have energy again. I’m convinced that was the problem. Thank heavens I don’t have to rely on my doctor for treatment for this!
Eilidh says
Hi,
Does anyone know of any affects of following a Paleo diet. I have Pernicious Anemia and would like to have better energy levels. I was really lucky as I was getting tested for diabetes and the docs found I had really low B12 levels. I get B12 injections every 3 months and the only symptoms I have are tiredness,anxiety and tinnitus. None are too bad. Was thinking of switching to a Paleo diet to see if it could help also wondered if food allergies may be related?
Any advice welcomed 🙂
Fred says
Hi Eilidh,
If you were to take Jarrow or Enzymatic Therapy mb12 and adenosylb12 (dibenvozide, and Metafolin and a few other things all of the tiredness and others can go away. However, with the anxiety as a symptoms that would appear to indicagte that you will likely have some hypersensitivitities to certain deficient nutrients (dibencozide, mb12, l-carnitine fumarate) and some others. A careful titration can take care of that and actually heal all your symptoms. Otherwise, they will continue to worsen because hydroxcbl once each 3 months only does about 1% of what a real b12 can do.
David YYYYY says
please could any body help me understand what i have. I’m 52 years old f email @ the beginning I had severe diarrhea last 10 days after antibiotic every thing back to normal..MY real problem I feel MY feet first then both legs to my waist feel always numb then i couldn’t walk then numbness in my hands finally after spending 4 days in hospital . diagnosed with B12 deficiency ( 90 % ) and they still doing tests . mean time i feel i m crippled cants get up without help cant walk they gave me B12 shots Suppose to take 4 & days then once a month and doctors said its going to take few weeks before healing question is do i have b12 deficiency or something else forgot to mention pain in the back lumbar area.
Deb Hickey says
David,
My I ask how was your health before this recent event? How long ago did this happen?
Did you ever see my story?
http://www.youtube.com/watch?v=CH-N3ktF25g
It took me over a year before all symptoms reverse.
For over 7 years I sufferd with ulcerative colitis (almost having my colon removed) with Chronic Fatigue, a Sleep Disorder (Catathrenia), Fibromyalgia, Nerve Damage, Hair Loss, Bleeding Gums, Unexplainable Horrific Uterine Bleed, Chronic Inflation of the Bladder, High blood pressure, nerve damage and was in the process of being tested for MS or possible stroke. Taking 27 pills a day, reacting to a lot of medications.
I need to still take weekly B12 injections, now “I feel like a million bucks!”
Jeneva says
I have a high SED rate because of Lupus, I am told. Also, severe osteoporosis, heavy feeling in legs, joint pain, migraines and blue fingertips, along with red, swollen and painful “bumps” under the skin of my fingers. I’m 98 pounds, eat well, and take no medications, because I suffer adverse side effects from all prescribed meds. Also, shortness of breath, and extreme fatigue. Every physician says my blood tests, with the exception of the ANA and SED, are within normal limits. Could I be suffering from a B-12 deficiency, even though my result was 612 ? Any helpful comments would be gratefully appreciated. Thank you for such an informative, helpful site ! 🙂
Freddd says
Hi Jeneva,
A serum level of 612pg/ml doesn’t preclude having b12 deficiencies. In at least one study in which admission was by symptoms, the average at the start of the study of the people who responded to mb12 was over 700 with the highest persons over 1500pg/ml.
Some of your symptoms could be caused by b12 deficiencies. Both brain/cord deficiencies can be present regardless of serum level as the CSF is quite separate from the body in this regard.
B12 deficiencies are also implicated in some autoimmune diseases. With the information given here it is impossible to really know.
“because I suffer adverse side effects from all prescribed meds.”
Even this is often characteristic of b12 deficiencies but some of the other things are not. If there is b12 deficiency going on there is also something else likely going on.
In a study published a few years ago, mb12 was the only supplement that made a difference in a study of elderly women in preventing a second hip fracture. It can also be implicated in inability to gain weight along with some cofactors that could also make a difference, especially if it is an inability to grow muscle. Also severe fatigue can be caused by these deficiencies, such as chronic fatigue syndrome. The problem is that b12 deficiency symptoms are generally non specific and it is the combination and volume that indicates b12 deficiency. A properly done trial can be definitive if the most common missing cofactors are also included. Good luck.
If you come over to a CFS/FMS forum I post on regularly, sign up and post a private conversation to me with your email address and ask for the Excel questionnaire I will send that in a few days and it will ask you a complete history about more than 400 symptoms, signs, characteristics that will help me see what I think might be going on. http://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/
LisaV says
Freddd,
This is extremely helpful. Thank you! I’ll ask my doc for the tests and experiment with your suggestions, warnings included.
On supplement details:
I take Jarrow’s Methylfolate (6S)-5-Methyl TetraHydroFolate. Is this an adequate source of folate/substitute for Metafolin?
I’ve started feeling worse after taking 200-400mg doses of potassium amino acid chelate (increased fatigue, brain fog, breathing difficulty) whereas it used to make me feel much better. This could be unrelated but I’m wondering if potassium can increase the need for some other nutrient that I’m not getting.
Do you have any suggestions for dose and brand for a B-complex supplement? I’m noticing odd symptoms like a scalloped tongue that may be from other B vitamins getting out of balance. I’m not taking any folic acid or folinic acid.
Should all glutathione precursors be avoided, including selenium, Vitamin E, turmeric, asparagus, avocado, and garlic?
Thanks again so much!
Finndian says
LisaV,
Scalloped tongue means you are very hypothyroid and have an enlarged tongue that is pressing on your teeth… leaving dents.
Until you get your metabolism up to speed with enough Armour you will continue having these hypo symptoms and food reactions because your body isn’t able to fully break down your food… leading to nutritional deficiencies.
Yes… potassium and magnesium go hand in hand and if you are deficient in one then you are likely deficient in the other. Hypo’s lose lots of magnesium. Try magnesium Glycinate or the new Magnesium L-Threonate.
Trying to cure deficiencies while hypothyroid is fruitless. If you don’t see the test for Free T3 in your blood work I would get a new doctor asap.
LisaV says
Thanks Finndian. Free T3 is coming in the next round of tests. Taking small amounts of Armour (30mg) has my TSH crashing down to 0.7 so taking more Armour may not be the key. I’m trying to get to the underlying reason for my low thyroid function which is why I’m addressing an iodine deficiency and a likely b12 deficiency (I don’t produce HCl so the parietal cells in my stomach also may not be producing the intrinsic factor needed for b12 absorption). Unfortunately waiting to treat the b12 deficiency may be unwise. Likewise I’m testing for iron overload, after finding that my water is high in iron, which would adversely affect the thyroid…as well as other things including gut flora. You could say I’m going for the multi-pronged approach.
Finndian says
LisaV, the only time I’ve ever seen someone successfully stop thyroid hormone was with Iodine dosing… but that was only one person and later I found out he committed suicide! Depression from hypothyroidism??
They can help lead you through iodine dosing here:
http://health.groups.yahoo.com/group/iodine/
You call it ‘crashing’ when your TSH hits .7 but a doctor at Keck school of medicine at USC (Dr Lopresti) told me years ago that with autoimmune thyroiditis that I wouldn’t feel normal until I had a TSH under 1. I just didn’t know then exactly how far under 1 it needed to be. Even if you only have low thyroid function you need to dose Armour based on how you FEEL until you find out if there is a reversible reason you have it in the first place. Being chronically hypothyroid is killing you slowly.
Armour thyroid has been used to treat hypothyroidism for 130 years. Until 1972 or so the way it was used is that you increased the dosage by a quarter grain until you felt better. Once the TSH test appeared the doctor felt like he had to tell YOU when you should feel better and if you didn’t feel better than there was something mysterious about you OR you were nutty. Then he prescribed drugs to mask your remaining hypo symptoms.
So here it is 40 years of drugs to mask what are clearly hypothyroid symptoms because the doctors are over relying on the TSH test. You clearly present HYPO symptoms especially with the scalloped tongue. Almost all your other symptoms are clearly HYPO signs. How many signs does your doctor need for gods sakes?
You need to find a doctor that does not rely so heavily on TSH and find one that regularly checks FREE T3 and FREE T4… both of which need to be in the upper range of normal. Only then will all your stomach problems disappear, the crashing fatigue from lack of T3 will stop and your blood sugar will normalize.
Not taking enough Armour often makes you feel worse than not taking any hormone at all. My TSH is something like .004 but my FREE T3 and FREE T4 are well within normal range but on the high end.
Finally, I have my life back! If I’m supposed to be HYPER with a TSH at .004 then I’d like someone to prove it. I have no tremor, no fast heart rate, no sweating… no excessive calcium in my urine. I’ve checked everything.
Its ridiculous that I had to suffer for a full decade because some idiotic myth about TSH that never appeared! I haven’t looked this good in so long so I tell myself I didn’t really lose 10 years of my life feeling terrible. Its amazing that I didn’t kill myself listening to certain doctors for so long.
Long term untreated and under-treated hypothyroidism causes heart problems and host of other health issues… not to mention being hypothyroid causes endless nutritional deficiencies if left unchecked. You’ll be trying to plug holes in the dam while another leak bursts through behind you if you ignore the hypo symptoms and try to address the nutritional side of things first. I tried it for years and spent thousands! The industry that feeds off under-treated thyroid sufferers is massive and shameless. Its full of some well meaning people but more than a few charlatans. Be careful.
This website was useful to me when I decided to find a doctor to help me dose Armour as it should be dosed and as it was for 90 years before the advent of the TSH test.
http://www.stopthethyroidmadness.com/
Good luck!
LisaV says
Could I be making myself worse with b12?
I started supplementing with sublingual mb12 a week ago after a lot of research led me to believe I might have a B12 deficiency. Unfortunately I didn’t test first so now it may be difficult to really tell what’s going on. Though at the time I honestly thought I might die before I could make it to my doctor’s apt this coming Monday.
The symptoms that led me to try sublingual mb12:
Tingling and pain in arms, difficulty breathing (including waking myself up in the middle of the night gasping for air), brain fog and confusion, crushing fatigue, dizzy, sore tongue, burning feet, odd emotionality, pin prick pain.
I am also hypothyroid (low TSH, T4 and T3) and take Armour, have gut dysbiosis and food allergies that I’ve been treating with the GAPS diet for 2 years, and blood sugar issues (though not to the point of a diagnosis). I’ve been to various doctors in the last 4 years an nobody seems to have any clue what’s wrong with me.
A week ago I started with a SL mb12 1000mcg under the tongue and noticed a marked improvement especially in the tingling, breathing and brain fog, but crashed pretty hard about 5 hours later. The next day I took another 1000mcg under the tongue every time I started to crash and by yesterday I was taking 30mg (six 5mg SL) spaced throughout the day. A couple of days in I also started taking potassium and folate which are now up to 2000mg potassium and 2400mg folate. I also take a host of other supplements including cod liver oil, mag, C, D3, HCl, digestive enzymes.
I occasionally experience a few hours of feeling OK but am mostly in a crash – back to former symptom levels or worse. Could I be making myself worse with B12? I am about to start cutting back on the mb12 but wanted to see if anyone here might have suggestions for me. This stuff is pretty scary.
I’ll go to the doc on Monday and try to convince her to test me for a number of things. If anyone knows a test that would be useful now that I’ve started supplementing with b12 I’d love to hear about it.
Sorry for the long post. I wanted to offer as much info as possible. Thanks for any help.
Freddd says
Hi LisaV,
Here is a piece I have been revising for 9 years. It’s basically all the reasons that your attempted b12 therapy might not work. People without b12 deficiency sympotms have no response of any kind to any quantity of mb12 or adb12. Brand is critical. All basic vitamins and minerals are essential. So the following have been shown to be the key factors in starting healing or keeping it going. Mb12, adb12, Metafolin, zinc, vit c, vit A, vit D, magnesium, p5p, l-carnitne fumarate, SAM-e. Glutathione/NAC/whey can completely prevent these all from being effective and and make it far far worse.
Since this was revised last, a lot more has been learned about paradoxical folate deficiency. The approximate metafolin requirements appear to be tied to the degree of paradoxical folate deficiency a person has; 2400-3200mcg ot so for no paradoxical folate deficiency, 6000-8000mcg for folic acid induced paradoxical foalte deficiency and 12mg-30mg for folinic acid/veggie food folate paradoxcical folate deficiency.
Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, neck muscles, Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.
Group 2a – Both
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Group 2b – Either or both
Headache, Increased malaise, Fatigue
Group 3 – Induced and/or Paradoxical Folate deficiency or insufficiency
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
Group 4 – hydroxcbl or deteriorated mb12, adb12 or cyanocbl
Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
If the increased symptoms are in the groups specifeid in the above you could probably use more Metafolin and/or potassium. The folate insufficincy symptoms and folate deficiency symptoms are the same except for intensity.
If a person has a gross insufficiency of adb12 and/or l-carnitine fumarate then there won’t be enough ATP for mb12 to anything, it being easily exhausted. If you were to try these two items take adb12 (Source Natural or Dibol Dibencozide), and after a couple of doses, starting with crumbs under the lip and working up, try a very small amount of l-carniitne fumarate (Jarrow or Drs Best). If you have anxiety routinely, and if taking benzos, might have what is often called “tolerance withdrawal”, taking more than 1 mg of L-carnitjne fumarate and may even 200mcg, will be intolerably intense and you will need to start titrating at 100mcg and that can most easily be done with Jarrow liquid carnitine.
Between the above and the reasons below there is a high probabilty that the casue of your problem is listed. Take the brands listed as 100% serious. They are incomparably better. I take a combination of both every day because they are not identical. Good luck. If you can give more information perhaps I can give you some additional ideas.
REASONS WHY B12 AND FOLATE THERAPIES DON’T WORK FOR MANY PEOPLE
Version 2.0 – 03/10/11
Version 2.1 – 05/08/11
Version 2.2 – 06/02/12
1. They take an inactive b12, either cyanob12 or hydroxyb12. The research validating their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesnt work, oh well, thats the accepted therapy. There is no dose proportionate healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesnt work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
6. They dont take BOTH active b12s.
7. They dont take enough active b12s for the purpose.
8. Lack of methylfolate
9. Folic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called “detox” symptoms.
10. Folinic acid is taken which can block at least 10 times as much methylfolate from being active inducing folate deficiency even if methylfolate is also taken. These induced deficiency symptoms are often called “detox” symptoms.
11. Lack of other critical cofactors.
12. Lack of basic cofactors
13. Glutathione, glutathione direct precursors or NAC is taken causing what is often called “detox” while actually being induced folate and b12 deficiencies.
Freddd says
LisaV, One thing I forgot to mention, if it i being seriously held up by lack of adb12 and/or l-carnitne fumarate, you might test for elevated uMMA. Also, if you have CSF/CNS deficiencies there could be low CSF cobalamin and levated CSF-MMA and/or elevated Hcy. Also if a lack of p5p/b6 then elevated serun Hcy is possible. The blood won’t have changed yet so you can test for MCV > 94, MCH > 35, low platelet count, too many multiusegmented nutriphils, low cellular methylfolate (serum folates is meaningless in your present situation) and if you have paradoxical folate deficiency you may have high serum folic acid and folinic acid and still be very deficient as they block methylfolate in such people.
If you do have anxiety and deificencies of carrnitine and/or adb12 when these are added in normal amounts you could have MASSIVE limbic system reponses in the form of panic, fear, anger, rage, suden extreme depression and the like.
Michelle Renner says
Can a B12 deficiency cause numbness all over the body? I mean I’m not completely numb but I have a lowered sensation all over my body. I have an anxiety disorder, but I don’t think that has anything to do with it. I also experienced vertigo, it started of with my legs falling asleep, and now the numbness. My mind is telling me that I might have MS, or a brain tumor. I’m very scared. So is it possible that a b12 deficiency could cause this? Or am I doomed. I have hypochondria too, but that has absolutely nothing to do with this. This numbness has been lasting for a few days. Please reply back.
Freddd says
Hi Michell,
With a b12 deficiency and having those symptoms, a person would be pretty far along and lilely have 100+ symptoms is multiple body systems. Ocassionally, some people have a specific type of mb12 and cofactor deficiency which only affects the CNS, brain and cord. While MS may styart out as a neurological only mb12 deficiency, it has demyelinations visible on MRI and is usually 1 sided where-as Sub Acute Combined degeneration usually affects both sides of the body and is also caused by the demyelination from b12 deficiency. There is another area of the brain that may be affected by affecting a differnt part of the brain and also be deficient of adb12 or l-carnitine which causes lots of anxiety and fear. These usually cause people to be hyperresponsive to certain supplements because of the deficiencies. At some point these things stop being deficiencies per se and become damage and the names it is given depend on where the damage is. If it is caused by these deficiencies further damage might be able to be stoppped and some percentage of the damage corrected. It’s hard to say. I haven’t seen this pattern of symptoms before with b12 and cofactor deficiencies. Of course you may not have included a multitude of other symptoms becasue they don’t seem related and those are what makes b12 deficiencies confusing to diagnose for many and also are very defining of it’s existance. This sounds serious and you should have a neurolgical workup with neurologist. If it is one of these neurological situations cuased by a CSF/CNS only b12 deficiency, if it isn’t too advanced (and nobody knows where that line is) the vitamins might be helpful if done correctly witht the exactly correct vitamines, right down to the brands becasue they are no all the same and how they are done sionce if started incorrectly they could cause such intloerable responses as to make it immpossible to continue them Good luck and get checked out quickly. It probably wouldn’t hurt to get started very cautiously on the possibly correct vitamins but I also would not delay seeing a doctor ASAP. Also, if the damage is being casued by some variation of b12 neurological deficiency, each day delay starting the vitamins can increase the amount of permanent damage. I would have to see your answers to a systems quesrtionaire before I could even begin to suggest what vitamins and how.
Matt says
My B12 levels are at 133 according to a test done last week, which, very fortunately for me, was included as part of a standard blood panel for a basic check-up. I’ve never been tested for B12 before (despite being a non-supplement using vegetarian/vegan for the past 40 years—and yes, I should know better—please don’t rub it in), and probably wouldn’t have thought to ask for the test now, as I’ve experienced few to none of the symptoms described by others on this site. Very healthy and active, no fatigue, other blood markers all good to excellent. The only real symptom, which has appeared fairly recently, is some mild tingling of the extremities.
Clearly, though, a B12 reading of 133 needs to be addressed. My question concerns the recommended protocol. The treatments suggested here by Freddd and others (very high doses of active B12, active folate, B complex, potassium, omega 3s, and many other co-factors) seem fairly aggressive and directed at people with truly debilitating symptoms. Since that is not my case, would it be more appropriate to begin with a more modest program, and what might that be? Or is it still important to take a quite aggressive approach? I find that often less is more, but perhaps this is not one of those times. Thanks for any suggestions.
Freddd says
Matt, First, you mis-represent the active protocol as “high” b12 doses. Often it is appropriate to titrate starting at arounfg 10mcg. Second, that the numbers seem high is first with a sublingual, one absonbs at best a quarter, typically 20% of the nominal dose so irt takes a 5mg nominal dose to supply the approx 1mg absorbed as in an injection. Additionally each person is titrating to effecrtiveness for their problems. I do not advocate some universal dose for all reasons. Thenb it also has to be in balance wioth the other functional items and that is where most trip up. Further the very high dose I take, 30mg injected daily plus 33mg of sublingual for 2 hpours yield approx 11mgs, are demostrated pragmatically needed for hlding my nnerve damage at bay and keep it from wporsenong noticably at a high rate. I am revising the zones of healing with b12 and will post that here in a day or two.
At your level of 133, you could have several hundred symptoms including brain and spinal cord damage that may or may not yet be apparant. I doubt my level ever went that low. May people will simply die before their body would tolerate that level. To maintain brain and cord funtionality I need an average level of 200,000. People without the brain and cord damage can likely do very well at an average level of perhaps 6000-12,000pg/ml. How much does it take to get to keep a person from ending up in a wheel chair wearing a diaper? Perhpas that is the dose the specific person needs? Unless the person is weilling to accept “oh, they say permanent damage” and on cyanocbl, hydroxcbl or 1mg a month it is permanent damage. The catch is that on 40mg/day it isn’t permanent damage. That is what the Japanese research indicates and my own experience and that of others indicates. Correct your problems before you are that damaged. Right now sublinguals can most likely do the trick if you don’t show a lot of severe damage. A 1000mcg of prevention beats 40,000mcg of cure.
Matt says
Thanks for the input, Freddd. I’ll look for your upcoming posts.
shirley says
Hi
I have low B12 and get tingly figgers and feet and fatigue. I wondered if anybody gets hoarseness?
Also a friend whose B12 is 274(and dr says this is ok) gets tingly lips and tongue and bitter taste in mouth and I wondered if anybody has had this connected to low B12?
many thanks for any advice
Finndian says
I get hoarseness (and canker sores) as a sign of low B12 now. A couple years ago I went to the alternative doctor for my twice a year vitamin IV drip. I have hypothyroidism and just get deficient in random nutrients probably due to impaired stomach acids caused by hypothyroidism; not being able to fully digest foods.
For the first time ever I asked the doctor for 100,000 mgs of vitamin C to be added to this IV to see it would help with my work-out fatigue. The next day I started to become hoarse and within 3 days I had lost my voice. After a month of doctors, MRI’s and scopes down my throat we finally determined that my vocal cord was paralyzed…. the nerve just quit firing for no reason.
My research uncovered that there is some evidence that vitamin C in high doses dramatically lowers B12. I didn’t know that but I did know that I was already probably low in B12 because of other testing. I began injecting methylcobalamin shortly after and recovered in a couple months and months of vocal therapy. It normally takes longer to recover from idiopathic vocal cord paralysis. I had other nerve conditions in my upper back for years prior.
Now, If I don’t keep up with my B12 injections I will randomly get hoarse and my canker sores will make a reappearance. Finding that my low B12 was causing my reoccurring canker sores after a lifetime of them was one of the greatest discoveries of my life… to be free of that type of pain is amazing
http://www.sciencedaily.com/releases/2009/02/090210092732.htm
Not sure if its the hypothyroidism causing the need for regular B12 injections or the DNA gene variations I have that predispose me to need extra B12 but I need to keep on top of this for the rest of my life or within 3 months its canker sores and more nerve paralysis for me.
shirley says
Thanks for the info about hoarseness. Very interesting.
Take care
Finndian says
One thing I should point out since I actually saw with a camera what my one vocal cord was doing to make my voice hoarse. It was weak and wasn’t fully doing the work that the other one was doing… not meeting it midway. This flabby looking vocal cord vibrated at a slower speed as well. When it progress to full paralysis the whole wall of the throat was limp looking and I tried to make sounds. That side of the vocal cords began to pool saliva and a constant need to clear my throat or drink water was very irritating.
Google it… you’ll see other forums mentioning the B12/vocal cord link. Like this one.
“I had a very rough and raspy voice for more than a decade. Before that and now I have a smooth clear first tenor voice. My voice cleared up in mid word when I started taking methylb12. It was caused by a neurological problem caused by vitamin b12 deficiency, along with a lot of other symptoms. Also, the deficiency had made my mucous very thick and sticky with a consistancy like stiff jelly. Only certain brands of sublingual methylb12 work and other cofactors are needed with it to.”
Since doctors are not trained in nutrition we really need to take these matters into our own hands or suffer the consequences and that often means some drug to mask the symptoms of a simple nutritional deficiency.
shirley says
The constant clearing of the throat sound familiar! I will try some methylb 12 , my doctor here in uk was not keen on this ,but offers up no alternative suggestion.
Thanks for your input.
Stay well!
Freddd says
Shirley,
Every symptom you mention for borth people are symtpoms I had with methylb12 and adb12 and methylfolate deficencies and they are all gone and have been for years with the needed items.
Lisa says
Chris, Do you think that those of us with low or no stomach acid production would likely also be deficient in production of intrinsic factor due to the fact that they’re both produced by the parietal cells in the stomach? I haven’t seen these deficiencies talked about in tandem very much. In addition to supplementing with Betaine HLC and B12 for better health do you know of a way to increase the proper functioning of the parietal cells themselves?
I appreciate your penchant for research and all that you’ve shared.
Finndian says
Fredd,
Why not Acetyl-L-carnitine instead of L-carnitine fumarate? I have one continuing problem and that is when I work out a lot I get hypothyroid and my T3 levels drop. My cortisol level spike at 4am or so and I although I am totally exhausted I am unable to sleep. I am muscular and healthy but must take over 2 day breaks between workouts to avoid a melt down of hypothyroid symptoms. My system is just strongly reacting to physical stress.
I’m taking potassium now along with my weekly methylcobalamin injections. Maybe Carnitine will help?
Finndian says
BTW…. I was considering starting this mixture. What do you think?
http://organicpharmacy.org/products/RiboCarnitine-Q10
Freddd says
Finndian,
Daily Sublingual Jarrow and/or Enzymartic therepy will work better than 99% of injectable mb12 and work FAR better than weekly mb12 injections. I do inject 30mg of mb12 every day as 3x 10mg subcutaneously which is what keeps my Subacute combined degneration from progressing but the Jarrow and ET are better qualitativly and I take both. What will really pick up your muscles and energy is adenosylb12 (Dibencozide). Dibol 10mg caps are said to be adequate if the powder is used sublingually and Source Naturals Dibencozide 10mg sublinguals are adequate held under the upper lip for an hour it possible. The reason for the L-carnitine fumarate is that it works far better than any other variety and may be blocked by a mix. .A single 10mg dose of dibencozide like that once a week is usually sufficient for matenance for most after an intial dose a day for a week. Mb12 how lasts only a day or two and symptoms begin returning by day 3. In addition, when the brand of carnitine makes a difference it is most always Jarrow or Doctors Best both made of Sigma Tau Carnitine from Germany.
Don’t try to micromanage your thyroid while these things are starting up. The changes happen faster than you can affect them with thyroid hormone. If a person is in active phase of Hashimotot’s thyroiditis some of these people have had the auto immune disease stop with enough of the right b12s. There is insufficient information to say anthing for sure on that. Hypothyroid affects about 50% of people with low b12 and often low folate or unable to utilize folic acid.
Benjamin Lynch, ND says
Fredd –
You state that one may experience drops in potassium while beginning methylcobalamin – or while taking high amounts of MB12.
I do know that potassium may interfere with b12 absorption; however, where is the research citiing that potassium levels drop while taking methylcobalamin – or is it clinically seen?
I am wondering if the benefit seen by taking potassium is that you are simply reducing the absorption of excessive amounts of MB12 – and the answer then would be to simply reduce the amount of MB12 taken – rather than play with high levels of potassium.
It is not a small thing for people to be taking 1+ gram of potassium and can be very dangerous. Potassium levels are tightly controlled and if too elevated, may cause serious cardiovascular problems.
Thanks
Dr Lynch
Freddd says
Benjamin, First I will post the entire decision tree based on observational analysis of some thousands of people over 10 years, the specific parts dealing with “detox”, “detox” when starting methylation programs, “detox” from adding any number of vitamins and supplements to an existing program, “detox” from NAC, “detox” from glutathione and porecursor sets, and “detox” from whey. Then I will describe how it came about and answer your specific questions.
TRANSLATION OF POPULAR DESCRIPTIVE TERMS TO PRACTICAL CORRECTIONS WITH DECISION TREE – beta
version 1.2 – 05/28/12
During “methylation” treatments for FMS, CFS, ME, MS. Cures or long term remissions can occur if the clues are understood and followed. Also suggestive of possible ways to detect impending MS, ALS and Parkinson’s 10-20 years before diagnosis and hopefully prevent.
There are several popular nutritional treatments and variations for FMS, ME, CFIDS, CFS and several other syndrome names. There is at least one study being conducted for use in MS of exactly the same nutrients because people are having success on them. Many of the same nutritional supplements may be taken in the various programs and by people in general just trying to be healthy.
Under the banner of “partial methylation block” theory there are a number of programs that center on several forms of cobalamin and of folate with additional vitamins, minerals and supplements. The number and completeness of those other items determine if it is the “full methylation protocol” or “simplified methylation protocol” (SMP). Under the banner of “Functional Deficiency Diseases” which include “active b12 deficiencies (4 deficiencies)” and “induced or paradoxical folate deficiency” there is the “Active b12 and folate protocol” (ABP).
Whatever names these diseases are called they deal with a universe of symptoms that include up to 400 symptoms and signs, depending upon granularity (ie “peripheral neuropathy” encompasses dozens of possible symptoms and signs). They are in several main categories. They might be grouped as endothelial, epithelial, immune, neurological, blood, and other tissues. Or they might be classified as Skin, GI, lung, heart, veins, arteries, neurological –brain, neurological – cord, neurological – peripheral, neurological – other, neuro-psyc, blood, mood, personality etc.
WHEN TREATED
All of these are flags indicating healing is occurring. Minimizing nervous system response reduces or stops healing, especially of the nervous system. Minimizing ATP response prevents normalization of biochemistry.
1 – Low potassium, almost everybody when healing starts. – often called “detox”
2 – Low folate symptoms even with small doses of Metafolin – often called “detox”
3 – Nervous system activation, everything is perceived as more intense – often called “detox”
4 – ATP activation, everything is more energetic and intense – often called “detox”
Whatever distinctions are made, a key characteristic is that symptoms, once well developed, of these syndromes will include multiple tissue types, multiple systems. To the casual observer they appear to be not connected. After all what do blood abnormalities, eczema, irritable bowel syndrome, daily nausea and vomiting, severe fatigue, muscle atrophy, asthma, hypersensitive nervous system responses, muscle pains, MCS, mood and personality changes, widespread body pain, peripheral neuropathy, poly neuropathies, burning bladder, poor immune response, FMS, CFS, autoimmune response, raspy voice, unable to focus eyes, faded vision, multi sensory hallucinations and many others have in common? They all share a common set of nutritional deficiency causes. Some will argue that these are not “absolute deficiencies” but rather “functional deficiencies”. For treatment purposes that doesn’t matter unless one is trying to restrict access to treatment (insurance won’t cover)
The more severely affected a person is the harder hitting the vitamins are when started. There are several initial responses that may occur. In the popular terminology most of them are lumped together under the term “DETOX” reaction or response. These responses may start in minutes to days depending up many circumstances.
The supplements being considered here are methylcobalamin, adenosylcobalamin, hydroxycobalamin, cyanocobalamin, folic acid, folinic acid, Metafolin-methylfolate, SAM-e, L-carnitine, glutathione, NAC (N-acetyl cysteine), Cerefolin-NAC, Whey, Metanx, Deplin.
More rarely Vitamins D – A – C, magnesium, zinc, p5p
Glutathione, NAC, Cerefolin-NAC, whey are all glutathione or glutathione precursors. The NAC typically overpowers the Cerefolin completely.
Metafolin, methylfolate, Deplin are all methylfolate
Metanx is Metafolin, methylb12 and P5P
B12 forms, in order of effectiveness and likelihood of causing the responses listed here are methylcbl, adenosylcbl, hydroxycbl, cyanocbl
Typically several of these symptoms will appear suddenly with more appearing and worsening over time if corrections are not made. While these groups of symptoms are called “detox” by some alternative practitioners and many people otherwise knowledgeable about vitamins and supplements, depending upon what theories they are operating under, use this term. Typically they are working on a “toxin” theory of CFS/FMS/ME/MCS etc and that these vitamins and supplements mobilize the toxins which then cause all sorts of symptoms in the groups listed. As the “translations” are made it is clear that actual “detox” if it exists, has nothing to do with these symptoms and they can be dangerous to ignore. If it is “detox” in an actual sense, then it is in what is left after these other things are accounted for and/or corrected, perhaps 5-10% of the total initial number. Also, co-morbidities often show up in this way..
Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, neck muscles, Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.
Group 2a – Both
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Group 2b – Either or both
Headache, Increased malaise, Fatigue
Group 3 – Induced and/or Paradoxical Folate deficiency or insufficiency
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
Group 4
Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
Group 3 symptoms, induced paradoxical folate deficiency or insufficiency are corrected quickly with titrated doses of Metafolin, methylb12 and adenosylb12. If glutathione (precursors) are the cause then larger doses of Metafolin, 7.5-15mg,or maybe more are needed. Different tissues are affected at different levels of methylfolate, it comes or goes in stages. Very strong dose proportionate characteristics are present. Serum folate levels may be high or even very high despite Metafolin responsive deficiency/insufficiency symptoms.
Group 1 symptoms respond readily to potassium. The symptoms and response to potassium may occur at a serum level of 4.3 or less.
IF taking Glutathione, NAC, Cerefolin-NAC, whey, all glutathione or glutathione precursors
AND often sudden onset of several group 3 symptoms (“Detox”) maybe in a sequence, ie pain and inflammation the first day, cheilitis occurs on day 2-3 and IBS on day 5-6, plus any group 2 symptoms. Symptoms increase for weeks or months and can vary from mild to extreme.
THEN Induced Paradoxical Folate Deficiency onset. B12 deficiencies follow in a week for methylb12 deficiency symptoms and several weeks for adenosylb12 deficiency symptoms. None of the other supplements can overcome the effects of glutathione or NAC.
ELSE – all other conditions
IF injecting b12
AND itchy bumps and acne type lesions appear mostly on scalp and face but not exclusive
THEN B12 was hydroxycbl OR photolytically deteriorated methylcbl OR cyanocbl, Lesions can be reversed in days with methylcbl injections not exposed to light at all.
IF starting or adding methylb12, adenposylb12 or hydroxycbl, AND OR Metafolin (perhaps 80%)
AND the approximately 3rd day or later onset of symptoms (“Detox”) from Group 1 and/or group2
THEN this can be the onset of Hypokalemia triggered by sudden widespread healing onset. This usually occurs as soon as methylation therapy starts widespread healing process by allowing DNA replications with methylb12 and methylfolate.
IF adding adenosylcobalamin AND OR L-carnitine fumarate AND OR SAM-e to program (perhaps 50%)
AND the approximately 3rd day or later onset of symptoms (“Detox”) from Group 1 and/or group2
THEN this can be the onset of Hypokalemia triggered by sudden healing and /or muscle growth. This usually occurs when the person has experienced muscle shrinkage perhaps from decades of inactivity, as soon as these supplements step up mitochondria functioning.
IF adding or increasing any of Vitamins D, A, E, or C, magnesium, zinc (perhaps 10%)
AND on the approximately 3rd day or later onset of symptoms (“Detox”) from Group 1 and/or group2
THEN this can be the onset of Paradoxical Folate Deficiency (or Insufficiency). Folinic acid is the primary form found in vegetable source. In some unknown percentage of people who appear unable to convert folinic acid adequately to methylfolate the accumulating unconverted folinic acid can actually block the methylfolate.
IF starting or increasing folic acid
AND usually takes a number of days to accumulate to a level leading to onset of symptoms (“Detox”) from Group 3 and/or group2
THEN this can be the onset of Paradoxical Folate Deficiency (or Insufficiency). Folic acid is the most oxidized form of folate that anybody can use. In some unknown percentage of people who appear unable to convert folic acid adequately to methylfolate the accumulating unconverted folic acid can actually block the methylfolate.
IF starting or increasing folinic acid
AND usually takes a number of days to accumulate to a level leading to onset of symptoms (“Detox”) from Group 3 and/or group2
THEN this can be the onset of Paradoxical Folate Deficiency (or Insufficiency). Folinic acid is a less oxidized form of folate than folic acid.. In some unknown percentage of people who appear unable to convert folinic acid adequately to methylfolate the accumulating unconverted folinic acid can actually block the methylfolate.
IF an increase in dietary vegetable folate, “green drinks”, a garden feast
AND usually takes a number of days to accumulate to a level leading to onset of symptoms (“Detox”) from Group 3 and/or group2
THEN this can be the onset of Paradoxical Folate Deficiency (or Insufficiency). Folinic acid is the primary form found in vegetable source. In some unknown percentage of people who appear unable to convert folinic acid adequately to methylfolate the accumulating unconverted folinic acid can actually block the methylfolate.
IF starting or increasing folic acid AND OR starting or increasing folinic acid AND OR an increase in dietary vegetable folate
AND the approximately 3rd day or later onset of symptoms (“Detox”) from Group 1 and/or group2
AND usually takes a number of days to accumulate to a level leading to onset of symptoms (“Detox”) from Group 3 and/or group2
THEN this can be the onset of Paradoxical Folate Insufficiency AND this can be the onset of Hypokalemia triggered by sudden healing
IF starting or Methylfolate – Metafolin starting low and titrating
AND the approximately 3rd day or later onset of symptoms (“Detox”) from Group 1 and/or group2
AND OR usually takes a number of days to accumulate to a level leading to onset of symptoms (“Detox”) from Group 3 and/or group2
THEN this can be the onset of Paradoxical Folate Insufficiency, a “donut hole” deficiency. The effects of folate deficiency/insufficiency comes in layers. Several tissue groups can be healing at the same time as other tissue groups are deteriorating. IBS and angular cheilitis can be worsening at the same time as muscles are healing or growing. There is a dose of Metafolin that can start more tissue formation than the same dose can sustain causing a Paradoxical Folate Insufficiency at the same time. In some people at least as they increase Metafolin the need for potassium increases approximately proportionately. The donut hole can be closed with total daily doses of Metafolin of about 15mg for many people.
TWENTY FIRST CENTURY MYSTERY SYNDROME
In the early 1940s a Nobel prize was awarded for folic acid. As we know now, folic acid is totally ineffective for 20% of the population due to genetic polymorphisms. Another 30% have very limited effectiveness from folic acid with only partial conversion to methylfolate. Even the 50% with the best conversion has limited amounts converted, an amount insufficient to maintain health for many people. Then, even worse, for some percentage of these people the inactive unconverted folic acid actually blocks methylfolate taken as a supplement from being effective. Again, illumination of this process is aided by the ready availability of Metafolin. So what do you call these people with a folate deficiency because they can’t utilize folic acid or in some cases, folinic acid, the vegetable folate form? Because it is genetic these folks are ill for a lifetime with this paradoxical folate deficiency. At some point they can and do get ill. You say “Paradoxical folate deficiency? What’s that, you never heard of it? Excuse me, you might know it better under the more familiar names of FMS or CFS or maybe MS. Since “folate deficiency” is a known item that has been dealt with by folic acid how can that be? Once again it is, mystery disease time, because the lack of 100% effectiveness of folic acid had been forgotten.
Since the middle of the last century there has been an explosion of neurological and other disorders including fibromyalgia syndrome, Chronic fatigue syndrome, M.E., Parkinson’s disease, MS, ALS, Alzheimer’s, Autism, SupraNuclearPalsy. The mystery syndrome includes many other potentially named diseases and syndromes. What ties these together? Results of research studies. The specific studies were those that compared cerebral spinal fluid cobalamin levels to blood serum cobalamin levels. Some of them also measured and compared CSF MMA and Hcy to serum HCy and uMMA. In 1948 the Nobel Prize was awarded for a lab mistake, the mis-identification of cyanocobalamin as “B12” instead of the real B12s, methylcobalamin and adenosylcobalamin.
For all of the named conditions low CSF cobalamin level was found to be independent of blood serum cobalamin level. Further, for those measuring it, CSF HCY was independent of blood serum HCY and CSF MMA was independent from urine MMA.
Research on cyanocobalamin and hydroxycobalamin since the 1950s have given the impression that “b12 deficiency” is one thing. Since the late 90s the ready availability of methylcobalamin and adenosylcobalamin have allowed anybody interested to demonstrate and experience the differences between cyanocbl/hydroxycbl and the two active b12s, methylb12 and adenosylb12. As the official “b12” is cyanocbl the deficiencies are defined in terms of cyanocbl. On an internationally based list of b12 deficiency symptoms expanded for maximum detail added to by what methylcobalamin and adenosylcobalamin directly affect in humans, the problem becomes readily apparent; cyanocbl has no effectiveness in 1/3 of subjects in just about every study ever done considering only symptoms known to be affected by cyanocbl. Further 2/3 of the total symptoms affected by the two active cobalamins are completely unaffected by cyanocbl and hydroxycbl. Then somehow, physicians and researchers have forgotten about all these symptoms unaffected by cyanocbl/hydroxcbl. They have become “mystery syndromes”.
A careful observation of the effectiveness of adenosylcobalamin and methylcobalamin makes it very clear, in combination with the CSF cobalamin level studies that there are 4 distinct b12 deficiency syndromes; CNS-adenosylcobalamin, CNS-methylcobalamin, body-adenosylcobalamin and body-methylcobalamin. In addition there are 4 forms of methylfolate deficiency; folic acid blocked methylfolate paradoxical folate deficiency, folinic acid blocked methylfolate paradoxical folate deficiency (vegetable food source folate included), Methylfolate triggered symptomatic methylfolate partial insufficiency and glutathione/NAC triggered paradoxical folate deficiency.
These syndromes, FMS and CFS, respond promptly to methylcobalamin, adenosylcobalamin and methylfolate. For those with anxiety the methylcobalamin and adenosylcobalamin must be titrated very slowly starting at perhaps 50mcg of sublingual b12 (literally a crumb) of each form on alternating days working up very slowly, below “alarm” level, until full equilibrium is established when no further increase in dose makes a difference. For those without anxiety a 1000mcg sublingual dose is an effective starting point. With the two 5 star effective brands, Jarrow Formulas and Enzymatic Therapy methylcobalamin, maintaining the tablet under the upper lip for 45-120 minutes causes absorption, tested in comparison with injections, in the 15-25% range typically (10-33% extremes). Source Naturals Dibencozide (adenosylcobalamin) 10mg has no folic acid in it and is acceptable in both absorption and effectiveness. About 80% of people starting these active b12 forms with methylfolate will demonstrate the start of healing with epithelial tissue healing and dropping/low potassium symptoms within about 3-4 days. Additional potassium may be needed from 400mg to 2000mg or more daily. I take 1200mg of potassium from potassium chloride as 600mg with each meal and 300-400mg as potassium gluconate tablets twice a day. If a person wakes to middle of the night spasms 500mg of potassium from potassium gluconate with a large glass of water will relieve them within 30 minutes generally. Lasix and other diuretics need to be taken into consideration. Paradoxical folate deficiency can alternate with low potassium. Edema is sometimes related to paradoxical folate deficiency and as the water is excreted the potassium may drop rapidly.
glutathione and NAC triggered paradoxical folate deficiency
Glutathione and NAC, both cause the same “detox” reaction with the group 3 symptoms. Hypothetically the glutathione combines with the methylcobalamin and adenosylcobalamin forming glutathionylcobalamin which then shows up in the urine in profusion in the next few hours. Without the active b12s in the cells the methylfolate is flushed from the cells (“methyl trap”) causing rapid onset of folate deficiency symptoms regardless of serum folate levels or dose of Metafolin. People who claim relief of symptoms from glutathione are reporting an effect. Those people who have anxiety as a symptom respond to both neurological methylcobalamin and methylfolate response and to ATP startup response with adenosylcobalamin as “unbearable” and greatly increasing their anxiety. The glutathione almost immediately relieves and stops methylcobalamin and methylfolate effects and rapidly decreasing adenosylcobalamin ATP effect. Those who have had pronounced healing from methylcobalamin, adenosylcobalamin and methylfolate undergo immediate progressive return of deficiency symptoms, and large body wide increases in pain and inflammation . In six weeks continued usage of the glutathione can cause neurological damage with a noticeable increase in Sub-acute Combined Degeneration damage. Glutathione/NAC “relieves” neurological pain and discomfort by damaging the nerves to the point of numbness by combining with and removing essentially all active circulating mb12 and adb12 from the body starting in minutes..
Strategy for overcoming paradoxical folate deficiency/insufficiency from vegetable food source folate
A number of people have found the following method effective, with variations, at overcoming life-long paradoxical folate deficiency/insufficiency from vegetable food source folate.
Wakeup – 2400mcg Metafolin on empty stomach
First meal – 4000mcg Metafolin with meal
Mid-afternoon – 2400mcg Metafolin on empty stomach
Dinner – 4000mcg Metafolin with meal
Bedtime – 2400mcg Metafolin on empty stomach
And NO FOLIC ACID, NO FOLINIC ACID and modest high folate vegetable consumption. Vegetarians will have a problem. So the b-complex must be without any form of folate except methylfolate or Metafolin. Further, no glutathione, no NAC, no whey
Freddd says
Benjamin, A few summations also at this point after 10 years of debugging the use of active b12s and folate.
person 1 – no csf, no fms, no b12 deficiency, no specific responses to nutrients, no healing startup, no b12 deficiency, CFS, FMS symtoms
less than 2mg daily average sublingual nominal dose of both active b12s, 99mg potassium, 800mcg of metafolin
person 2 – subset of b12 deficiency, fms, cfs deficiencies. strong “startup responses” with healing startup occurring at 50mcg total absorbed mb12/adb12 and ATP startup with l-carnitine fumarate (100-200mcg). 2700mg potassium, 1600mg metafolin
person 2 later in titration – 2000mcg sublingual mb12 daily, 2500mcg sublingual adenosylb12 daily, 2700mg potassium, 1600mcg metafolin
person 3 CFS, FMS, ME, healing startup, ATP startup- more severe symptoms simlar to person 2, 250mcg daily mixed absorbed mb12/adb12, 2400mg potassium, 3200mg metafolin
person 4 CFS, FMS, healing startup,ATP startup, neurological healing startup, subacute combined degneration, paradoxical folate deficiency- folinc/veggie – 40mg or so absorbed mixed adb12/mb12 – 2200 mg potassium, 15mg of Metafolin
These 4 people are examples of what kind of ratios are seen. It is clear that healing startup occurs around 50mcg of active b12s and does not require any massive dosing. That applies only to CNS neurological healing.
Another view into the same data set for all persons experiencing healing and ATP startup
50mcg mixed active b12s or more, 1600-3000mg of potassium, 1600-3200mcg of Metafolin no paradoxical folate deficiency
50mcg mixed acive b12s or more, 1600-3000mg of potassium, 6000-8000mcg of Metafolin, paradoxical folate deficiency folic acid caused paradoxical folate deficiency
50mcg mixed acive b12s or more, 1600-3000mg of potassium, 12mg + of Metafolin, paradoxical folate deficiency folic/folinic/veggie caused paradoxical folate deficiency
Less Metafolin than people need produces healing AND folate insufficiency symptoms at the same time and may cause low potassium as at same time as low folate.
How much metafolin a person needs appears to tie directly to the genetic polymorphisms relating to folate usage in the body.
“I do know that potassium may interfere with b12 absorption; however, where is the research citiing that potassium levels drop while taking methylcobalamin – or is it clinically seen?”
Potassium in no way affects absorbtion of sublingual or injected b12. The research has never been done as far as I know because of the very biased concentration on cyanocbl and hydroxcbl, the twinkie forms that don’t spoil and don’t produce any troublsom healing generally.. Hypokalemia is “rare” with only cyanob12 or for that matter only any b12. However, you add Metafolin and methylation and generalized healing turn on dropping potassium in 3 days. That happens with hydroxycbl as well. This is a combination effect, needing both tightly interacting cofactors. I was amazed when I started posting at a differnt forum. Half the people were sufferring from indefinite “detox” for years whereas our experience at a different forum was no detox except those coming in from other places. Clearly they were doing something that casued the artifacts of “detox”. There were differences. One of them is that Metafolin had recently become avaialble. They were using mixed folates and we were suggesting pure Metqafolin they were convinced they had to keep Metafolin low to control “detox”, really low potassium and olow methyfolate, sufferring for years in many cases. It was further complicated by so many people inducing severe folate and b12 deficiencies with NAC and glutathione. At the other forum people were recovering from CFS/FMS to the point of being ready to rehabilitate in a year. Working a lot of people through these different problems and combinations lead to the decision tree in the above post. Italso di an N=10 trial of glutathione or precursors with 100% “detox” response” that corrected in days with large doses of Metafolin and mb12 abnd adb12.
ALL of this entire decision tree is because of how people actually respond, none of it theory. It has very high predictability. It sure does blow out a whole lot of favorite theories of a lot of different people.are working based on. It shows up the “detox” hypothesis to be totally bogus 90+ percent of the time in these specific circumstances. It is NOT going to be popular with certain folks. Only people not dedicated to certain ideas will be able to use this. Others will reject it because it doesn’t fit their theories.
The next decision tree I’m working on will select those who have a very predictable set of symptoms and a specific hyper response to certain supplements under certain conditions, and identitifes them as probably having the limbic system as the area of damage from the deficiencies in the limbic system neuronal mitochondria, based on the neuropsychological effects in the limbic system.
When a dose of 500mg of potassium gluconate and 12-16 ounces of water generally alleviates the much of the set of potassium simptoms starting in about 30 minutes or less, and does so repeatedly and predictably until the daily totaql is taken in multiple doses across the day and evening. To avoid screaming muscle spasms in my legs in the middle of the night I take a bertime dose of 300mg of potassium gluconate. I can’t go from dinner to brunch (2 meals a day) without a bedtimne and wakeup dose, if can fall too fast. I do that to keep the total amount to a minuimum rather than take larger doses at my meals to allow for the rapid falloff. About every two weeks I have an attack of low potassium anyway, and take a diuretic which makes me especially vulnerable. In any case as it is repeatable and worked first time, every time, it is predictable when it occurs. People don’t need to be taking it to be effective. They can test it’s effectiveness immediately on symptoms. The potassium if an adequate amount, works quickly. If it is an almost adequate, perhaps 2 hours, if inadequate it might help very little until the next dose. Metafolin works almost as quickly against some of the symptoms and within days for most of them. However, in the case of glutathione indsuce deficiencies or the worst of the paradoxical folate deficiency (folicnic acid and veggie folate) might need as much as the 15 mg dose as in the higher dose of Deplin, to reverse the deficiency all the way. At that time expect a surge of need for potassium.
This whole thing was tied up into a complicated double deficiency in a feedback loop and just wasn’t recognized becasue the right questions were not asked in research or clinical programs. I can demonstrate this quite reliably. If I were charging you a healthy chunk of change for this advice on how decrease the costs in your HMO and increase patient satisfaction in this segment, I would make my compensation dependent upon agreed performance results. In otherwords, satisfaction guaranteed or you pay proportionately to satisfaction level.
“It is not a small thing for people to be taking 1+ gram of potassium and can be very dangerous. Potassium levels are tightly controlled and if too elevated, may cause serious cardiovascular problems.”
And ignored hypokalemia can lead to death. Hypokalemia, in the presence of hypokalemia symptoms because of a specifc set of supplements taken a few days before and responds favorably to potassium is, amazing as it seems, hypokalemia. The only people that usually need to be concerned about potassium, especially within the overall limit of the paleo diet for instance, about 8000mg potassium daily, are those with kidney damage generally. Hypokalemia is some thousands of times more common than hyperkalemia. With a known cause preceding the development of predicted symptoms that are relieved in a predicted way what other choice is there? Let’s get real.
ARVIND says
HI DIS IS ARVIND, FROM INDIA, I AM A MALE, AND STARTED MASTURBATED RIGHT FROM 18 DAILY TILL 25, AND AFTER 25 I STARTED FEELING, THAT I AM IN SEVERE VITAMIN AND MINERAL , ESPECIALLY RUNNING DEFICIENCY OF METHYLCOBALAMIN,(VITAMIN B12), AFTER A HUGE MARKET FINDING, IN INDIA , I FOUND A VERY EFFECTIVE METHYLCOBALAMIN TABLET, IN MEDPLUS STORE, A VERY FAMOUS STORE IN INDIA, ESPECIALLY IN SOUTH INDIA,
THE TABLET NAME IS NEURORITE (METHYLCOBALAMIN 1500MCG), CALRITE (CALCIUM + VITAMIN D) , ALSO OTHER VITAMIN TABLET WHICH COST VERY LOW, BUT QUALITY IS HIGH.
I TAKE 6000MCG OF METHYLCOBALAMIN, CALRITE DAILY NIGHT BEFORE SLEEP, ALSO POTASSIUM TABLET OF 100MCG MORNING, NOW I AM COMPLETELY WELL, AND STILL CONTINUING ONY INTAKE OF METHYLCOBALAMIN , B.COZ IT IS KEEPING MY BODY WELL, AND MOOD WELL.
ANY HELP ME NEED MAIL TO ME [email protected]
Finndian says
Arvid, it sounds like you think that masturbating has caused you to ejaculate out your vitamins and minerals. If that were the case there would be teenage boys littering the streets here in America looking sick and exhausted. You might need some liniment for a sore arm but other than that I think you’re okay with masturbating.
Rather, I believe your religion in India does not allow you to eat certain animal meat. Are you a vegetarian?
I was in Bangalore India recently and I noticed quite a few people with very dark rings around their eyes and even the children had very rough hands. I was curious so I did little research and the dark rings could be vitamin B deficiencies and the rough skin could be essential fatty acid deficiency due to a vegetarian diet.
Julee Ellison says
Okay, I’ll admit that cracked me up!!!
Freddd says
Findian, Most of the research on sexual and reproductive matters come out of India. For instance, a typical ejaculation containes as much 200x as much Transcobalamin II as blood per ml. 5ml of semen can contain theoretically as much b12 as 1000ml of blood, perhaps 1-2 mcg.
The traditional “tantric meal” out of vegetarian cultures contains beef, fish, whole grains and other foods containing adenosylb12, methylb12, methylfolate, omega3 oils, l-carnitine, b-complex, and vitamin a, c, e and minerals. Sounds like a made to order neurological and mitochondria nutrient meal to enahnce extended sexual intercourse and spitritual experience. The lack may have been a mystery to the general population but not to the tantric mystics.
Masturbation can’t do that since the percentage of TCII occupied by b12 which becomes HTCII (holotranscobalamin II) falls off rapidly with decreasing serum b12 level and can’t take a person into deficiency. So it is indeed typically a lack of b12 input.
michelle says
hi,im in the u.k,i just got my blood tests back after suffering from extreme fatigue,tingling and numbness-mainly in the lower arms,wrists and hands.i don’t get a good nights sleep any more,and when i fall asleep my nerves in my hands tighten and clench,this can happen happen when im awake too,just sub-conscious for a while before im conscious that my hands are clenching.anyway my blood tests say at 220 my b12 level is at the low end of normal,but is still normal.my folate is also normal,but at the high end-at 24,not sure if that’s right though as the woman seemed to think my folate was my iron?! i have always been an active woman and have felt weak and not right for months now,just need some advice,should i go back to my doctors? i also had my thyroid tested as i was also cold alot of the time,but that came back normal too.could this symptoms occur due to borderline low b12?,many thanks for a reply
daz says
Hi michelle,
just thought i add my 2cents on the thyroid subject.
did you get to see you thyroid results? the normal/basic thyroid lab test is TSH. & the normal lab range is deemed quite wide by a lot of experts in the field.
My last two tests were 3.3 & 2.5 which are will within the normal lab range (which was 0.5 – 4.5). But i had a lot of hypothyroid symptoms, including low body temp (feeling cold), this is generally referred to as Euthyroid Sick Syndrome,
http://en.wikipedia.org/wiki/Euthyroid_sick_syndrome
I have read that a good TSH number is below 1.0 and a body temp generally above 98F.
michelle says
hi daz,
yes my thyroid tsh level is 2.03
my free t4 level is 11.2
i went to the drs and got my results printed off and made another appointment for next week,found my b12 level was 202,not 220 as i originally thought,forgot to add also that i had been taking b12 supplement for at least five months (Cyanocobalamin kind),my doctor asked me to stop these for two weeks before my blood test.the normal range on the paper states 180.0-914.0.and my folate is 24ng which is above range (4.0-20.0 range on paper),but ‘no further action’ is stated.
i know my symptoms could be b12 or thyroid connected,which is more likely? or do i need further tests-i know my iron must of been tested as she asked if i had ever been anaemic,which i have,but cannot see iron or ferritin levels on results
Finndian says
Need to see what your test ranges are but if my TSH was above 1 on my range of (0.5 – 4.5) I’d be totally hypothyroid. I’d be in bed if my TSH were above 2… but then I have Hashimoto’s syndrome hypothyroidism.
Free T3 with ranges is what you need to see. I need to be high range T3 and T4 to feel best. I don’t try to adjust TSH unless its above 1.
michelle says
hi finndian,
after it says 2.03mu/L for tsh it has(0.3-5.6),is that the range? my 2.03 is bang in the middle of that isnt it.see also you have the ‘clenching’ going on too,is this just from your thyroid,or do you have low/borderline b12 deficiency too? and the pinching skin,have done this-not sure if its what i see
michelle says
also free t4 level says 11.2 pmol/L (6.3-14.0)-range? if you wanted to know this
Finndian says
The gathering of skin on the upper arm makes the ‘alligator skin’ effect more pronounced. Its a common complaint with hypothyroids.
http://forums.realthyroidhelp.com/viewtopic.php?f=2&t=17077&start=0
Free T3 is more important than all the other tests. T3 is the active fuel for your metabolism. Before I switched to Armour thyroid hormone I wasn’t converting the T4 to T3 effectively and exertion would burn off my already low T3 leaving me exhausted, with yellow alligator skin, constipation and insomnia.
Even feeling terrible I would lift weights, run and do aerobic activity then sit in the sauna for 45 minutes and sweat out my water soluble vitamins like B12 thinking that all that sweating was healthy. Add to this the fact that I don’t eat red meat AND I have come to find that I have the genetic variations of the MTHFR and MTH that make it difficult to absorb B12 and Folate to some degree. I was killing myself trying to be healthy.
After many unexplained nerve problems, vocal cord paralysis and extremities tingling I began injecting methylcobalamin B12 against my doctors wishes. Some studies mention Bell’s palsy responding will to B12 injections so instead of risking losing my voice forever I began the weekly injections. My vocal cord recovered very quickly from the paralysis as a result. ALL of my nerve conditions have slowly dissipated although one nerve in upper back seems permanently weak now and prone to fatigue. I KNOW it was my B12 levels now and I’m proud to have taken my health into my own hands. Doctors are not trained in nutrition and wouldn’t know a deficiency if it bit them in the ass.
I had not heard of the potassium connection until this site and now I am taking 1200mg of potassium chloride I bought over the counter in Paris. I could not figure out why my hands would continue to tingle even after injecting B12. Apparently my potassium was plummeting with the injection and that is a symptom of low potassium as well… I’m haven’t felt the sensation since starting potassium.
Freddd says
Finndian, I would suggest that yoiu check out Metafolin. That will take care of your folate problems. TO overcome the paradoxical folate deficiency you may have you would need to titrate metafolin, getting all possible folic acid and folini acid, and perhaps even limit high folate veggies as I have to. I find that I need 15mg of Metyafolin daily to overcome the paradooxical folate deficiency. people without this generally find 1600-3200 mcg ofg Metafolin to be sufficient. With this therre is one form that usually eneds up arounf 6000-8000mcg Metafolin and those with the other form of Paradoxical folate deficiency – folinic acdid/veggie folate may need 12-30mg of Metafolin.
When you start the metyaqfolin, ypur potassium needs may incxrease. Usually peole end up adjusting it to 2000-3000mg of potassium daily to overcome the low potassium symptoms. Good luck.
Finndian says
When I had undiagnosed thyroid disease I would wake up with my hands numb or tingling because I would clench them under my chin (for the first time in my life) while I was sleeping. I was within high normal range but had all the symptoms…especially slightly low body temp.
Gathering a circle of skin of your upper arm… on the inside of your bicep, using your thumb and fore finger. If you see a diamond pattern like snake skin in the gathered flesh you most certainly are hypothyroid and need the hormone.
shirley says
I am convinced that the B12 level i s set to low in this country.I felt so ill with fatigue racing heart, am cold all the time, foggy thinking and soles of feet feeling strange.
i had to give up my job, doctors thought it was stress, however 9 months later they found my B12 was 140, but they said I just needded to add some fish back into my vegetraian diet and use fortified breakfast ceral. After 3 months B12 was up to 191 then after another 3 months it was 240. However ,another 3 monthson , I am feeling odd again ,depressed and feet feeling “fizzy”(sorry dont know how else to describe it!).The doctors really dont take this seriuosly and I dont want to go back as I get the impression that they think Im a hypocondraic or menopausal. Not sure where to go from here other than perhaps try and change my doctors and hope for more understanding.Strangely the MCV level was always on the low side ,but doctors said she would normally expect it to be high with B12 deficiency- I just get more and more confused. Godd luck I hope you manage to get it sorted. I f you manage to find some answers I would be interested to know.:)
Freddd says
Shirely, The tests are terrible. Even the high end is too low functionally to be symptoms free of active b12 deficiency symptoms. Also, low iron will cause small blood cells and be misleading when looking for a high MCV with b12/folate deficiencies.
Freddd says
Michelle, With low b12 folate can be high becasue the reactions requing dfolate also requires b12 and that can be stopping everything. As symptoms are generally response to mb12 and adb12 ecven with serum levels well over 1500pg/ml, there not taking b12 becasue it is abpove a statisticval “high” that means you have more than the top 2.5%, but says nothing about wheter it is active or effective. The ONLY definitive test is a trial of mb12 with adb12 and Metafolin and other cofactors. If somebody has a bunch of the 300 symprpoms of b12/folatge deficiencies then they respnsd to mb12/adb12 etc of the right brands. Low carnotine can also look exactly like low adb12 because both/each can shut down the mitochondria. In some forms of paradoxical folagte deficiency there can be high serum folate and it is all useless inacvtive forms of folate which accumulates and blocks the real methylfolate.
Freddd says
Hi Moongirl,
http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/ has all the basics with updates towards the end of the thread. I’m working on the version for hypersensitives. A good balanced inclusive vitamin and supplements program is needed. A, B-complex, C, D, E, minerals, omega3 oils, lecithin are basicsw. Portassium is essential to prevent problem and is common immediuate induced deficiency with Metafolin number 2 in that.
Rose says
Is there a connection between pale stools and low B12?
Rose says
I can now answer this question myself and perhaps help somebody else out at the same time. I’ve been supplementing with sublingual B12 for months now, so the pale stool was something else to ponder. Recently, I’ve had a sore tongue and have been dizzy. I didn’t see how these symptoms could be related to my B12 status, but have now discovered from Dr. Google that they are all symptoms of low iron levels.
Rose says
Should have said that the symptoms of low B12 and low iron can be very similar. Having both at the same time is a real drag!
Moongirl says
Can anyone tell me how long it might take to go from 342 to 239? Is it possible to have your B12 drop dramatically over 2 months?
I started weekly shots about 6 weeks ago and then 3 weeks later was switched to bi-weekly. I get the shots on Friday. By the Monday/Tuesday of the week I am scheduled to get a shot, I am so cloudy, tired, can’t think. The doctor (who practices integrative medicine and is 100% on board with my treatment) thinks it is odd that I “respond so dramatically” to the shots. Any ideas?
Freddd says
Hi Moongirl,
Yes it is for all sorts of reasons. What it comes down to is you need to increase your input. The 5 star sublinguals will do you FAR better than weekly or less injections. Also some other items will help heal you thoroughly so you won’t suffer damage from this. If you were responding very strongly to 5 star methylb12, that is entirelu normal and expected. That anyone responds strongly to cyanocbl is a 1 in a million experience. It doesn’t last That is the problem with cyanocbl along with that it works very poorly compared to mb1w2 and adb12 of suitable quality.
Moongirl says
Freddd,
I think it is great that you are doing all this work and spreading the word. I have to admit though that I get a little confused when I am reading your replies to others regarding all the other inefficiencies that can arise from treating the B12. I see you told someone that you are currently writing up instructions. I’d love to know when that is ready. I found the sublingual methyl-b you recommend at my local natural food store. I would like to start taking it after I get my levels re-drawn and after the doc tests me for intrinsic factor antibodies (this week.) I am also having my D retested as that was extremely low at 11. I am ready to beat this thing and get my life back.
Moon
goofy_mom says
Hi Freddd,
I am 38 and would describe myself as a healthy person until few months ago when my neck started bothering me. Went to neurologist who sent me to physical therapy which didnt help. In few weeks, I started feeling tingling in right arm and leg and face. They did MRI to rule out MS and fortunately it was negative. I was a vegetarian for years and had low B12 11 years ago when I did monthly b12 shots for 6 months. I just got b12 checked out and it was 362 and doc says its “in range” but all my symptoms are there which makes me feel its too low. I started liquid 1000mcg b12 of generic brand today but came across this and very hopeful that trying your suggested will help. I need to start with the following based on your article. I already take potassium supplement and slow releasing iron + multi-vitamin. Will any of these interfere with the basic remedy described below:
Jarrow Formulas, Methyl B-12, 5000 mcg
Enzymatic Therapy, B12 Infusion
Solgar, Folate Metafolin Folic Acid, 800 mcg
This forum has given me a ray of hope. Please answer so I can order it from iherb.com
Goofy_mom
Freddd says
Hi Goofy_mom,
It’s not quite that simple. Please be careful. Almost everybody who starts the mb12/adb12/methylfolate has a strong healing startup requiring normally in the range 2000mg-3000mg a day, in several doses. The potassium needs to be on hand at night as it can be quite impossible to stop screaming and get up off the floor if you have the muscle spasms as I do. This can happen for people with a measure level as high as 4.3, about mid-range on one of the usual ranges used. Also, the Metafolin needs to be titrated to need by paying attention to the folate insufficiency symptoms. All the usual vitamins and minerals are needed if healing isn’t going to grind to a halt over and over. Adneosylb12 (Source Naturals 10mg )should be titrated along with the mb12. Only the 5 star mb12 brands should be used.
You need to do something other than that time release iron. Is it prescription? What problems do you have causing you to take that? It can block b12 absorbtion and vitamin E absorbtion for 8-12 hours. Non-time release iron should be taken once a day and vitamin e at least 8-12 hours later. B12 will be sublingual so no problem. Vit B12 deficiency can cause enlarged red cells and hence anemia. Vit E deficiency can cause anemia through red cell fragility. Good luck. If you feel sick a few days after starting that is usually potassium and/or folate deficiencies. I generally advise ti titrate both the Jarrow Enzamatic therapy 1mg these days and start with 1/8 of that and 1/8 of the dibencozide for a few days and as long as the startup and brightening, which is normal, and titrate by an additional 1/8 of each. When healing startup occurs, hold level on that and get the potassium and metafolin blanaced out before continuing. I’m getting this whole process written up for this new titration method over the next few days.
goofy_mom says
Freddd,
My iron was low (11) in January and my PCP asked me to take supplement. As of last week it is up to 14 which is in range but I didnt want to stop taking it.
Recently i am feeling very tired and not able to sleep more than 4-5 hrs at night due to tingling and numbness in right hand and leg. I am starting to feel pain in lower back and stomach too which doesnt make sense to me. I strongly believe my b12 is low (362) and it may be causing bunch of neuro symptoms.
I will switch time released to non-time released iron and will add vit-E. Do you recommend particular potassium? I will start out with 1/8 Jarrow Enzamatic 1mg and 1/8 of the dibencozide. What about Folate Metafolin Folic Acid? I am not sure if I have folate deficiency. How can I find out?
Thank you, Freddd
Freddd says
Hi Goofy_mom,
I find the potassium gluconate to be comfortable on my stomach but not real quick compared to potassium chloride. Metaolin is almost always needed for the healing to switch on and when it does, need for potassium increase in 3 days typically. See the decision tree farther down the page I just posted. That will describe the folate insufficiency and deficiency symptoms. Often the potassium and folagte symptoms appear together and confuse everybody.
Jasmine says
So does this mean people can use B12 as an argument against veganism and vegetarianism? 😉
Freddd says
Jasmine, Only if you are so inclined. If a vegetarian supplements with mb12, adb12, Metafolin, L-carnitine fumarate and maybe a few other amino acids and such then there is no harm. I was damaged by being a vegetarian for 20+ years by only having cyanocbl to supplement and that doesn’t srop b12 deficiency from developing. I also have paradoxical folate deficiency and the more vegetable folate I eat the worse my folate deficiency gets. I have to have methylfolate from meat without folininc acid (much of veggie folate) to live and be healthy. Being a vegetarian that did eat eggs, milk, cheese and occasional fish still almost killed me. Wthout those small soucres of b12 and folate helped keep me alive, barely.
Jasmine says
hehehe I was only trying to be a little facetious. 😉
I recently tried veganism just to force myself to learn about other types of foods, but when I realised B12 is only present in animal products I decided to end my vegan phase. I consider myself pretty intelligent, yet I was completely unaware of the fact that B12 is only found in animal products. It concerns me that the majority of vegans and vegetarians may not know about B12 deficiency.
Everyone who argues against veganism and vegetarianism uses examples like iron, protein, calcium etc to convince people that we ‘need’ meat and milk to be healthy, but those arguments don’t work on intelligent vegans who know their nutrients and vitamins and minerals and the plant sources that supply them. But how often do people mention B12 deficiency?! I hadn’t heard of it until I came here.
Jinny says
Hi Jasmine,
As a vegan I am well aware of B12 deficiency and so are many others. Are you aware that just as many and maybe even more people who eat animal products are also deficient? I have been following this post for awhile and it seems more people who eat animal products post on here than vegans. So perhaps, mentioning B12 deficiencies to people who eat animal products should be a concern as well.
Jasmine says
Hi Jinny,
Oh yea, for sure, non vegans and non vegetarians should also be made aware of B12 deficiency, without question. Non vegans and non vegetarians are just as important as vegans amd vegetarians and we should all get enough B12 🙂
I was only pointing out my concern because meat eaters and dairy consumers are less likely to be B12 deficient. Whereas vegans are pretty much guaranteed to be deficient unless they, like yourself, know about B12. I just consider it a bit alarming that I hadn’t heard of it until coming to this site. It might be my age, the country I’m from, or the schools I went to, but I had never heard of this before.
A colleague of mine is vegetarian for Religious reasons and was told by her doctor that she should have B12 injections, but my colleague doesn’t want to because she doesn’t trust that the injections are animal free. She believes the injections must be derived from animal sources. (I find it interesting that she won’t eat animal flesh of eggs or take B12 injections but consumes cows milk without any remorse for the cows who are mistreated to produce said milk – but anyway)
I tried to look it up online without much luck. Does anyone here know exactly what B12 injections are made from?
Freddd says
Mona, You have been given very poor information and very poor therapy. To reverse I have to do a whole lot more or it would have been considered “permanent damage”. Cyanocobalamin would have made it permanent and hopeless. There can be 100-1000x difference in effectiveness of different brands of mb12
Come on over to this other board and join and message me and we can discuss your situation personally and in detail. I inject 10mg of methylb12 3 times a day plus a load of other things to recover most function and keep it from advancing. I have a questionnaire for you to fill out if you are interested. You can do a lot better that what you are doing regardless of what they tell you. What country do you live in?
http://forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/
Good luck.
Mona says
So I see here a mention from Freddd of Subacute Combined Degeneration of the Spinal Cord. I was diagnosed in 2010 with SCD after a B12 deficiency diagnosis, with a level of 85, in 2009. My serum B12 has dropped from 464 in December to 375 in March. My next check will be in June. I get 1000 mcg cyanocobalamin shots every 3 weeks and take sublingual Methylcobalamin daily. Why are my numbers not higher?
I have been told my level is within the “normal range” and I should not be experiencing any symptoms so there has been doubt of the SCD diagnosis.
I have read up on SCD online but maybe someone has some that I haven’t read.
Any info is greatly appreciated!
Elizabeth says
What’s up with a high b12….what would cause that? I’ve not been able to get an answer for the reason for a high b12.
Thanks!
Freddd says
Elizabeth, High serum cobalamin in the absence of supplementation to explain it, is usually from liver damage of some sort causing cellular breakdown in the liver and releases the liver’s b12. It can also sometimes be caused by kidney damage. A 10mg injection of mb12 or hydroxycbl can be used as a test the kidney function. If you see darker urine towards orange if normally very yellow or towards pink or red if uncolored and watery without a lot of b-vitamins. If your liver and kidneys are good, there may be another cause but I don’t know what that would be. How high are we speaking? Some several percent of meat eaters statistically could have levels above 3000pg/ml. At above about 6000-12,000pg/ml the kidneys kick in substantially. Below that it is a much slower excretion by the liver. High b12 by itself isn’t anything to be concerned about. Mine is estimated to be about 200,000pg/ml which is what I need to keep Subacute Combined Degeneration from progressing and in remission, which makes for really expensive urine but does the job while in the body. The treatment for cyanide poisoning is multiple 35 grams (35,000,000 mcg) IV infusions until all cyanide is flushed from the body and makes for really lurid red urine.
Elizabeth says
According to the numbers you give, my level is not high, but it is flagged as high. I was not a huge meat eater at the time of the test…I have since added more snimal protein to my dist. The level was 1524 pg/mL.
Urine is light to clear.
Thx for the info!
Freddd says
Elizabeth, the terribly low “high” level is purely a statistical abstraction that is meaningless. It doesn’t predict lack of deficiency symptoms. It doesn’t predict lack of effectiveness of mb12/adb12. It merely says that 97.5% have a lower cobalamin level than you in a chronically b12 deficient population.
Rose says
The normal serum test for B12 levels is inaccurate as it contains both active and inactive B12. Bacteria in the gut produce inactive B12 therefore raising B12 levels which gives a high reading. Anybody wanting to know their B12 status should request a specific test for active B12.
Moongirl says
What is the specific active B12 test?
Rose says
Just ask for an active B12 test.
Freddd says
Hi Ashly,
If the b12 is working well then you could have either or both of 2 induced deficiencies. Pick which group or groups you have nerw “feeling awful” symptoms. These are most likely but there are other possibilities.
Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
IBS – Steady constipation , Nausea, Vomiting, Paralyzed Ileum, Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, neck muscles, Muscle weakness, Abnormal heart rhythms (dysrhythmias), Increased pulse rate, Increased blood pressure, Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.
Group 2a – Both
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Group 2b – Either or both
Headache, Increased malaise, Fatigue
Group 3 – Induced and/or Paradoxical Folate deficiency or insufficiency
IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
Jacquie says
Hi Fredd, i was reading this post and dont quiet understand it. I have also signed upto your other site but its stating i dont have sufficient privileges to post. I am in need of help/advise…i have suffered for over 10 years with depression,tiredness/exhaustion yet find it hard to sleep and wake at least every hour or so, pins & needles & numbness of both my feet/legs/hands and arms, constant diahorrea (i cant eat or drink a single thing without having to run to the toilet virtually straight after), stomach pains, bad headaches, aversion to light, lower back pain and neck pain, nose in ears, to name but a few symptoms and in 2003 i was diagnosed with re-occuring cysts on my ovaries,uterus & womb (which cause severe pain), in 2007 i had CIN 3 (borderline) cervical cancer and had a large amount of cervix cut away, in 2009/2010 my left pupil dilated massively and i had lost all deep tendon reflexes – i was diagnosed with holmes adies syndrome and in october i was diagnosed with B12 deff (my B12 was 133 and low folate), i was tested as my previouse mentioned symptoms was getting worse and i also started to forget things (memory fog) and bad pains in stomach and lower back, i was put on a course of B12 injections (1 a week for 10 weeks) on occassions i had 5 of cyanocobalamin to start of with then i had 5 of hydroxocobalamin, then a week after my last injection i had my bloods retested and B12 came back 884, my gp then said i could only have them every 3 months. i must add her that when i had my first injection i felt on a high the next day but the day after i went on a right downer, as i went on having the injections my symptoms started to ease until towards the 7th injection i could go a week with no pain and other symptoms lessened. But within just over 1.5 weeks of not having my b12 jabs all symptoms was back and seemed worse to the point i was up most nights crying and wishing i had never started them as then i wouldnt have known what it was like to feel pretty much normal again. i wrote to my gp begging him to re-instate my b12 jabs and listed my symptoms before b12 jabs and also what symptoms had improved during b12 jabs and what symptoms had come back since not having jabs. He agreed to give me one (which was a month later from my last one) and i felt pretty good for at least 2 weeks but they came back again. i asked if i could have them 2 weekly or at least monthly and if i could also be referred for the active B12 test that we have in the uk. He will not refer me for this test and agreed to give me another b12 jab a month from my last then wanted me to have another blood test after this one. I had the blood test and B12 came back 954. My intrinsic factor has been tested twice and is ok. He also sent me for a scan due to the pain in my stomach. The hospital did an external scan then asked if they could do an internal scan (vaginally) and i now have a tumour on my right ovary. My gp has now refered me to a gyneocologist and i am having my right ovary removed along with the tumor and also they are wanting me to have a full hysterctomy including taking my cervix away. I am now again back to b12 jabs every 3 months. can you please advise or help on this as i feel really bad. Also my sister (whom is 5 years older than me) has just been diagnosed with b12 of 33. My neice has also just been diagnosed with b12 of 158, we think my son may have it as he has all the symptoms for perniciouse aneamia but he is scared of needles and hard to get him to be tested. I also think my 5 year old little girl may have it as she is showing quiet a few symptoms (pins & needles in legs,feet and hands, headaches, aversion to light, very emotional, stomache pains and wakes up several nights a week crying with pains in her legs). I look forward to hearing from you. and thanks in advance Jacquie
Freddd says
Hi Jackie,
So I take it you registered and then clicked on my name to send a message. Instead you received the “no permission” response. You are not allowed to edit my profile. To message me you have to go to your inbox and start a private conversation. You can feel a lot better to the extent that b12 and cofactors are involved. If you are on a “chemo” drug that blocks folates, many do to stop cell reproduction, and that will make you sick. Make sure with your doc that it is ok to take METAFOLIN, (NOT FOLIC ACID) as a cofactor with b12 for helping your recovery.
Ashley says
I have a question I’m 23. A year ago I was diagnosed with anemia from b12 defiency. Worst feeling in the world. I was always exhausted and dizzy. My doc has me getting b12 injections every other week. I got better but for some reason I’m started to feel horrible is this possible? I still get my shots when I’m supposed too.
shiffa says
hey i also have the same problem,,my mcv is 106,,for how long you had to get these shots?
Joyce A says
I was diagnosed with zero vitimin B12 in my body. I couldn’t stand, sit, walk, write, or type. I was in the hospital one week, two months of in-house physicial therapy, and two months of out patient therapy just in order to stand and walk a few steps with a walker or two canes. I progressed, and after six months, I didn’t need the wheelchair, but I still use a cane when I leave the house. By getting intensive B12 shots, most of my symptoms reversed, except I have tingling in my hands and my feet have lost their feeling for vibrations. They did a stomach biopsy and found I did not make an enzyme that converts protein to B12. I take B12 shots monthly now. Unfortunately, I wasn’t diagnosed until I was almost dead. Test your elderly parents today.
DottyA says
For over 5 years I have had very high ferritin – four digits at times. All the specialists said that I did not have hemochromotitis and did nothing. I have had three phlebotomies and each time it lowered the ferretin. It has now gone into the 700 range. A new doc, covering for my doctor’s maternity leave, had mega blood tests done and it showed my B12 deficiency rating as 225 and has put me on Vitamin B 12 pills. Are these two problems (ferritin & B12) connected?
nancy says
Does B-12 have an impact on Parkinsons Disease? AND, can you give yourself the shots?
Chris Kresser says
It may if there is concurrent B12 deficiency. Yes, you can give yourself the shots once a doctor shows you how. But sublingual B12, as Fredd has described, may be equivalent or superior to shots.
Freddd says
Nancy, I was about to post about the link to Parkinson’s I have found. Right at the top of this page Chris lists some of these associated diseases and I have been trying to pin down the “how” of the association. Parkinson’s is one of the diseases that has every appearance to be linked to one of the b12 deficiencies. There are 4 specific b12 deficiencies, CNS-adb12, CNS-mb12, BODY-adb12 and BODY-mb12. People with parkinson’s have the CNS-adb12 deficiency that appears to be further complicated with an l-carnitine-fumarate deficiency. Both of them combine to shut down the neural mitochondria in the brain and spinal cord.
Not everybody has all symptoms and the symptoms can range from very subtle to extreme. During the “pre-Parkinson’s” phase the mood characteristics show a great deal of anxiety as a base condition. Sudden emotional changes or storms, can look bipolar. Sudden rage, panic attacks etc all are very much worsened by adb12, mb12, LCF once the mutual dependencies are no longer blocking each other. Often “risk sports” or pseudo risk entertainments, roller coasters, bungee jumping, parachute jumping, fast boats, fast cars, fast anything are too much and too scary. OCD or elements of it may be present. These have to do typically with neural dopamine processing. These symptoms, as well as others including certain neuromuscular, may be present or caused or worsened by benzo usage, especially in those who are experiencing what is commonly called “tolerance withdrawal” which appears to be more a late or slow onset side effect. There are a lot more characteristics to really pin it down. However, those just clarify how it manifests. Low dopamine symptoms have to appear for Parkinson’s to be diagnosed. Recent research has shown that Parkinson’s has low CSF cobalamin, elevated CSF MMA and hypothesis that 20 years or more of damage from mal or non functioning neural mitochondria causes Parkinson’s and here we have damaged neurons from low adb12-LCF and the beginning of the emotional/personality characteristics often found in Parkinson’s (or some forms of Parkinson’s) from these damaged neurons.
Most of these neuro-psyc symptoms appear to be linked to limbic system damage. The hypothesis is that 20 years or more of neurological damage from non-functioning neuro-mitochondria with low CSF cobalamin and elevated CSF MMA (non-functioning mitochondria by virtue of CSF adenosylb12/l-carnitine-fumarate deficiency as indicated by elevated CSF MMA) which has these symptoms is Parkinson’s disease. Furthermore, Parkinson’s disease is associated with limbic system damage. I think that I have identified how Parkinson’s develops with a b12 deficiency. If the damagte type is the same as in Sub Acute Combined Degeneration ad MS, I would expect to find demyelination in the neurons of the limbic system in multiple areas producing multiple effects.
During the past month I have closely observed a person in this “pre-Parkinson’s syndrom” as she has titrated onto a variety of these substances. It’s taken a full month to reach stability but with what we learned that could probably come down to 3 weeks. Just taking an injection of mb12 could feel like it puts you in hell. When these damaged neurons start coming back they are highly irritable. People react with vastly increased fear and anxiety, all day full blown panic attack feeling, severe unprovoked anger, murderous rages. One can watch the effects apparantly progress through various parts of the limbic system (a part of the brain invloved with mood and personality) with various combinations of supplements. This hyper extreme reaction to adb12, mb12 and l-carnitine fumarate appears to be a sure sign of this damage. I don’t know how much of the damage can be reversed once it has progressed to Parkinson’s but if it is like my subacute combined degeneration mine was 90% reversed and is more or less held at bay from progressing. I was perhpas days away from a wheelchair and diaper before I started the reversal program and can now work safely on a roof whereas before I was tripping over my own toes and falling becasue I couldn’t tell where my legs were.
So, a person with Parkinson’s MAY be able to reduce a large part of the damage and stop or dramaitcally slow progression. It’s tricky. There is a lot of fear in the Parkinson’s community about many supplements becasue they casue such extreme reactions. It’s possible to start them in a specific order and with lower than you might ever imagine doses and titrate. In addition to all the usual b12 startup effects like dropping potassium and increasing Metafolin needs which have to be adjusted for when the healing starts, there are the mood and personality effects that are hugely overpowering as the mitochonddria start producing ATP. They can be managed. Sublinguals of the correct brands are far superior in this to injections becasue they can be managed very precisely.
You need to be working with a doctor to go through this but also be aware the doctors have no idea at all about how these things work. What you see here right now is at the bleeding edge of understanding of what is going on. It isn’t generally accepted by ANYBODY. It isn’t even being discussed yet. I made my first post on it yesterday. I’m a systems analyst in healthcare. I look for patterns in the data and ways to aid healthcare. I’m recovered from a decades of illnesses and 10 years of disability. I’m an outsider as far as the research community goes. Except for the very rare forward thinking healthcare provider most are not going to find these ideas agreeable because they are based on natural vitamins and supplements instead of drugs.
People who have stumbled upon these vitamins in the past in your shoes have had such powerfull reactions that they don’t continue doing what might heal them by correcting the most fundamental of deficiencies. The extremety of response indicates to me the extremity of deficiency as well as specifc neurological damage and malfunction. Based on 9 years of experience with the active b12 protocol, and my own experience in healing all 4 deficiencies plus the worst kind of paradoxical folate deficiency and how it affects people I would expect that you could quite possibly be 50-75% healed in a year. Further healing of these things likely can continue the rest of your life. I will be writing up the methodology over the next week. I feel cautiously optimistic that your life could be changed for the better but the first month can be very rough and you will need some supportive people to help you go through it. I don’t know of any way to turn on the neurons again without truning them on. They heal after they are turned on and in a damaged state they are typically most unpleasant when turned on. It’s also possible depending upon damaged areas that you may feel euphoria at the same time or in succession with these other things. Also, with the damaged neurons a lot of emotional processing hasn’t happened and it is all dammed up and breaks looose when the neurons turn on so one often has years worth of emotional distress all hitting at once. I’m not trying to scare you away but rather prepare you so you don’t get unpleasant surprises.
I am certain that much benefit can result for you but I don’t know how much damage will be reversed. I would put by best friend, spouse, child or whoever through it to heal them. I would also be there to hold their hand through the difficult emotional parts. I bet my life on it and I’m still alive and the healthiest I have ever been in my life. I hope the same for you.
AnnMarie says
Thank you so much on this information! I had been extremely worried when my doctors were told me I needed an appointment with my PCP immediately about this.I’m only 19. As a child I was in an out of the hospitals. We had discovered that I have Crohns disease, Rheumatoid Arthritis and Sjogrens Disease an then I had just found out I had this. Not to be a negative Nancy but I thought three diseases were enough but now this. My first visit to my adult rheumotologist was deeply concerned about me being able to sleep an awful amount of hours an still exhausted, also I guess she had noticed that it was very hard for me to come up with words or I would just forget what we were saying. I have recently noticed that I can stare at once spot an just blank out. Has anyone had thisproblem? Personally, being a nursing student an still only a child this is very hard for me to grasp.Also has anyone heard of other methods than shots? I’m taking Humera (the worst injection in the world) and its making me want to never have an injection again! Thanks! 🙂
Moongirl says
Mary, I am reading a book called, “Could It Be B12?” and it talks about how even Bipolar can be in some cases caused by B12 deficiency. The book is written by a nurse and her husband who is a doctor. Also, B12 does affect nerves. So I would get that book and read it and see if you can find a doc to test you before you start taking a vitamin supplement. Maybe her doc would test you? Good luck Mary. Be your own advocate and be strong in caring for your own health. I wish I had known about B12 when I was 15.
Mary Wright says
Hi my name is Mary I’m only 15, but my mother has suffered from sezures for 20 years hers started when she hit her head on a pole. We don’t know what type of sezures she has yet or what to give her but last November I had a sezure and since I have been having them (when there was 350 lbs. of pressure on my jaw). I’m going to try and keep this as short as possible i don’t want to waste your time, but we just found out that she is low on B 12. We believe that I may be too. Due to the fact that I have been diagnosed as bipolar for many years and ADHD and asthma ect. I have always been very independent so sezures scare me. Do you profesionaly think there could be any connection to her sezures and her deficiancy in B12? We are hopeing that if we find her solution we will find mine. There aren’t too many neurologists that take any intrest in dealing with kids.- thank you for your time
Moongirl says
Mary, I am reading a book called, “Could It Be B12?” and it talks about how even Bipolar can be in some cases caused by B12 deficiency. The book is written by a nurse and her husband who is a doctor. Also, B12 does affect nerves. So I would get that book and read it and see if you can find a doc to test you before you start taking a vitamin supplement. Maybe her doc would test you? Good luck Mary. Be your own advocate and be strong in caring for your own health. I wish I had known about B12 when I was 15.
Chris Kresser says
Hi Mary,
B12 deficiency can contribute to some of the symptoms you’ve mentioned, so it would definitely be a good idea to address it.
Jen says
Hi Mary my levels have shown megaloblastic before but my neurologist didnt think it was the epilepsy drugs I take. I know tegretol can deplete your b12 and other epilepsy drugs. Your neuro should be reguly checking your b12 levels when blood tests are done to check your drug levels.
Annie says
I felt better after about 3 of my loading doses of hydroxcobalamin (can’t get methyl in the UK) but it wore off after a few weeks. I can only have one injection per 12 weeks now. I have tried the sublingual NO SHOT methylcobalamin but not found it helped. From looking through my bloodwork my MCV was 99.7 HGB 12.3 and potassium 3.6. Not been restested since starting treatment.
Just want to feel well.
Freddd says
Annie, From experience and a 10 brand trial with 5 hypersesnitive testers, there are two brands of Methylb12 that work as well as injections if taken properly for that to happen. Brand and technique both matter. The brands are Jarrow 1mg and 5mg and Enzymatich Therapy 1mg. There are both most excellent but slightly different sublinguals. To get good absorbtion put under upper lip anywhere along the denatl arch against gum to absorb. These absorb at approximately 15-25% over 45-120 minutes. One brand was actually a complete zero. None of the other 7 brands was above about 1.5 stars on a scale to 5 stars. Both these brands are availabe in the UK and they can also be ordered from US retailors such as iherb possibloy for a savings compared to UK prices despite duty thy may collect.
zlatibor5 says
Fredd,
What about Natural Factors Methyl B12 5000mcg? How many stars did you give to that one? I have been taking that one for more than 3 weeks, no changes so far. I can see you recommended numerous times Jarrow and Enzymatic Therapy, so I am wondering how much they can be better than the other brands.
Thanks,
Alex.
Freddd says
zlatibor5, The Natural Factors b12 5000mcg was unanamously 1.5 stars. It didn’t maintain gains on most symptoms. The fallback wasn’t as bad as the Source Naturals which was zero stars, on the way in 3 days an intoleravble after 7 days. The Natural factors mb12 was fallback in 5-7 days and intolerable fallback after 14 days. The Jarrow and ET were a good 100x better. Size didn’t matter in this comparison. Nobody could tell whether they had a 1mg or 5 mg. That only makes a diffence after near to equilibirium is reached with 1mg.
Freddd says
SInce I have talked about starting real b12s and active folate (metafolin) I should mention alll the alerts.
1- Can neutralize tetanus neurotoxin it makes for occult tetanus and very difficult to diagnose.
2 – It reverses Botox for about 24 hours per dose of mb12, also a clostridium neurotoxin.
3 – If CoQ10 is being taken when starting mb12 etc blood pressure can go sky high. This is only true during the early part of healing.
4) Potassium will drop like a rock for almost everybody for which methylation startup occurs and backlogged healing starts.
5) Need for Metafolin increases to 2400mcg or more, lots more if the person has paradoxical folate deficiency. Even a small dose of Metafolin can start more healing than the dose can maintain causing folate insufficiency symptoms.
Lyn Flynn says
Hi Chris (or should that Freddd – I am a tad confused)
I am 55 years old and have been having Neo – B12 (Hydroxocobalamin – as chloride) injections for about 12 years since I was diagnosed with Pernicious Anaemia (intrinsic factor). I used to be a strongly built athlete. In recent years I have suffered a lot of soft tissue injury very easily and cannot find a practioner who knows what to do with me. I have been put in the too hard basket! Are there any tests you can recommend for me to get back on top of my soft tissue issues?
I can, and do, suffer from inexplicable bouts of tiredness. I can put down some bouts of tiredness to down to a neck injury.
I am now lactose intolerant so use a 600mg calcium supplement with 400IU Vitamin D once daily.
I suffer from urticaria so am unable to have anti-inflammatories, pain killers (bar paracetamol) and some anaesthetics. I was using ENDEP 10 (Amitriptyline Hydrochloride) as a nerve block but started to have heart palpitations. I recently ceased the ENDEP and the heart palpitations are getting more and more infrequent. My GP did not put me on anti-depressants because I was on the ENDEP. He did not support me going off the ENDEP even though he knew about the heart palpitations.
Since injuring my neck almost 15 years ago because of the tiredness and extreme head pain, I have not always eaten properly. I live by myself. Since being put off work recently, I am trying to turn that around.
I have recently been diagnosed with Adjustment Disorder with depression and anxiety. I need your help as I am not getting it here in Canberra.
Should I have had my folate levels checked? Any advice you can offer would be most appreciated.
Thanks
Lyn
Freddd says
Lyn, I’m just a passer-by who was being discussed so I decided to chime in too. Your entire problem that I can see with the limited info you gave is that you are severely b12 deficient. The problem comes down to “Neo – B12 (Hydroxocobalamin ” which is pseudo b12. I refuse to call hydroxcbl “b12” since it only has 1% the effectiveness of real b12 (mb12 and adb12). As “b12” it is almost worthless. It will keep MCV down usually but does little else. You could be essentially fully recovered in a year on the right program. To heal the damage you have you will need ALL the usual basic vitamins and minerals; a,b-complex, C, D, E, zinc, magnesium, omega3 oils and a 5 star mb12, adb12, Metafolin and when those startfull blown healing (3 days) probably 2000-3000mg of potassium and increased metafolin titrated to full effectiveness. Good luck. Remember REAL b12s, not pseudo b12 in the form of inactive cobalamins. Everybody can develop b12 deficiencies while taking hydroxcbl and/or cyanocbl.
Lyn Flynn says
Thanks Freddd – I have, today, found a GP who may be able to assist me so will take your information to them. I am wishing to turn my life around, & you may have just given me a starting point.
Regards
Lyn
Freddd says
A general comment on serm level with mb12 and adb12. Generally body healing is best accomplished with levels around 20,000pg/ml peak or more (1x1000mcg Enzymatic Therapy or Jarrow for 45-120 minutes under lip up to 15-20mg daily of Jarrow 5mg). For CNS damage a constant average serum level of around 200,000pg/ml is often needed to reverse subacute combined degeneration and other CNS damage. This is achieved with 3x10mg SC injections daily. However, these levels are titrated to by effects. A trial of 50mg of Jarrow for 120-180min will demonstrate what such injections can do.
Benjamin Lynch ND says
Hi Freddd –
Please contact me via my website contact form. Use the link above. I want to respect Chris’s website.
Thank you
Dr Lynch
Freddd says
Clive, 1000mcg of a 5 star methylb12 (Jarrow, Enzymatic Therapy) is so far superior to ANY number of any dose hydroxcbl that you will be pleased. However, it is more than just b12 you need. In order to heal neurology with some reliability and possibilty of completeness you need basically a good b-complex, a,d,e,c, magnesium and calcium (normal amounts), 5 star methylb12, adb12, Metafolin, zinc (about 50mg daily), omega3 oils, l-carnitine fumarate as a minimum.. hen abouyt 90% of people will have rapidly decreasing potassium typically 3 days after healing starts (3 days after starting) requiring approximately 2000mg-3000mg (titrate to effect) of potassium daily in divided doses. Also depending upon your folate polymorphisms somewhere between 2.4mg and 15mg of Metafolin. As some people have very extreme responses to mb12, adb12, l-carnitine fumarate as they are depsarately deficient, they need to be titrated, with some people starting as low as 50mcg a day. Start the basics with mb12. A quarter of a 1mg tablet under the lip for an hour will tell you what your response is going to be to mb12. Many start at 1mg and some people think that the lighting up of the nervous system is terribly unpleasant. When the nerves heal first all the damage becomes very obvious with a strong increase in the perception of the symptoms and damage. Then often shootng pains then painful buzzing/tingling slowly fading to more common moderate tingling fading to hypersensitvity then finally to normal sensation. it tends to walk through the symnptoms backwards from the ordeer of onset. Feeling suddenly sick on the 3rd day approxximately is low potassium, sudden muscle spasms while resting, heart palpitations, mood changes, personality changes, malaise etc are usually all potassium.. Induced folate deficieciency/insufficincy results in peeling fingertips and around nails, IBS, and a host of other symptoms. Increase metafolin as folic and/or folinic acid and/or green drinks or veggie folate can also block metafolin,.
Adb12 can cause extreme reaction depending upon which deficiencies one has and so can l-carnitine fumarate. Those who find either of these two intolerable and anxiety provoking have a specific set of symptoms and damages and need a slow titration of these to have a chance to heal the problem.
lauren says
What happens if you are B-12 deficient but then have allergic response to cobalt? The supplements make me brake out into hives on the palms of my hands and the soles of my feet. Im in a bit of a pickle here.
Freddd says
Lauren, Most reactions to b12 is to the flavoring, fillers, sweetners or other than the cobalamin itself. Try the Enzyamtic Therapy and Jarrow brands of methylb12. Also, paradoxical folate deficiency really hypes up allergic response. This may be telling you that you need a sizable dose of Metafolin. Deplin comes as 7.5mg and 15mg. Folate deficiency and mb12 deficiency causes hyper reactivness of every type especially allergy for many.
Greg says
Lauren,
There have been some reports of allergy to nickel and cobalt, but they are not so well documented.
Now the thing is that these allergies are to free cobalt, not to cobalt bound into the corin ring in vitamin B12. You may have a problem dealing with cyanide, which is in the cyanocobalamin supplements, also marketed as vitamin B12. You could try methylcobalamin and/or adenosylcobalamin. In these natural forms of vitamin B12, the cobalt is actually hidden in the molecule in a fashion that would be very hard for an antibody molecule to get to.
The best way to tell would be to get the mix and put a small amount (a drop) on your skin and see if you get a reaction to the material. You can try the material from http://transdermoil.com (Red B12).
Fredd is right about the material that is mixed with the vitamin B12 (the excipients), many people react to the salts etc, particularly in the cyanocobalamin (provitamin B12) form.
Clive says
I have been having neurological symptoms + anxiety/depression for about 3-4 months.
The neurological symptoms have included pain, cramp and numbness in my feet and pains up my legs into my backside.
I have recently started on a course of 6 loading injections of hydroxocobalamin. I am also starting Freddd’s protocol. Is combining the two an overkill?
Considering the extent of my symptoms – how long before I can expect resolution of my neuropathy. My mental state is now quite a bit better after 3 injections.
Also what does the “nervous system waking” up feel like as compared with the nervous system deteriorating.
Cheers
Clive
Jenny D says
I posted on here back in Jan after having my active b12 test done. The result was 40 showing borderline difficient. My GP prescribed cyanocobalamin and folic acid as my bloods showed my folate level was low. After 2 months I went back for a repeat prescription and gp said after this he was not going to give me anymore as my levels are fine. I got a list of blood results from my gp which showed my mcv and mch high throughout this has been ignored. The GP said to me to go and buy my own B12 , I said to the GP why are injections prescription only if it is something that patients should treat themselves. I see a neurologist next week as I have epilepsy, sclerosis of hippocampus, and severe neuralgia and hope to find out why my levels are low. What should I ask my neuro for or am I better self treating. I have severe nerve pain all over sometimes feels like barbed wire inside me.
michelle says
Hi.
I recently had a urine b12 test which came back normal and a blood test b12 test which came back 740.
My iron level was done too which was low at 3. I have been told a few times this year that I was anemicI have also had tests done that show I am b3 and b6 deficient. I have breathing problems that I need oxygen 24 hours a day, I try to follow a wheat free diet as I know this causes me problems. I am from the uk. What would you suggest I take in the way of supplements to help with this, and is there anything I should be doing.
sanpat says
Hi,
One of my cousin’s wife is suffering strange disease. She is of 28 years and since last 1 year she is having symptoms like suddenly her whole body get tighten like wood, she feel pain in chest and be in such condition for 5 minutes to half an hour and after that she comes to normal and behave like normal with some tiredness. She consulted many neuro surgeons but they said its just depression and tension and prescribed some hypnotics and anti depressants. But after that also her conditions is same and no any improvement.
Can you put some light on this case and guide what to do as whole family are in such a dilema that what to do??
Please reply urgently..
Peter Modely says
Hi I am a practitioner of Acupuncture,please try this ancient modality,you will be surprised.
sanjay says
Pls reply in details to [email protected]
Marian says
Have you heard of Stiff Person Syndrome. This is one of the main symptoms of body getting stiff.
Moongirl says
I have suffered progressively worse over the last 10 years with IBS-like symptoms, extreme tiredness, brain fog, joint and muscle pain, weakness, “depression and anxiety”, teeth problems etc. I was on PPIs for GERD for 15 years. I stopped the PPIs in Jan and felt better for a month (not NORMAL just better) and then bammo, took a big drop. Just finally found a doc that cares about nutrition. B12 level is 221. D25 is 11! Progesterone was a little low too. I start injections for B12 today. I’m on D3 5000IU orally. And I am starting treatment also for SIBO/Candida even though my stool test showed digestive enzymes were off, not bacteria and yeast. A little worried about that…. hoping I don’t have a tumor on my pancreas or anything. :/
Olivia says
Hi,
I was told (after blood tests) that my B12 was 165….. i go to a state clinic, and they arent too helpfull on telling me more about this. All ive been told is that i must go for an injection once a week, and take 2 Vit B12 Strong tabs every morning. Thing is, i dont know the seriousness about the whole thing. So i havent been taking the tabs and havent been going for all my injections. I came across all of this now, because i thought i should research it. I went for blood tests, because when i wake in the morning, or during the night, my fists are clenched, and my hands tingle often (in my sleep).
Chris – I hope you could shed some light on this for me………….
Thanks
Olivia
Chris Kresser says
If you’re not a vegan or vegetarian, with a B12 that low it’s probable you have pernicious anemia. It’s an autoimmune disease that inhibits B12 absorption. You should get your anti-parietal cell antibodies tested to determine if you have it. Injections or sublingual B12 are crucial to bring your levels back into the normal range (which is, in my opinion, >450)
Olivia says
Thanks for your reply Chris.
Really appreciated. Will do the neccessary.
Bill VanHorn says
Do you think that B12 might help my restless leg syndrome?
I have a horrible case of restless legs and I have been taking 6 – 50mg tablets of Tramadol every night for years. I desperately would like to get off of Tramadol or take something that may not cause as much damage to my body. I have tried all of the prescription medications and Tramadol works best unless I was going to take a bunch of hydrocodone each night instead.
Thanks for your help and all of the great information that you share.
Chris Kresser says
Yes, I have seen it help with RLS and neuropathy is a classic symptoms of B12 deficiency.
Alex says
Hi,
I have been suffering from depression, attention deficit, Tics/OCD, brain fog, speech issues for around 15 years. It just started suddenly for me and it is still there. I tried many supplements, since I knew pretty much that mainstream medicine can not do much, and I did not want to be medicated and sedated on everyday basis. I still deeply believe there is some underlying issue and I am still very committed to find that.
My natural doctor did some tests and told me to take B12 of 10,000 mcg every day (2×5,000), even though I have level of 426. Do you think that is possible to have all these issues due to low B12? When I see other people here, many of you have some neurological issues and also some physical as well. In my case, only neurological issue would be stuttering. Physically I feel fine, I can exercise, and usually I don’t have fatigue.
Would it be possible to be strong physically and to still have B12 deficiency, with mostly psychological problems.
Thanks,
Alex …
SK says
Hello Alex – did you get a response to your post? My son who is 26 may benefit from a response as he appears to have similar symptoms as you.
Thanks
LYN FLYNN says
Hi Chris
I have monthly B12 injections because of Pernicious Anaemia (Intrinsic Factor). Should I have my B12 levels checked regularly? Is it possible to have too much B12 stored in my liver and, if so, can this cause me other health issues?
Regards
Lyn
Jane Nicolson says
I have been taking B12 shots and believe that I will have to take them to maintain B12 levels. I’d like to get the methylcobalamin instead of the cyanocobalamin because of long term use would be healthier.
I travel overseas often so location is not a factor. Do you know where I might procure?
Julee Ellison says
Chris, have you ever heard of anyone taking B-12 and it having the opposite effect? I have stopped taking the sublinguels because I was feeling so tired and dragging bad. I quit taking them 3 days ago, and for the last 3 days I have felt much more normal and energetic. Note: I’m the one with a high reading of 900, but my other test results say that my body is not absorbing the B-12. Thanks!!
Mark says
I was having the same problem – started supplementing – 4 great weeks – then 2 weeks of total fatigue – then read the magnesium miracle and realised the importance of magnesium as a co factor and that although I had been taking Magnesium it was causing a lot of trips to the toilet and so in reality I was not really taking magnesium and thus becoming deficient – I changed magnesium to the Ancient minerals Mag. Spray to boost levels immediately and Douglas Lab’s Animo-Mag 200 tablets that bypasses the intestine and after 2 days the difference is amazing.
You could check your magnesium level by getting a RBC Magnesium Blood Test
Since starting supplementing I have gone (B12) from 156 to 812 in 6 weeks but of course this is just serum levels not an ‘active b12 test’ so my levels are similar to yours and this is something along with folic acid levels that I would check out and also (v. important) D3 (25OH)
Mark
Julee Ellison says
I normally take my B-12 in the morning … and I do take Magnesium, but I take it at night. I take Doctor’s Best 100% Chelated Magnesium … 300 mg. So, should I be taking the Magnesium in the morning along side the B-12?
Mark says
I’m taking a total of 600mg per day (400mg is the suggested daily dosage) and I take it every 4 hours (150mg x 4)
I suggest you read the magnesium miracle and get a test
Mark
Julee Ellison says
Okay, I went and read some … I will spread out the Magnesium and start taking the B-12 and see if that helps. Can I ask what brand you’re taking on the Magnesium … the 150mg’s?
Mark says
Douglas Labs Magnesium Citrate
Julee Ellison says
Thank you so much!! I took one Magnesium this morning, and one 5mg B-12 …. I’ll break up taking the Magnesium through the day. I sure hope it makes a difference. HUGz!
LYN FLYNN says
Julee and Mark
It is possible to have too much magnesium in your system. I suggest you get your bloods taken which will indicate what your magnesium levels are on a given day. Then you can go from there with the advice of a GP. You should always get the advice of a professional regarding the use of supplements.
Lyn
Paul says
It is exceedingly rare to have too much magnesium in the body. The cases usually involve kidney disease, IV magnesium or massive continuous doses. A woman in labor is often given an IV of 50,000 mg to stop labor contractions. It does not hurt the woman or the unborn child.
You’ll know when you’ve had too much magnesium and will be running to the toilet to get rid of it soon enough.
Still… as the first reply states, you should have an RBC analysis to determine levels before supplementing. That includes CALCIUM supplementing… a far more dangerous mineral. Even the American Dairy Council mentions ‘toxic’ levels of calcium being anything above 3000mg. I’m sure many American women exceed this level with blind calcium supplementing and dietary intake.
Mirriam Milapo says
Hai, am 36 years old and last year December was diagnosied with vitamin B 12 deficiency. Intrisic factor antibodies were positive as well as pariental cell antibodies. Iam taking injections every month and have my enegy has improved. but am not sure whether it is penicious amemia or not because i don’t know what shows that its really penicious. i did an endoscopy and my stomach and intenstine were all okay.
Mirriam
jen says
I went to my gps other day to get repeat prescription, the gp I saw said he was not going to give me anymore tablets after this lot. I am taking folic acid 5mg and cyanocobalamin 50mcg, I asked for some injections which he has refused to give me. He then said go to a health shop. Why is it prescription only for injections if it something nhs doesnt want to treat when they can see there are severe neurological damage. My original tests showed normal b12 levels until I had the active test, the gp contradicted himself after originally saying my levels are fine that some people can only be a tiny bit deficient and have symptoms while others can have very low levels and be fine after agreeing with the nhs guidelines and refusing to treat me until I had the active b12 test done. What is the best thing for me to take for low active b12 and what causes active to become low. I have neurological symptoms and am under a neurologist. I have epilepsy which has become worse because of this.
Mona says
Some bloodwork results today. The ones that concern me are my B12 ….. 375 and Ferritin ……. 9.
Why it concerns me ……. My B12 has dropped from 464 (last checked December ’11) to 375. I know it doesn’t sound low and not much of a drop, but it has taken me almost two and a half years to get to the level of 464 from original diagnosis of B12 deficiency with a level of 85 in December ’09. I continue to take sublingual Methylcobalamin daily and get IM shots every 3 weeks. My next B12 level check is in 3 months. I hope, cross my fingers, it won’t be lower yet than 375.
The Ferritin I guess isn’t too low but still lower than it should be. “Normal” level is 12 ??? My doctor doesn’t think I need to take iron daily because I am “not anemic and never have been”. If my Ferritin is low is my iron low too?
I guess what I am wondering, with numbers dropping, in the back of my mind could it still be Pernicious Anemia that caused the B12 deficiency. I was tested for it in April ’10 ….. Anti parietal cell antibody positive, intrinsic factor negative. With no definitive reason as to why I had such a severe deficiency, it still makes me think of PA, though my doctor totally thinks it is not and never was. On a side note thyroid is .89 and Folate is 37.
Thanks for listening to my ramblings and I hope I didn’t confuse!
Rose says
Hi Mona. That ferritin level sounds very low to me. I don’t live in USA, but from memory, normal ferritin levels here in NZ are between 12 and 200, but you can’t possibly feel normal on only 12! Not in my experience anyway. I tested 9 when it was discovered that I was low in ferritin and it took months of ferrogradumet tablets and my levels had to rise to about 75 before I started feeling better. My levels are now 140. Low thyroid function can also affect your ferritin levels. New guidelines state that between 0.5 and 3 is the normal range and most people are best at about mid range. Old guidelines state the levels between 0.5 and 5. I was 3.3 but knew something wasn’t right. I had to search the internet for this info and finally got my doctor to prescrive levothyroxine although I now take natural thyroid replacement. One thing that can affect your thyroid and B12 levels is a hidden gluten intolerance. That was the underlying problem that I had so I am now on a GF diet. Here is a link about the new thyroid levels. Good luck!
http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm
Rose says
Oops! I missed your thyroid reading. Doesn’t sound like that’s a problem for you.
Mona says
Thanks for the link Rose!! I haven’t read it yet but surely will. My thyroid is normal. It tends to go up and down but right now I will be happy with it being in the normal range.
I think that I had a blood test for something to do with Celiacs. I think it was IgA ??? I will have to check back on my reports for that. That test came back normal.
As for my Ferritin. I would think that with a level of 9 that my doctor should want to check my iron level?? Surely if my storage is low then the iron would be low. Then with my B12 going down, that is disheartening when I have been trying so hard to get it up to a good level for the past two and a half years.
Thank you again for your comment. I always appreciate new information!!
Charlotte says
Hi
I wonder if anyone could help me, I am a bit confused from everything I have read and could do with some advice (I am a 26 year old female):
I have had symptoms of extreme lethargy, feeling down, electric shocks and an upset tummy for the last 3 years and have been back and fourth to the doctors several times. The doctor offered me anti-depressants but nothing further. I knew I wasn’t depressed!! Last April the doctor did a blood test and my B12 level came back at 130, he gave me a chat about diet and told me to take some multivitamins that contain B12. I went for a follow up test in June and it had gone up to 180 which was just below the 185 that they considered normal so he decided it was down to my diet and said I needed to follow up. However since Christmas I have felt worse than ever – I can easily sleep for 14+ hours at night and still be tired – I have quite a serious job and have been finding it almost impossible to concentrate, I have used all my leave up taking days off to just sleep. I went back to doctors desperate, they did another blood test and my B12 came back low again, this time at 95 despite the facts I am taking pills with 140% of my recommended daily intake.
The doctors gave me another chat about diet (I have a normal diet and eat meat/fish dairy etc). They have taken my blood again to check for intrinsic factor (I think that’s what its called?) and have sent me a referral letter to make an appointment with a hematologist. I am a bit worried as waiting list for the hospital appointment is about 8-9 weeks. I asked the doctor if I would be starting injections before then but they said it was best to wait until I have seen the hematologist. I am getting concerned that 95 is probably quite a low reading and 8-9 weeks sounds like a long time to wait? I should get my results from the intrinsic factor blood test in a few days. If i do have enough intrinsic factor then is there some other reason why i am not absorbing vitamin b12?
Any advice anyone can give would be hugely appreciated.
Thanks
Charlotte
Mark says
Hi Charlotte
firstly you can’t overdose on B12 so the daily recommended dose is irrelevant. The ‘scale’ in America is totally wrong, in simple terms, any serum level below 400 should be a cause for concern and below 200 (mine was 156) is v. serious in terms of neurological symptoms.
Most doctors are severely uneducated about this and I think it’s vital that you read this book ASAP and educate as much as you can about B12 deficiency’s:
http://www.amazon.com/Could-It-Be-B12-Misdiagnoses/dp/1884995691/ref=sr_1_1?ie=UTF8&qid=1331509457&sr=8-1
You certainly need to find out why your level is so low if its not diet and this could be a number of reasons…Lack of Intrinsic Factor, Pernicious Anemia and a few other issues that are mentioned in the book and these forum posts like Celiac Disease.
In terms of getting your levels back up, you may wish to wait for the I.F. blood test result to see if this is the problem but I would strongly advise that you consider Methylcobalamin as the kind of B12 that you use to raise your levels as opposed to Cyancobalamin.
I found most success with these:
http://www.amazon.com/Jarrow-Formulas-Methylcobalamin-5000mcg-Lozenges/dp/B0013OQGO6/ref=sr_1_1?ie=UTF8&qid=1331509665&sr=8-1
I wouldn’t wait 9 weeks with a level of 95 – a lot of times (but not all) a result of that level means Pernicious Anemia.
Should should also check out and join the forum at the UK Pernicious Anemia Society, as there are a lot of very experienced posters on there that are v. happy to offer their help, advice and experience.
http://www.pernicious-anaemia-society.org/
Finally, I would also check your D3 levels, but make sure the blood test you have is the D3 (25OH) test.
Hope this helps….
Mark
kassa says
First of all, Chris – thank you for all you do and also to everyone for sharing their experiences and additional resources on this site!
After 5 months into Paleo and supplementing with D3 and Omega 3, my D3 hasn’t improved much, currently at 47 and B12, just tested first time, is at 144. I’ve always been anemic or lower side due to Beta Thalassemia minor, so we always have been told in the family – not to worry about low HB. I know it’s a different topic, but any suggestions about what should be the acceptable blood and iron markers for Thalassemia carriers?
Now reading all this about anaemia and B12 connection, how much do I need to be alarmed? After doing so well on Paleo, lately I’ve been having the symptoms of fatigue, hair-loss, mood swings and increased heart beat waking me up at night, headaches, continues dull stomach ache, foggy head and forgetfulness (I’m 39 yo female). Is this due to anaemia or adrenal stress or blood sugar disragulation… or all together, who knows… I”m just confused where to go with this now. My doctor only suggested to supplement B12 as per “instructions on the bottle”. She said to wait for 3 months before starting on injections.
Current results:
D3 – 44
B12 – 144
These blood exam markers are all below the lab range:
HB 11.1
PCV 35.5
RCC 5.89
MCV 60fL
MCH 18.8 pg
MCHC 31.3 g/dL
White cells are lab mid range
Platelets 329
Iron 14 umol/L mid range
Transferrin low 2.1
TSH normal 2.87
Total calestorol increased 5.2
LDL increased 3.8
Triglyceride came down to 0.8
Fasting glucose – average 5
After meal 2 hrs – average 6.2
A1C- not tested
I’m about to go for the ultrasound for stomach ulcer test
H Pylori test came negative after antibiotic treatment
Any suggestion about how do I go about helping to all this, what do i start with first? I’ve increased my carbs up to 120gm and reduced exercise to 2-3 times a week to reduce the stress factors.
Probably the good doctor is the first I need which has been the challenge by itself, if anyone has any suggestions about MD or naturopath in Melbourne, au, I’d be greatly appreciated!
Chris Kresser says
B12 levels that low are consistent with pernicious anemia. I would get your anti-parietal cell antibodies tested to see if you have it. Oral B12 will not be helpful to you if you have pernicious anemia, but sublingual methylcobalamin (active B12) or hydroxycobalamin (precursor to both forms of active B12) can serve as an alternative to injections in some people with pernicious anemia.
kassa says
Thank you Chris!
Freddd says
Chris Kresser, When methylb12 solution is exposed to light it is photolytically broken down to hydroxcbl which then reaches an equilibrium state with aquacbl. This is just one of the things I found out trying to make methylb12 reliable and predictable in effectiveness. In addition adenosylb12 and cyanocbl both breakdown photolyticaly to hydroxcbl. When this happens the injections are prone to causing an acne type lesion on the scalp, face or even sometimes, body. This is the way many pharmacies ruin the methylb12 that they prepare. Injecting it with a transparant syringe can allow enough light to casue the acne. I wrap the vial and syringe in foil so as to preserve the effecriveness of the solution. While the body can reclaim about 10-20mcg or so a day of hydroxcbl converting it to methylb12 it’s more of a breakdown product in practice. Methylb12 is the precursor for all other forms of b12 within the body according to that article. Recent research indicates that there may be dozens of trace amount special purpose cobalamins all derived from methylb12, the most reactive form with a +1 oxidation state.
Veronica says
Chris,
I have a few of questions regarding B-12 deficiencies. They are as follows:
In addition to determining a B-12 deficiency, can a vitamin B-12 serum test determine if one has a B-12 malabsorption problem? If one has a B-12 malabsorption problem, likely as the result of no intrinsic factor, will they have to take B-12, preferably in the form of methylcobalamin, intramuscularly?
How can I tell if I have no intrinsic factor? Can it or is it caused by having hypochlorhydria/ achlorhydria?
If one has a B-12 malabsorption problem, are they most likely to have a folate malabsorption problem? If so, will they have to take folate, preferably in the form of methylfolate, intramsucularly as well?
Can nutiritionists or naturopathic doctors prescribe methylcobalamin and/ or methylfolate injections?
Freddd says
Kassda, With an MCV of 60 you appear to have iron deficiency anemia ansd who knows what else. A b12 or folate deficiency macrocytic anemia would have an mcv > 100. Severe iron deficiency can maske that.
Kristin says
Here is a question out of left field I’m sure….
I was B12 deficient for over 2 years… level was as low as 130… started oral suppliments and never got higher than 150. Internist started me in B12 injections once a month. The GP now suspects I might have Lyme or a Lyme co-infection called Babeosis, which i understand can really decrease the number of red blood cells and have a lot of the same symptoms as B12 defiency. I’m just wondering if this Babeosis can affect B12 levels too… might there be a connection. I’m in Canada… so Lyme in itself is a complete mystery to the doctors up here.
M.R says
Maybe it’s a strange question, but can being B12 deficient due to diet for a long period of time permanently affect your ability to properly absorb B12?
I was vegetarian for many years and was diagnosed with a B12 deficiency (130 pg/ml). I was put on a course of injections. After my B12 serum levels were at an acceptable level my doctors stopped the injections as they thought the cause of the deficiency was dietary (I had been tested for the parietal antibodies twice, and celiac once and these tests came back negative). I changed my diet, but after 6 months of regularly eating fish/meat my B12 levels have dropped again and symptoms are back. So it looks like a malabsorption problem even though it’s not likely to be pernicious anemia or celiac.
Is it possible that due to being B12 deficient for so long that my body has somehow lost the ability to absorb dietary B12?
Chris Kresser says
Yes, I’ve heard this many times from vegetarians and vegans. B12 absorption is complex and requires many steps, and if any of those steps are compromised B12 absorption will be impaired. You may need high-dose sublingual methylcobalamin for an extended period to keep your levels up. You’d also want to make sure you’re getting other methylation co-factors like folates, trimethylglycine and B6.
marie says
The doctor that diagnosed me with pernicious anemia 2 decades ago (I was 35), saved my life. I thought I had diabetes. I had lost feeling in my feet and hands. I couldn’t put my head down and then up again without falling over. He took one look at me, and said, “it could be pernicious anemia”. What would give him that idea right away?? I have vitiligo. There are several other autoimmune diseases that go “hand in hand” with vitiligo: Thyroid disease, pernicious anemia, and diabetes. I have everything except the diabetes. I was on B-12 injections until a couple of years ago when I started to take Metanx. I am now symptom free, and have noticed a decrease in hand and foot problems, such as pins and needles, and low level pain. I am pain free and am able to function normally.
karen says
my daughter is 18 diagnosed with PA ten months ago following routine blood test when B12 was 99, she did not recieve intensive course of injections but went straight to 3 monthly. since then her readings have been 123, 205, and 173. she is also taking iron supplements Up till now her folic acid was ok but has recently dropped and is being monitored. The B12 lasts about 6 to 7 wks then the fatigue comes back and she reverts to sleeping patterns of 14 hours, but gp and consultant do not want to up her B12 intake. I feel that she should have been given the intensive course when diagnosed and would like her to get 2 monthly injections surely an 18 yr old sleeping 14hrs is really bad. Intrinsic factor antibodies test came back negative.
Jinny says
See my post above on February 21, 2012 at 11:36 am….
MGH says
Hello,
Can anyone recommend the best sub-lingual b12 for a Crohn’s sufferer?
Or, can anyone explain whether it is possible to obtain and self-administer injections?
As you may guess, I don’t have health insurance….
Thanks very much in advance, MGH
Chris Kresser says
You can try something like this: http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0
Sandeep Soman says
Sir,
In my case, all reports are normal but I have been told that B 12 deficiency is a problem. I have been advised to take tablets of B 12 for one month where a Doctor has said that 15 days later, observations will be done and further course of action will be decided if required.
However, the issue is that I become pale with experiencing loss of physical power and results in dullness. If I walk, it gives me a feeling that I shall fall down. Fear is in mind and then if I don’t take physical strain, it doesn’t happen. This way, I cannot continue with my day to day schedule. How will I survive if I don’t go to my office daily because of these problems? It is disturbing me a lot and this phase has turned me down completely. Please suggest something. At this moment, I am taking Homeopathy treatment since I don’t want to go for any other type.
Jinny says
Hi All,
Here is a great group I found on Facebook. It is called Pernicious Anaemia Society and here is the link: https://www.facebook.com/groups/108861749243527/
Here is an paragraph from one of their posted: (this article has many links provided that may be of interest)
3. A research article by Scand J Haematol(l980) 25,401406 states that B12 levels are dependent on folate status. This means that a person could be folate deficient which causes the B12 level to go low. Once the person is treated with folic acid this also returns the B12 level to normal. However, if you are already deficient in B12 and getting B12 injections the artiicle may explain why it seems the injections are not working the way they should. When your folate level is low, it causes the B12 analogues (inactive B12) to increase and the cobalamin (active B12) to decrease. Inactive B12 or B12 analogues is the B12 your body cannot convert. Active B12 is the B12 your body needs and can use…Methylcobalamin and Adenosylcobalamin are the two active forms of B12 and are what your body converts cyanocobalamin and hydroxocobalamin injections to. The link to the research article is below:
http://www.ncbi.nlm.nih.gov/pubmed/7221475
3. Learn as much as you can about PA because most doctors are not forthcoming with information regarding PA/B12 Deficiency. You can read more on PA at the following links below:
http://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/
http://emedicine.medscape.com/article/204930-overview
http://www.patient.co.uk/doctor/Pernicious-Anaemia-and-B12-Deficiency.htm
and for more information including many research articles please visit the Pernicious Anaemia Society website and click on forum:
http://www.pernicious-anaemia-society.org
cacey says
I’m a 37 yr old mother of 3. Not over weight, no thyroid problems. i’ve been having numbness in my right thigh. I get up an immediately fall. This has become more frequent as of the past 3 weeks. the symptoms have included, tingling and cool feeling up my leg. tingling in feet and hands. Headache, nausea and dizziness and tiredness. I just had and MRI and MRA today. They also ran some tests… B12 204, MCH 34.3, MCV 100.3, RDW 12.1 and RBC, Auto 3.72. is this just what B12 deficiency does or could there be something else that the MRI/MRA will show?
meli d says
I understand that glyphosate, the active ingredient in Roundup Ready herbicide, chelates minerals in plants so that they still test as being there but are unavailable to the plant. Have we considered it’s having the same effect on humans and other animals? http://www.google.com/search?q=percentage+crops+roundup+ready&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a And now we’re going to feed roundup ready alfafa to cattle across the country.
Michelle says
Hi, I have recently done a 24hour urine collection for B12 deficiency in the uk, I have been given the following results
methylmalonic acid – urine 1.44 mg/l
creatinine 1.17 g/l
methylmalonic 1.23 mg/g crea <2.0
acid/creatinine
I was told I am not B12 deficient, would you agree,
Thanks in advance
Mark Walles says
Wow – what an inspirational article and blog. Great stuff Chris!
So many people suffering from such an easily resolved problem…. I used to be one of them…
I used to suffer UC/Crohn’s and B12 deficiency (recorded as 210) as well as cold extremities, fatigue, jaundice gallbladder problems, joint pains and breathing problems. I am back to good health now – in fact even better than it was before I got ill. I have never taken a B12 supplement and my B12 levels have gone up to over 500 now.
Obviously B12 deficiency can cause a whole host of problems, as can zinc, magnesium or any other deficiency. When I was struggling to get well my research of the causes of B12 deficiency, digestive disturbances and chronic health conditions kept on returning to a condition called hypochlorhydria. In simple terms, a lack of stomach acidity. Achlorhydria is a total absence of stomach hydrochloric acid (HCL). Reasons for it are not certain, but I suspect levels drop as we age due to chronic stress…
I found that by addressing the cause (restoring my digestive ph) by supplementing with “Betaine HCL” within 3 weeks my energy returned and within a month ALL my symptoms resolved. I would suggest looking into restoring gastric ph, since not only might it help increase B12 levels, it will most likelyimprove absorption of all the other minerals dependent on gastric acid and intrinsic factor!
If stress is the cause of low gastric HCL then I suspect daily relaxation techniques such as breathing exercises and meditation could help the situation…
To your health!
Lynn says
Would B12 values appear normal on a blood test if large amounts of folic acid were being supplemented even if B12 was low enough to cause deficiency symptoms?
Chris Kresser says
No, but keep in mind that blood tests for B12 are looking at cyanocobalamin, the inactive form. It’s possible to have normal levels of the inactive form, but low levels of methylcobalamin and adenosylcobalamin, the active forms. This is quite common in my practice.
Debbie Inglis says
Do you think there is any connection with B12 deficiancy and essential tremors of the head?
Chris Kresser says
I haven’t seen direct evidence, but the mechanism is plausible.
Deb says
This is so true, I am “The Winner of Life” From a Vitamin B12 Deficiency. Please watch video below.
http://www.youtube.com/watch?v=CH-N3ktF25g&list=LLqr-QGZwhYj4cKNQBXA2qLg&index=1&feature=plpp_video
This is My Ulcertive Colitis Success Story. (2009) due to a Vitamin B12 Deficiency.
My wonderful son Bobby helped me wrap up my personal battle with Ulcerative Colitis in a Video. This story I hope can help one or perhaps many. I struggled for 7 years and thank my family for helping through these very hard times. We entered a contest for UC success stories and WON! My main goal is to help others if I can by sharing my story.
I want the world to know what my life was like, why I live each day to the fullest, and count my blessings everyday!
I also suffered during this time of 7 years with Chronic Fatigue, a Sleep Disorder, Fibromyalgia, Nerve Damage, Hair Loss, Bleeding Gums, Unexplainable Uterine Bleed, Chronic Inflation of the Bladder, High blood pressure, nerve damage and was in the process of being tested for MS.
All symptoms have reversed. Complete remission and reversal of the nerve damage.
It has been four years, no medications, just B12 injections. Much different than 27 pills a day, all forms of rectal medications and $7000 Remicade every six weeks.
Thanks to a very special nurse “My Angel”.
B12 injections $5 a month, PRICELESS…
Edited with correct link-Thanks
Cate says
Thanks for the video Deb. Really inspirational.
Deb says
*HERE IS THE HUGE FLAW, IT IS THE FDA REGULATED B12 RANGES IN THE US*.
The bottom line is, it is our U.S. so called “FDA NORMAL B12 LEVELS”.
Normal values are 200 – 900 pg/mL (picograms per milliliter).
As for China and other European Countries.
Normal values are 500 – 1500 pg/mL (picograms per milliliter).
They also far have less GI, Alzheimer’s, over all heath issues than Americans.
Perfect Book-Could It Be B12?: An Epidemic of Misdiagnoses.
Sally M. Pacholok RN (Author), Jeffrey J. Stuart DO (Author).
In my case, once when the deficiency was discovered my blood serum B12 test was in the 180 range. At the time, I acquired a primary care doctor who started me on a 1mg injection once a week for a month, they called it a “MEGA DOSE”. After the completion I was retested. the test result was 2400, WOW RIGHT? Now you can get a 1mg injection once a month and you will be good. GREAT RIGHT? Not so fast, in the first month I could feel improvement in all the health issues I was diagnosed with. I was ill for well over ten years, with many different conditions.
THIS WAS VERY WRONG, after 2 weeks of the super high 2400 test result, all symptoms were starting to return. I knew it would take time to get better, unfortunately I felt like I was getting worse again. So I called my PCD asking to be retested. She said NO! You just had a test result of 2400. This is when I panicked; I didn’t want to get any worse!
I decided to call my Pulmonary Dr. who I was able to explain how my Catathrenia (Sleep disorder to this date with no know cure, B12?) sleep disorder had completely stopped for the first time in well over ten years with the B12 injections. Now it was coming back too! I asked him to check my B12 level or I was going to the emergency room for a B12 test. He checked it and results showed it had fallen in this short period of time (about 2 weeks) from 2400 down to 400. He told me we know now you need to maintain higher range for me, than the average FDA normal range. We knew more than 400 for sure. So he prescribed the injections 1mg once a week. While checking my range (that has been as low as 500 to as high as 1200 over many years) we discovered my body doesn’t maintain B12!
So this told my Pulmonary Dr. that he needed to treat me according to my symptoms. The current FDA range is far too low and far too broad. How can we change that?
My children age 18 (300 B12 range) and age 22 (400 B12 range) are very low in their B12 range and we CANNOT find a Doctor to help us, as my Doctor has retired. My children are not as sick as I ended up being, YET!
I’m good, great, better than I ever dreamed. I have my life back and more!
“I truly believe it was for a reason!”
“WE COULD CHANGE THE WORLD!”
Why don’t Doctors and the FDA listen?
My video has been viewed within a couple of weeks in; 49 states and 36 different countries.
Video Link PLEASE WATCH! http://youtu.be/CH-N3ktF25g
Second video: http://www.youtube.com/watch?v=3EiUWPwz6Co.
Junto says
Thanks for sharing your experience. I too have catathrenia so I’ll be getting my b12 checked for sure! My other symptoms include restless leg syndrome (something I don’t here discussed often in teh paleo-sphere), cold feet and hands and fatigue (as well as fatigues ugly twin..depression). I’ts my understanding that b12 and iron deficiencies often occur together, perhaps both levels need to be checked. Thanks again for sharing your experience.
Jonathan
Deb says
This is so true, I am “The Winner of Life” From a Vitamin B12 Deficiency. Please watch video below.
https://www.youtube.com/playlist?list=WL9FCFAE102D2C2640&feature=mh_lolz
This is My Ulcertive Colitis Success Story. (2009) due to a Vitamin B12 Deficiency.
My wonderful son Bobby helped me wrap up my personal battle with Ulcerative Colitis in a Video. This story I hope can help one or perhaps many. I struggled for 7 years and thank my family for helping through these very hard times. We entered a contest for UC success stories and WON! My main goal is to help others if I can by sharing my story.
I want the world to know what my life was like, why I live each day to the fullest, and count my blessings everyday!
I also suffered during this time of 7 years with Chronic Fatigue, a Sleep Disorder, Fibromyalgia, Nerve Damage, Hair Loss, Bleeding Gums, Unexplainable Uterine Bleed, Chronic Inflation of the Bladder, High blood pressure, nerve damage and was in the process of being tested for MS.
All symptoms have reversed. Complete remission and reversal of the nerve damage.
It has been four years, no medications, just B12 injections. Much different than 27 pills a day, all forms of rectal medications and $7000 Remicade every six weeks.
Thanks to a very special nurse “My Angel”.
B12 injections $5 a month, PRICELESS…
Julee Ellison says
Deb, I wanted to view your video, but it s set to private.
Deb says
SORRY,
This is the correct link for video;
http://www.youtube.com/watch?v=CH-N3ktF25g&list=LLqr-QGZwhYj4cKNQBXA2qLg&index=1&feature=plpp_video
Deb
Julee Ellison says
Thank Deb!! I am so glad you are better!! HUGz!
Kris says
Chris – I have high LDL (just the LDL) from a year and half..I recently luckily checked my B12 and Vitamin D – they are very low. B12 155, Vitamin D 17.
Do you see any correlation between lowB12,VitaminD and HIGH LDL? Do you think getting them to normal range with get LDL back normal?? Please help, i am currently on Statin,B12 shot and vitamin dose.
Mark B says
Kris
I’ve had exactly the same…high LDL and virtually the same numbers for B12 and D3.
Interesting info here:
http://drgominak.com
Covers sleep disorders related to both deficiency’s and also the high LDL level (in the lectures section – the slideshow in the top left)
I’m waiting for some D3 supplements to arrive but having been on 6 spray’s a day of the Pure Advantage B12 spray for a week now and I’m noticing positive changes and improvements day after day.
kris says
Mark – Did your LDL come down on supplementing with B12 AND Vitamin D..i too have the pins and needles..please help me Mark.
Mark says
Hi Kris
I’m in exactly the same boat as you with regards to the levels of D3 / B12 and also high LDL. From all the research I’ve done I think that yes, the high LDL is a symptom of the two deficiency’s.
Interesting info here:
http://drgominak.com
Also check out the top left hand presentation in the lecture section on her site.
I think that of the two, the D3 deficiency is actually more serious.
I’m waiting for the D3 supplement but have been taking 6 sprays a day of the Pure Advantage B12 spray and the difference in a week is amazing – I’m sleeping again and the pins and needs have gone !
Julee Ellison says
Mark, I cannot find the post, but are you the one that wrote: “I found that by addressing the cause (restoring my digestive ph) by supplementing with “Betaine HCL” within 3 weeks my energy returned and within a month ALL my symptoms resolved. I would suggest looking into restoring gastric ph, since not only might it help increase B12 levels, it will most likelyimprove absorption of all the other minerals dependent on gastric acid and intrinsic factor!”
Was this you? If so, can you tell me what brand of “Betaine HCL” you take, and how much?
Mark says
sorry that wasn’t me !
Kris says
hi Mark
Did your LDL come back to normal after the b12 and vitamin D supplements? Can you share your email id?
Kris says
Mark,
You said you are taking b12 spray 6 times a day that is 3000 mcg a day. is it ok to take that high dose?
Please suggest me..also how long should you take that high dose of spray?
Pleas help
Mark says
Hi Kris
I’m currently taking 4-5000 mg per day via a combination of the Pure Advantage B12 Spray and Now Foods 1000mg Methyl Lozengers – I’ve also got some of the Jarrow 5000mg lozengers on the way as well.
It’s impossible as far as I can tell to ‘overdose’ on B12 so the high level’s i’m taking daily don’t bother me at all, all I’m interested in is getting rid of the symptoms. The central sleep apnea / shudders when going to sleep have totally gone, the pins and needles are going and getting better most days and pretty much everything else has cleared up after 4 weeks of supplementing, apart from v.mild tinnitus that has appeared in the past few days (but I have noticed that symptoms mutate and change week by week – last week I kept nearly falling sleep if I touched the backside of my upper teeth with the tip of my tongue for example and this week that has totally gone). I’m also having a few concentration issues as well, BUT (and its a big but, if I look at the improvement over the past 4 weeks since I started the spray, it’s amazing, so I realise the importance of patience as well !
I’m also eating 2 egg yolks a day, so I’m not bothered about my LDL at the moment – I just want to get my B12 levels up / get rid of the symptoms. I’m also taking 15000IU of D3 a day for the next 3 weeks and then I’ll get another D3 test (because 14.9 D3 level is dangerously low !)
Mark
Mark says
Kris, you should also google the Fredd protocol as mentioned near the top of these posts – he cured himself and a long long period of problems with very high daily doses of Methyl B12 (he recommends the Jarrow 5000mcg lozengers)
here’s the link to his protocol:
http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics
Mark
Sandra Brigham says
You just reminded me of the terrible shudders I had when going to sleep! Once I went to methl B12 vs cyano, the shudders started to fade away! My sleep apnea is gone too. I used to fall asleep at the law firm and at the computer at home. Much improved now. Just need to look at methylation and co-factors now (B6, folate, etc.)
Mark says
I’m taking these as well as the Jarrow losengers.
http://www.amazon.com/Now-Foods-Co-enzyme-B-complex-60-Count/dp/B000E7P3RO/ref=sr_1_2?ie=UTF8&qid=1331510456&sr=8-2
I chose these cos of the methyl B12, all the others seems to contain cyan b12 and so far they;re working well
Mark
Amy says
Chris – this is an excellent article. I could be your poster child on this issue. I am a former vegan slowly embracing the Paleo diet. It hasn’t been a perfect transition, but neither was being vegan. As a fitness instructor, lawyer and mom of 2 young kids, I thought that my exhaustion was due to my schedule (it is part of the problem…but there was an even bigger problem). As a “seemingly healthy” role model of health and fitness, after months of testing the truth came out early last year – severe b12 deficiency requiring injections 2x per week. I am not a fan of needles, but all of a sudden I had to become very comfortable with giving myself injections. I was a prime candidate and on a path for cancer…yep – what a rude awakening. It has been a very long and challenging road. I don’t like meat and the smell of certain meats and all seafood make me want to vomit. I have serious food sensitivities that make it challenging with some of the Paleo staples and I have had digestive issues with all the “trial and error”, but I continue to move forward and embrace the changes. I started blogging about my experiences (when time permits), but am really glad that I found your site.
Elizabeth says
Hi, I was just diagnosed with Lyme Disease 2 years ago. My b-12 levels have been high this long. I only take a b-complex daily. my hemoglobin, Hematocrit, MCV, and MCH are always about 2-3 point higher than normal. I’d like to know why my B-12 levels are so high. I suffer from extreme fatigue, weakness, severe anxiety I suffered for 7 years, and still present. Burning in my legs and tingling feelings at times. If I go to my primary DR what would he test for to see if I have a deficiency. Apparently, my Dr has not been so concerned that the level has been that high. Any suggestions?
Chris Kresser says
There’s a strong correlation between Lyme and ME/CFS, which is in turn correlated with glutathione deficiency and a methylation block. Check out the Phoenix Rising forums for more on this. Anecdotal evidence suggests that treating the glutathione/methylation issue can help clear Lyme.
Sandra Brigham says
Will definitely be looking into this. I was dx with Lyme a few years back. While I caught it within 48 hrs and was put on an aggressive course of doxy, I never felt right after. Eventually I asked for B12 testing and got a serum value of 90. By then, I’d been dealing with CF for a couple of years. While they didn’t dx me with clinical CFS, I was sleeping 10-11 hrs at night and falling asleep at the law firm during the day. My lunches were a 5 minute drive to a local trail where I parked the car and slept for an hour. I’d set a timer to wake me up to return to work. When the med estblishment referred me to Pysch for my fatigue, I found Paleo, It has given me back most of my energy. I sleep 9 hrs every night now but actually wake feeling refreshed. Naps are a thing of the past. I can hike without fatigure but can’t do HIT or work my muscles to fatigue or else I’ll crash for days. ? adrenal fatigue? Your suggestion of changing cyano B12 to methyl B12 also took care of my leg neuropthay. So thanks for sharing so new info that may, or may not, apply to me.
Veronica says
Is it true that if one has a vitamin B12 deficiency that the half white moons above the cuticles of their fingernails are missing? A nutritionist with whom I spoke said that this was indicative of a vitamin B12 deficiency. If so, does this indicate a major deficiency? I can’t afford to get vitamin B12 shots, but strongly suspect, given some of the other symptoms I have (depression, compromised cognitive fuctioning, lethary, shortness of breath, and overall not feeling well) that I have it. Not the case currently, a former doctor wanted me to have regular monthly, bi-monthly, or weekly vitamin B12 shots a few years back. (I had maybe two, but felt no relief whatsoever after both injections). If you think I have a B12 deficiency, would you recommend that I supplement sublingually with methylcobalamin. If so, with how much, and, do you recommend any particular brands? And, being a water soluble vitamin, is it possible to get too much vitamin B12?
Chris Kresser says
Urinary methylmalonic acid, along with serum B12, are the best ways to determine B12 deficiency.
Veronica says
Thank you Chris for getting back to me about this.
Do you know of any laboratory company I could order such tests from? Due to financial reasons, I’m not currently under the care of a doctor.
Also, can a vitamin B12 deficiency cause hypothyroidism and gluten intolerance? It was thought at one time that I was hypothyroid (really, its just reverse T3 dominance and adrenal fatigue syndrome) as well as anemic. However, I am gluten-sensitive.
Veronica
Chris Kresser says
You can check directlabs.com and privatemdlabs.com. You can order blood tests directly from them.
Annie says
Hi, I was found to have a b12 of 160. I have major fatigue issues, dizziness, migraines and sensitive eyes dating back many years. I had test dose of hydroxy – b12 plus 5 full shots every two to three days. I was so hoping to feel a lot better but actually a lot of things got worse. I had numbness and tingling most of night after first full shot, plus constant thrist and weeing which settled. I had had an eye twitch in one eye the whole time I have been getting the shots and initially was even tireder. After 3rd shot I found I am now more alert, when I wake in morning I feel awake within 5 mins rather than 45 and I have stayed up later without nodding off. But still have symptoms.
Is this normal? Would I be best trying methylcobalamin? Friend of mine had that and said big improvement quickly . Are 3 monthly injections ok from now?
Leann Warford says
I had bloodwork with B12 deficiency 2 months ago but doctor didn’t give recommendation. I take a B12 daily. 2 days ago went and had bloodwork. My B12 level is 21. Haven’t spoken with this doctor yet just got blood levels back from office. Got me pretty worried. Just checking around different websites over the weekend so I can get all worked up!!!!
Elizabeth Skaggs says
I was tested about 5 years ago and my B12 level was in the 200’s. I was recently retested and it is not at 388. I has gone up, but I still have many of the symptoms and I also have several family members who are being treated with the deficiency. However, my doctor won’t give me the shots because she said my levels are within the normal range. I am very frustrated, and sick and tired of being sick and tired. What should I do?
Chris Kresser says
There are better ways to treat it than injections now. Feel free to make an appt to discuss.
Mona says
I have read information on the internet in regards to Subacute Combined Degeneration of the Spinal Cord, which I was diagnosed with in Nov/10. Have posted here before but always searching for info regarding B12 deficiency and SCD since B12 def. diagnosis in Dec/09.
I would like to know if Chris or anyone has any info to share on SCD.
Thanks!
Helene says
Please consider a problem with the MTHFR genes. I have problems with the B12 also, have pernicous anemia. My big problem is methylation which can cause all sorts of problems, including B12 problems and pernicious anemia, ammonia in the brain which causes foggy thinking, Trying to avoid food with sulfur. There are doctors who specialize in methylation treatments. You can get tested for these problems.
Jan says
TO Jacque: I am so sorry, it is probably my browser but for some reason, I cannot get to your question and or response wuthout a big search so I am going to respond at the bottom, I hope that you see this.
I think that the most frustrating thing about all this are the Doctors. IMO, your B12 was not very high at all for having taken weekly injections for ten weeks. Most would have been over a thousand and you cannot overdose. Your symptoms going away was the key as well. You know, maybe another Dr. is in order. At first I wanted to say take a supplement on your own, and that is good but, you need to find out why, like me, your B12 is so low and your body is not holding onto it, processing it properly. I am very frustrated, just like you. I have a platter full of illnesses right now and it is a matter of picking which one I would like to take care of. Hmmmm, brain tumor, CIDP, B12,,,Hmmm…But then again, could some of my symptoms be worse due to my B12? This is a puzzling stew and I just wish that I had a doctor who was on board with it all. My great doctor who started this rolling for me, found the ignored issue, returned to Lebanon to take care of her mother, who has MS.
Jan says
I have one more question. My methyl. acid is ok, no problems there. Is it ok for my shots to be the C ones, cannot spell that, instead of the M ones? I put that I did 1000 ml, but of course, it is whatever that is, mcg, or whatever. And, I will get the subling. Methy. B!2, but unfortunately as well, I am struggling to even get B12 for shots here for some reason. My pharmacist cannot get it, says that there is a shortage countrywide. Sounds like a CVS issue to me, but whatever, anyone else have this issue? I am lucky to GET any, according to him.
patineuse says
had blood test for b12 in September having been off work for a year with “depression”- fatigue, dizzziness, breathlessness, throbbing feet and digestive problems. Blood test was 160 on 190- 900 lab range . Doctor told me to add back fish to my vege diet and have fortified breakfast cereal. I saw a dietican privately and she thinks its not the vege diet as I have so much cheese and milk ;she thinks it more than likely malabsorption. 3 months later blood test now 199. Doctors say Ok now. However I am still easily fatigued and soles of feet still throbbing. Im seriously thinking of supplementing even though the doctor and dietician seem against it
Jan says
Hi,
I think that you may want to educate yourself a tad on B12, where it is derived, etc. It is not available in nature but from red meat. So, you are not going to be able to change your diet as you are and fix this. But, you can supplement with B12 sublimigal and do it or shots. You don’t have to compromise your Vegitarian or Vegan lifestyle. However, you will have to supplement. Also, you may need other tests, the article that is associated with this blog is a great source of info. The fact that your symptoms are not better is your first red flag. The zone of ok, 190-900, is so off base, and if someone is exhibiting symptoms, a good Dr. would look at that as way low. Our own CDC has higher expectations according to age, I am turning 60 this month. So, our local lab standards of 200-900 are too low for me and in other countries, they expect in the area of 500 as a low. WIth all that said, I think another Dr.s opinion is in order maybe, but your own fatique and how bad you feel is a great yard stick.
Veronica says
Oh, it took about 6 months for me to bring up my b12 levels from 220-5** on 1000mcg/day.
Jan says
Wow….Sometimes, shots are just the best choice if you can get them, they do not have to go into the digestive tract. I have been at this almost a year and still struggling. It is tough. I wish that I could just find a Dr. who coud help. My family dr., who I really trust, said “I had an 80 yr old guy whose B12 was 80 and we got it up to blah blah and it was ok, etc and so on” and I was just floored. I have always trusted him in every way and this was the first time that I saw something that had a really big issue. An elderly person, who had NO symptoms, according to him, and myself, ne not feeling my feet, unable to fill out a flipping expense report (I had been HIS stock broker for years), there was a distinct difference. I had so much to learn. And, I still am not up to steam.
Veronica says
I have never been officially diagnosed by a doctor with b12 deficiency, but I diagnosed myself when I made the best of not having a family doctor and being able to look over my blood tests themselves since they let me have them for my own records until I could find one. 220 (units) was the measure. The acceptable range on the sheets was ~170-800. I didn’t get that, along with a battery of other things tested for, to find out nothing was wrong with me; obviously something was, even if what was tested didn’t show! So I looked up every test result online, trying to find anything. Lo and behold, in north america, according to wikipedia article then, like the lab said, my b12 was fine. But if I lived in Japan, I’d be getting shots for it at anything under 400units!
I eventually settled on taking 1000mcg/day orally of cyanocobalamin for awhile. It helped some of my issues, and my b12 levels are up in the 500 area now. (But again, no doctor told me about this, I had to see the results for myself.)
Eric, seeing as you have no choice but to take cyanocobalamin orally, you should take large oral doses of it you still think you are b12 deficient. I have also *just* been diagnosed as a celiac, which means I definitely had digestion issues when I was orally supplementing with cyanocobalamin, and it was still absorbed passively through my damaged intestines, just like I thought it would. Yes, taking a larger dose is necessary when using something that has reduced absorption.
Eric says
Hi,
I’ve been diagnosed with b12 deffiency since im 14, now 23. My doctor always recomended injection of once a month 1000mcg.
I see now this is most likelly not enough. Im now currently in Thailand for 1 year and all they have is the cyanocobalamin version(which also was prescribed in canada), I don’t have access to the other. Will this type suffice for now? I see that it is less effective, but would a higher dose work or am I out of luck this I get back to canada?
Jan says
Chris, yes, thank you for responding. My neuro, fortunately, was very up to date on B12 and left no stone unturned. I went through your article and this site with a fine toothed comb and made sure I was checked for everything, and as to the numbness and tingling, had them rule out all metals and toxins as well. Unfortunately, that neuro was my MS Dr. and when that DX was disproved, and CIDP was found, I was sent to a different clinic at Wake Forest where this neuro specializes in neuropathy. His answer to this drop was to augment with under the tongue B12. Fine. Maybe that will keep me more steady but my thing is why. Why is it so low and why am I having so much trouble. What Dr. would specialize in this? Would it be a hematologist? or something else. I have horrible bowel issues, being told that it is most likely permanent nerve damage from the CIDP and misdx. My lumbar punch was 123 for protien. To further complicate this, I have a brain tumor in the mid brain, what is believed to be a pilocytic astrocytoma.
Chris Kresser says
Yes, a hematologist – but find a good one. 10% of people with pernicious anemia don’t test positive for the antibodies. It’s entirely possible that B12 deficiency is not the main issue here, although it seems primary.
Jan says
Okay, I will. Before I do, understanding that I truly have had every single thing you recommend tested and all is ok, I have lost most of the feeling in my rt foot, a lot of it in my left. Hands are going numb and tingle but are much worse after IVIG treatment, neuro says it is most likely due to nerve sheath stimulation (even though they were not so before last treatment, nor before any treatments, the tingling in hands; IVIG seems to cause it). I have insane gastro pain and issues up to passing blood only w 2 10 day hosp stays, one ischemic colitis. No one cares to find out why, ischemic does not happen for no reason. So with pernacious, would my b12 not have gone much lower than 150? My concern is why will it not stay at a decent level? No Dr. seems to share this, it is almost like, “get over it, you are over 200, take your shot and move on”. I do not share that feeling, I am more like “If I stop the shot, I feel certain I would drop like a stone down to nothing if with them I am dropping in two weeks from 1500 to 497.” Is it unreasonable to be concerned? Am I making a mountain out of a mole hill? Some things, like the brain tumor, I cannot change, and the CIDP, as the EMG tests have proved out to be absolute, as well. But, how much of my symptomology are due to CIDP, B12 and is it possible I do still have MS? I am truly in need of Dr. House.
Jan says
CHRIS
One other thing, the risk mgmt team at the clinic, as this appears to be a misdx, were informed by the MS dr. who replaced the one who left and found the B12 prob, that the former dr. had monitored it and ignored it, and she felt it was possibly the root of all the problems, they are not recognizing this issue. They are maintaining that at 200, I was fine. I am so over our guidelines affecting us in America and allowing Dr.s to actually commit malpractice if they so choose. I lost my career etc over all this. Would I have not done so if he had treated me? I will never know. I have permanent damage now. From what? I do not know and the complications in my case are staggering. I just wish that I knew where to turn.
Jan says
Hi Guys
I need input, again. I will try not to be long so as not to be ignored. I know it is laborous to read.
I had low B12, neuro ignored it, misdxed me w MS, watched it drop for four years. At 150, he left clinic, new Dr. caught it, began treatment, but she checked all the things we discuss here, the methyl things, But, even after a struggle to get it up to 1500, and it took a lot of muscle shots, had to stay at bi monthly for a long time, when I am ready for a new shot, at the two week mark, I am back down to 400, from 1500.
Any comments on this? I am injuecting 1ml IM every two weeks. I have CIDP, have to take treatments of IVIG infusions every two weeks now also, HATE THEM, or I cannot walk. These should not affect my B12. CHRIS, any comments>
Jan
Chris Kresser says
Have you had your anti-parietal cell antibodies tested? If you have pernicious anemia, addressing the immune dysregulation is key.
Helene says
Jen,
I have pernicious anemia and do not absorb cyanocobalamin or plain folic acid. I need a form of both that are already broken down and my body can absorb it. I take Folapro and methylcobalamin. My levels of B12 always showed normal but my body did not use it properly. Found out too late and have many problems now. But the methylcobalamin and folapro made a different, you might want to check this with your doctor.
Jen says
Helene
thanks for your reply, I do not see my neurologist now until June will see what he says then. What makes me laugh is that I am under Neurology hospital in London and have had to do research into this myself to get anywhere. I know that my epilepsy drugs deplete my b12 and folate levels but will look into the information you suggested. I have read the book could it be a b12 and suggested to my gp to have a look at it, he was very interested but admitted that he didnt know much about b12 and that my hospital should know more about it. If you near London go to St Thomas Hospital in London for active b12 test, before I had this my gp was not interested in my results said they were normal. Will do a bit more research into your suggestions thank you.
Cate says
Hi Jen,
I am in London and am going to ask for my GP to refer me to Tommy’s for the active B12 test. Have been dx with fibromyalgia and other things. Have only recently started reading up on B12 deficiency. This is a great site.
Jen says
Cate
The test is worth getting done it may cost 15 or 20 pound but no one asked me for payment was told bill would be sent to me, but when I saw my gp he said that because I had a letter from my gp giving permission for the test that it was unlikely that I would be billed and the nhs would pay for it. My gp was very suprised with the results my normal test showed 252 and active showed borderline. I am just taking tablets at moment as my gp said he didnt want to just flood my body with injections. Good luck with test it may finaly get you some proper results.
Cate says
Hi Jen,
Did you just take a letter from your GP to the phlebotomy dept. at Tommy’s or did you have to make an appointment? Were you tested for anything else there at the same time?
Thanks.
Jen says
Hi Cate
I phoned up the hospital to let them know I was coming in for the test, click on the link I have added think it Robert you need to speak to let them know day you coming in for test. You go to get blood test done then have to go to the lab dept with the blood sample. Just handed in letter of permission from my gp for the test with sample. Robert wasnt there when I turned up so person I spoke to first said we dont do this test so I showed them the web page from my iphone and they took sample. My gp got results back within 7-10 days which was borderline hope this link helps. Also look on pernicious anaemia website which shows few other people who have gone for the test.
http://www.gsts.com/new-tests.html
Jen says
I have been ill for last 6 years with undiagnosed neurological problems. I have epilepsy and had surgery for that in 1996. I had a temporal lobectomy and had part hippocampus removed. I have been on epilepsy drugs for 27 years and am currently taking tegretol and keppra. I have had nerve pain for about 10 years but it was only about 5 years ago I felt remainder of left hippocampus swelling and then shrinking when I was given steroids for asthma. Took me about 8 months after before I got taken seriously and had 1st mri which showed sclerosis of remainder of left hippocampus. I have had 2nd mri scan about 2 years later, then nerve conduction somatosensory evoked potentials and emg test last year which came back normal. I have nerve pain all over which varies from day to day and can be anything from tingling to stabbing pains I have been prescribed lyrica for this. When this started I had megaloblastic anaemia I had already been taking 5mg of folic for about 18 months as I was planning on becoming pregnant because of epilepsy drugs. I have recently had blood tests which showed elevated mcv and mch which was ignored as follow up test showed normal. 6 weeks ago I saw a different gp who said my folic acid leves where low but I refused to take it as my b12 was 252. I asked my GP for a letter to have an active b12 test from St Thomas’ Hospital in London which he agreed to. This has just shown my b12 levels are borderline and he has prescribed me cyanocobalamin 50mcg 1 twice a day and folic acid. A text book I have for epilepsy says hippocampal sclerosis can be caused by a b12 difficiancy. Is this the best drug to take or should I try to get something different. Is it more likely epilepsy or a different neuro condition like MS as last time I saw my consultant he said there got to be something causing it it a symptom not a diagnosis.
CFS says
I did post yesterday but can’t see my comment. I wanted to know if having low b12 is a risk factor for deep vein thrombosis. I currently have a DVT completely out of the blue despite not having risk factors for it. My b12 is 160 and I have my repeat blood test to check this level tomorrow. I can’t see any reason for this blood clot to have former and I also can’t see any logic behind my b12 being low (take no meds other than the pill – now switched to mini pill), eat a varied diet with plenty of meat and animal products in. I’m 29 years old, had fatigue for 15 years.
cfs says
Hi Chris my b12 level 160. It is being rechecked in a couple of Weeks. Last week I developed a dvt out of the blue. Im 29 no real risk factors. Does low b12 cause increased risk? Im on warfarin for six mths now and had Weeks worth of Celexane.
Lucia says
So, an update… and Chris – a question – PLEASE ADVICE!!!
Talked to my PCP and he changed his mind about me having a deficiency :/
Even though back in 2007 I ended up in the hospital having an attack of nystagmus & ataxia due to low B12 level of 110, and was then put on monthly B12 injections for awhile. Even though I had a metabolic imbalance 2 years ago when my PCP tried to wane me out-of B12 injections. And even though back in October-November 2011 they did new blood tests and my B12 dropped from 475 to 261 within 7-weeks of me not taking a monthly B12 shot, my PCP called me yesterday and told me that those numbers *475-261* are still within “normal” B12 range, and that I was not allowed to get more B12 monthly injections until maybe March (or 3 1/2 months later from my last shot). When I told him that in-the past I had not done well without my shots and was concerned about the over-200 drop the previous month, he said that he had a hematologist look into all my recent blood-tests, and that they did-not think that I had a deficiency. That I should just make an appointment for March 2012 and they would do a blood test and check my B12 then and see if I needed a shot then or not.
I am utterly confused, and don’t know what to do.
I can supplement myself by taking over-the-counter Metholcobalamin as I’ve been doing lately, but I’m disturbed by this development -I mean, really?!? With the last blood-test and a B12 of 261, I am now as my PCP says within “normal range” even though my B12 dropped over 200 units without a monthly shot within weeks? Do I stop taking the sublingual B12 and see really “what happens” if I just rely on my general protein/B12 intake?
I am confused, and don’t know if I should trust my PCP, or if I should change doctors. I DO NOT want to go through another metabolic imbalance or nystagmus/ataxia attack.
Is there any logic into what my PCP thinks now? Or a potential logic behind it that I do-not know? Should I play along and see what happens?
Please advice!!!
MLS says
Julie
Although locked in brain sounds like my strokes it appears that is not the case according to my neurologist. This is why I am searching for all other options. My neurologist is the one that has said that it is a very distinct possibility that the neurological problems could come from B12 deficiency even though my number was 234. He said that some people can have neurological problems if their number gets below 400. Upon reading more from Dr. Kresser, I realize that maybe something beside an absorption problem is causing this. I also take acid suppressants on a daily basis and have taken Metformin in the past. I am on my way to the doctor with more information and hopefully we can work something out. My question is if in fact the acid suppressants are the culprits would it hurt to get the injections to get me back to normal?
Lisa says
Love your blogs. I guess I need to appreciate my health provider better as I was diagnosed B12 deficient without any push on my part and given a prescription for 1000 mcg methylcobalamin B12 sublingual daily. Trouble is life got busy and I got lazy about taking it. You have all reminded me of the importance of this as I have many health issues.
jillian says
hi there
i was diagnosed with a vit b12 deficiency in september 2011. i am 29 and felt so unwell. fortunately i was started weekly injections then went onto monthly and have my last monthly one in 2 weeks then go onto the 3 montly injections. i am feeling so much better but think i will always have some lasting effects from it. i blame myself for the condition as i have had bulemia for over 10 years. i haven’t made myself sick since i found out so i suppose every cloud.
My question is that me and my husband want to start trying for another baby. should i wait a certain time and is there anything specific that i should be doing? scared of neural tube defects etc
thankyou
jillian
Jacko says
I’d like to point something out, i’m sure you didn’t mean to say it that way, but its incorrect.
All forms of B12 are analogues of which there are two types, active B12 and inactive B12. Inactive B12 analogue is refered to as pseudo B12 which is not biologically active but chemically looks like B12. Vitamin B12 is composed of “vitamers”. A vitamer of a vitamin is a chemical substance that shows vitamin activity.
All B12 is a cobamide, or more accurately a cobalamin. The term ‘B12’ refers to a group of vitamin compounds known as cobalamins. The B12 group of cobalamins are a member of a group of corrinoids which are a group of compounds based on the skeleton of corrin, thus B12 is sometimes refered to as a Corrinoid. The cobalamins are the best known members of the corrinoids group, thus B12 is also refered to as cobalamin. A cobalamin is a cobalt-containing complex common to all members of the B12 group. The term ‘Vitamin B12’ ,one of eight B vitamins, actually correctly refers to an entire class of water soluble coenzyme chemicals with B12 biological activity, and not specific B12 chemicals for which it is often applied incorrectly. When we say ‘cobamide’ its the singular form in reference to a specific chemical, when we say cobalamin its also singular but in reference to the group.
Both active and inactive analogues look chemically similar to each other, the difference is that active analogues are biologically active and inactive analogues aren’t.
Spirulina is said to contain Cyanocobalamin. This is frequently taken as a sign that Vitamin B12 is present, and indeed Cyanocobalamin is often called vitamin B12. However, when it comes to spirulina, these companies have played a little trick. Normally in industry Cyanocobalamin is used in fortified foods and vitamin supplements so its become common term usage to relate Cyanocobalamin to Vitamin B12 in a broad sense because its the most common analogue used for vitamin supplements so no one ever paid attention that there can also be a Cyanocobalamin that really isn’t Cyanocobalamin but rather an inactive analogue, a counterpart if you will, that will show up in tests because its chemically similar. It really doesn’t show up as Cyanocobalamin directly, actually the spirulina companies have done a little creative science – they have guessed. What happens is they have tested spirulina, the inactive analogue shows up as B12 because its chemically similar, and because they can’t find another analogue indication in the spirulina, by process of elimination they claim it to be Cyanocobalamin. In reality, Cyanocobalamin is only produced in the presence of cyanide and another B12 analogue called Hydroxocobalamin of which there is none in spirulina and the amounts of trace cyanide in any spirulina growth medium is so low that even if there was Hydroxocobalamin in the spirulina the amount of Cyanocobalamin produced would quickly be overwhelmed by its inactive counterpart. There is no way to add enough cyanide to algae growth medium even if Hydroxocobalamin were present, without actually poisioning the entire algae and thus producing poison products so no one wants to do that. If Hydroxocobalamin is not present the only “Cyanocobalamin” that can be produce is an inactive analogue. So, all this together conpires to produce only an inactive analogue that is refered to as ‘pseudovitamin B12’. A pseudovitamin is one that looks chemically like a vitamin but lacks capability (efficacy) to be bioavailable in the human body because its biologically inactive. The pseudovitamin B12 in spirulina does nothing useful in the human body.
As a side note: Its often claimed that (real) Cyanocobalamin is somehow bad. Its not actually bad. Its true that real Cyanocobalamin is not directly biologically active. Cyanocobalamin is not useful by its self in the human body (or that of any animal) and must be converted in the body to Methylcobalamin and Adenosylcobalamin active forms. The role that real Cyanocobalamin fills is that its quickly produced, can be stabalized more readily and cheaply, and can be made in large quanity more cheaply then the other forms, and thats why its used in fortified foods and supplements. Its not really less effective for general health substance delivery, its just a little more less efficient. However, its still a form of B12 analogue.
Freddd says
Jacko,
Cyanocobalmin is the worst possible form of cobalamin that has any activity. It is the offficial “B12” only becasue of a lab mistake in 1947-48 in identifying liver extract (55% adb12, 40% mb12, 5% misc). Most cyanob12 is excreted by the kidneys and is ther bodies preferred excretion form made from neutralizing cyanide from any source with hydroxcbl, mb12 and/or adb12. Hydroxcbl is several times more effective than cyanob12. Mb12/adb12 is 100-10,000 times more effective than cyanocblhydroxcbl. People can develope fatal deficiencies of b12 wile taking cyanocbl and/or hydroxcbl. They are both largely inactive and terrible.
MLS says
I am a 62-year-old woman who some months ago started having symptoms that I could not understand. I would start talking and the words coming out of my mouth were not words at all. This happened on two occasions with no other symptoms at that time. In the meantime, I started having word finding difficulty, depression, lightheadedness and nausea. My PCP sent me to a neurologist who put me through some testing and diagnosed me as having had some strokes. They did not feel that the other symptoms were caused from the strokes as these were mini strokes. The did find that my B12 was 234 with a range of 200 to 900. The doctor ordered another test to see if I have an absorption problem, which according to my PCP came back within the normal range. It came back at 117, ranges I do not know. Also the B12 that my doctor ran two weeks after the original B12 by the neurologist came back at 186. My PCP’s office informed me that on their ranges this was normal because it was not under 180. What are the ranges? Being as the PCP will not give me injections as my levels are in the “normal range”, how much over-the-counter B12 should I take as I do not want to have permanent neurological damage from all this. I am really getting worried as I have a hard time carrying on conversations as the words are locked in my brain. Thanks for any help that you may be able to give me.
Julee Ellison says
MLS … if you read everything here, you’ll find there is no evidence that taking B12 can cause any problems. I take the LifeExtension Methyl-Cobalamin 5mg once each morning. The words locked in your brain sound totally related to the mini strokes, for sure.
Julee Ellison says
Chris, can you help me understand something please. I just had a full blood panel, including B12, VAP, metabolic panel, CBC, etc. From the paperwork —> Vitamin B12: 954 (200-1100 pg/mL). So, if my number is 954, that might sound high compared to a lot of other people here. However, based on other numbers in my test results, my doc said I need to up my intake of B12. Do you know why this would be? The only numbers I see that are out of line (and I don’t know what they mean) are: Creatinine: 0.55 low, Hematocrit: 45.2 high, MCV: 101.9 high, MCH: 34.3 high. Do these numbers mean anything in connection to needing to increase my B12?
Just like the previous poster, I am so tired of being tired, with no help from my PCP … even though he is a good doc. The muscle fatigue is making me crazy. Thanks for any help you can offer. Jules
Chris Kresser says
He’s referring to the elevated MCV and MCH, which is often indicative of B12 deficiency. But it can also suggest folate or B6 deficiency, hypothyroidism and a number of other conditions. Another possibility is that you have a genetic mutation called MTHFR, which decreases the ability of your body to properly convert the inactive form of B12 to the active form. A number of possibilities here…
Julee Ellison says
Thanks for the quick reply. So, if it were you, would you ask him to do any other tests … that could lead to me finding out why the muscle fatigue, etc? Or, are the numbers not big enough to warrant worry?
Off topic, I hope you had a wonderful holiday!
Chris Kresser says
I would do more testing.
Julee Ellison says
Thanks Chris!!
TDS says
I’ve been reading this entire thread with interest as I figure out what step I need to take. I’m 44 and a year ago, I was feeling miserable (very fatigued, short term memory loss,weigh gain (I’m active and thin), cold, etc.). All the Dr’s were brushing me off and basically my Primary Dr referred me to a Biomedical kind of throwing her arms up not sure what to do with me. Frustrated I went to this Dr. even though I had to pay out of pocket because I was so desperate.
I did receive some useful information, my B12 was at 224, D3 was at 30, thyroid was just above acceptable for hypo. To me this Dr was a quack so took my results back to my Dr. I was put on B12 shots, but had a reaction and had to stop after about 6 of them. My levels were tested and were at about 574 Dr said all was good. I’ve had them tested about every three months recently because even on thyroid meds, I’m still unusually fatigued. Most recent one was 342 (it seems to be falling about 100 every 3-6 months). Thyroid Dr said that number was fine, but it is NOT fine for me. I’m back to the unusual fatigue and the short term memory loss (I know what I want to say, but can’t think of the word).
Who do I see that will take me seriously and figure out why I do not absorb B12? I’m not a vegan, I’m in great health otherwise, don’t take acid meds. I’m too young to feel so tired, that it exhausts me just to think about what I need to do.
Helene says
I have pernicous anemia due to problems with absorption of my B12. I now take B12 injections and 5-methyl folic acid. I have been told by my doctor that my B12 problems are due to methylation problems. You can read about it on Dr. Amy Yasko’s site. Dr. Yasko is a researcher and much of what she talks about is directed for children but also applies to adults.
Clare says
Hi I’ve been reading these posts with a lot of interest. I was diagnoised with b12 deficiency four years ago and given oral b12 my levels increased and tingling and vibratingfeelings got much better my levels were 158. My gp took me off b12 twice as my levels were high but my symptoms came back. I then relocated and changed my gp and my levels were 258 the gp told me they were normal and refused to treat me. I told him that my levels were158 at one point so he gave me an injection this helped the symptoms but they did not go like they had previously so I asked for more frequently injections so I’m on one every two months. The go told me the symptoms were not due to by b12 level ad they were normal at 377 I still have symptoms the gp referred me for verve conductive tests which were 100 per cent normal and now I’m referred to a neurologist and I’m worried it’s ms but my symptoms were ok when I was on 50 mcg tablet per day. The GP states at a level of 258/377 tingling would not be caused by lack of b12 i would like your opinion Chris.
CFS says
Thank you for swift reply. Ive been told by way of letter today they need to repeat b12 test in one mths time so hopefully they arent going to completely dismiss it.
CFS says
Ok I first got ill fatigue and dizzyiness about aged 14 I was also getting a lot of acid reflux and was treated for helicobacter pylori. Few years on I got a lot worse would be so tired I felt drugged, achy, sensitive eyes and mouth ulcers. I got worse after first child at 22 (just walking in park left be breathless) and worse again after second child a few years later. I breastfed too and felt slightly better whilst breastfeeding but very bad when stopped.
I was diagnosed with CFS. If I walk up stairs I am breathless and legs cramp and ache. I always feel tired. I am dizzy and if I swing on child’s swing even just for 20 seconds I feel disoreinatated, sometimes turning round quickly does this too. I can’t strighten fingers on right hand and get itchy tongue and red patches on roof of mouth. My eyes are v sensitive, flashing lights can bring on visual migraines. My nails have had deep ridges vertical and split along these ridges since age 15. I have no nail moons and pale yellowlish skin.
I finally got Dr to check my b12, it came back at 160. I was told this is satisfactory. My full blood count is within normal limits. Dr just said I need to try anti depressants. I am reluctant to.
I work part time and always without fail exercise slowly each day. No matter how much I do I do not improve. If I try to exercise properly say dancing I get dizzy and my vision starts to blur. I used to get sinus infections but have a daily sinus pain in left cheek. Had CT of sinus and they said it shouldn’t hurt that much. I also have irratable bladder and get cold easily. I’m 29 now and feel like an old woman.
Chris Kresser says
A B12 of 160 is absolutely not “satisfactory”. It’s well below the low end of the lab range, which is 211, and it is documented clearly in the scientific literature that even levels between 211-450 are associated with neurological damage. I’d strongly advise you to find another doctor as soon as possible and begin treatment for B12 deficiency. Your doctor is either grossly misinformed or negligent.
ariel says
Hello,
I took the blood test 3 weeks ago and I have 250 of vitamin B. Doctor gave me vitamin B12 and another vitamin b complex. I took both and I started to have a terrible headache, I had in somnia and very sensitive to the light, also a bright yellow pi. In this case that vitamin b makes me feel so bad how can I do??? is there any o ther way to absor vitamin B without those symptoms??? Thank you!!!!!
Lorraine says
Hi Chris,
I get injected with B12 due to pernicious anemia and I read on here that they say in France that that can give higher odds of cancer. What is your understanding of these findings?
Also what is the relationship with B12 deficiency and carcinoid tumors?
I read they can sit for up to nine years undetected in three different sites in the gut and are deadly! I also saw something about 5-htp which people take as a natural anti-depressant being present in some of these tumors. Please let us know more on our risks and what to do to check!!!
Thanks!
Jan says
Thank you for reminding me about the eyes straight forward. Animals of prey do have eyes like that while animals preyed upon have them on the side. The things provided are old, 2003, and back in the 90’s and thank you for helping put this into perspective. Chris has provided this forum for us to share, learn and grow. Not fight, confuse, rant and bring speculative info. I have never gotten the answer to what plant B12 is derived from as there is none. I do not believe that there is a safe way to get it from bacteria. Meat does not provide us B12 by giving us bacteria, as was said. I am comfortable with Chris’ sources and not with the others.
So, moving on, I am still giving myself injections and I too, have neurological issues and frustration with getting my CIDP under control. I have a fear that I will just slowing lose all feeling in my extremities.
Does anyone on here have a diagnosis of CIDP as well as B12 issues?
Jan says
One other thing. While I am not sure taking B12 is good for every one, it will not harm anyone. That is key. And to phrase meat as corpses, come on. You are making vegans appear less on this site Corvus, not making a good impression. I have seen more ppl die from eating improperly grown vegetables than meat, and that is a fact. If you want to march on Hormel or wherever, fine. That is not here. We are ppl who came here to find out what Chris had to say. If we don’t like it we leave. It is his site. Simple. We can share experience, other ideas, but you are not doing that.
Sharon says
Corvus
Cool u know so much and have opinions. I’m not evaluating them nor following the thread all that much. But have you looked at the recent NYT article re: B12? I’ve not read comments there; perhaps you could influence more folks on the national if not international audience over there. That way you can leave chriskresser.com for those who seek Chris’ wisdom and carry on elsewhere.
Corvus says
Sorry, I didn’t know this was an exclusive club of people who believe everything without questions or double checking any of the information. I actually got to his site via something on chemical imbalances that I agreed with a lot. Then I saw this stuff and he lost a lot of credibility, because I, you know, questioned him instead of automatically believing it. Perhaps you’re right, this isn’t the place for someone like me. See you all.
Sharon says
Only if you think it exclusive. I think you’ve done more than “question”. And that’s great. Good luck and I hope you get the help you are seeking. You seem like a great person; energetic and selfless.
Jan says
Agreed. This is not a site for activism. That is the point. We are here sharing what we are doing not bashing vegans, or meat eaters or any other thing. It is getting old. Please find another place to rant and allow us to get what we need. I will move forward with my delicious steak corpse and be done with it. You can have your soy burger. Personally, I do not care what you eat, why do you insist on caring what I eat? Leave it Corvus and move it. Please. This is not a rant site.
Elisabeth says
Corvus, are your sure about your theory of man being a non-meat-eater?
We don´t have the GI-tract like the animals we eat, eg, our guts are not shaoed for all that granis and cellulosa.
By the way, ever looked att our eyes? sitting in the front, looking stright forward…
That´s the eyes of a hunter, not of the game.
Lucia says
One thing is to question information, something else is to attack information and the people providing it.
Jan says
I do not know why I allow you to draw me in but I have to respond to this.
Corvus, this blog/site is sponsored by Chris Kesser to educate ppl who areB12 deficient and share the in depth study that he has conducted. It is not to necessarily bring ten year old study info done on ten vegans as fact to fight. No one is accusing vegans of being inferior humans. B12 does not exist in plant life, period. As for your assertion it does in bacteria, uh no thanks. We were born with teeth to tear meat and that is a fact. The balance in nature, were mankind to completely stop eating meat, would impact the world environment horrifically. Deer, if not hunted, cannot find enough food. There is a cycle of life. YOU do not have to eat meat but back off. This site is not dedicated to the belittlement of vegans or vegetarians, but neither is it a forum for them to rant.
Chris uses material that is current from reliable sources. As a person who enjoys this site would you please stop. Please share your experiences and defending your choices and culture. That is not what this site is for. You are not bringing any help or positive energy to us and it is upsetting.
As for celiac disease, can it not be detected fairly easily from the area at the beginning of the intestinal tract? One thing is for certain, one size does not fit all. I am learning that. Also, I am using an iPad so overlook spelling and grammar. It changes things randomly and I cannot review them properly.
Corvus says
Actually, we are born with the teeth of omnivores, closer to the herbivore side of things. All herbivores have canine teeth you speak of anyways as well. Ever look at the teeth of the gorilla? http://www.ereads.com/uploaded_images/gorilla.jpg They eat all plants. And our teeth are very flat compared to theirs. I don’t blame you for bringing up that point as it is one of the most popular points that people are taught in school, the days of the “4 food groups” and all that- one of them being cow milk. What if it was breast milk? Wouldn’t that be weird? Our culture consumes baby cow food in drones and acts like it is natural. It’s killing us and the planet. And other natural arguments I am sure you know, don’t fit much into this http://www.willowcreekfoods.com/images/Factory%20Cow%20Herd.jpg which is what about 99% of farms look like (that have cows). Ever see a pig outside when you’re driving through a rural area? That’s because they’re all inside in gestation crates and such. Every time you hear about a contaminated plant with e coli, that’s livestock runoff (ie shite) running into the plant and water systems. And animal farming, like I said previously, uses almost all of the food and water in the world and is the top cause of climate change.
So, do you really think stopping eating animals would HURT the environement? You still have not explained how….
As for deer, google deer farming. Deer are over populated in part because of HUMANS over urbanizing into their habitats, building new roads before the deer can find new habitats from the last time humans mowed down their forest homes. And there is big money in deer breeding to keep those populations up, to continue to justify killing animals for sport first and food second. Natural predators being hunted out of existence by hunters and animal farmers is also responsible for animal overpopulation, so again, if humans stopped eating animals, the whole environment would benefit.
Meat is a corpse. What do you think it is? Flesh that grows on a tree? Our culture has referred to dead animals as “meat” so people can have an easier time torturing and killing them without guilt. Do you like cats? Doggies? Same as pigs and cows and chickens. Only some species are labeled meat so people can kill them. What if this article said you needed to eat dogs to keep your b12 up? Would you? QUESTION THINGS. I just call eating animal corpses what it is- eating the flesh of animals who were killed by humans. Dead animals. Corpses. I’m just being realistic and not living in a fantasy world where corpses are reduced to “meat”.
But that wasn’t why I am here. I was here to address the passive shots at veganism by the author, whether you see them or not, and his convenient use of 1% of the information about diet to make his claims. As much as you seem to be annoyed with me bringing “negative” energy (eg more truth to the story) I was glad to have this exchange with you. Thank you for giving me the opportunity to share this information, for our sake, for the animals’ sake, for the planet’s sake.
Lucia says
Yow know? While you might have some decent points in your matter-of-fact arguments, your demeanor and closing self-righteous sentence: “…..Thank you for giving me the opportunity to share this information, for our sake, for the animals’ sake, for the planet’s sake….” just makes all your entire spill bullshit.
Upon re-reading the original post by the author of this blog (Chris), I don’t know where you see that he was taking shots at vegetarians/vegans with this article. Rather, he stated true-facts that: YES, if you are a vegetarian or vegan, you are AT RISK of low b12 levels. And the true-fact that YES the ***most direct-efficient ways to maintain healthy b12 levels*** are by not being vegetarian/vegan (and consuming animal products), OR by taking supplemental b12 in your diet. SIMPLE AS THAT. Nowhere it tells you that being vegetarian/vegan is a bad thing, only that you should do it responsibly towards your own health.
While I’m omnivore, I’m someone who has been suffering b12-deficiency for over a decade now due to health/genetical issues, and can tell you by-experience that low b12 really f’s you up if not known and controlled. From depression, chemical imbalances, neurological damage, low energy, spending a week in the freaking hospital trying to figure out what is wrong with you, plus multiple doctors appointments after that, monthly b12 injections, etc…. it IS NOT a fun time to be b12 deficient, and something that I do not wish even to my worst enemy.
After all that happened to me, I’ve shared my experience to my friends/family as a word-of-caution. And yes, I’ve shared my experience specially to my friends/acquaintances who are vegetarian/vegan, knowing that they are at risk, all in the hope that they will not have to go through what I went to.
So, in short, THAT is in-itself the purpose of this article and subsequent comments: B12 deficiency is indeed a silent ailment/epidemic out there affecting many people. And so, take care of your health and your diet -whichever diet you chose to follow. And that YES, if you are vegetarian/vegan, make sure you are informed about b12 deficiency, and that you are at-risk of it -that is all.
Mona says
Thank you for sharing Lucia! (and to all who do on this site). Your third paragraph hits close to home for me.
Corvus says
Here you go http://www.pamrotella.com/health/b12.html
Chris Kresser says
Not a single credible study listed on that page. I’ve posted several, and just take a moment and search Pubmed and you’ll find that B12 deficiency is very common amongst vegans.
For example, this study showed that 50% of vegans are B12 deficient and would be expected to have a higher risk of developing clinical problems due to B12 deficiency. http://www.ncbi.nlm.nih.gov/pubmed/20648045
Corvus says
No response to the post that I made that was more that two words?
Corvus says
The latest data on the dietary intakes of vegans was just published last month.[1] The diets of about 100 vegans were recorded for a week and were found deficient in calcium, iodine and vitamin B12. Using the same standards, though, the standard American diet are deficient in 7 nutrients! The diet of your average American is not only also deficient in calcium and iodine, it’s deficient in vitamin C, vitamin E, fiber, folate, and magnesium as well.[2]
Not only does the American public have over twice as many nutritional deficiencies in their diets, vegans were shown to have higher intakes of 16 out of the 19 nutrients studied, includeing calcium. The vegans were getting more than enough protein on average and three times more vitamin C, three times more vitamin E, three times more fiber. Vegans got twice the folate, twice the magnesium, twice the copper, twice the manganese.
And of course the vegans had twice the fruit and vegetable intake and half the saturated fat intake, meeting the new 2003 World Health Organization guidelines for fat intake and weight control.[3] Almost 2/3 of Americans are overweight.[4] In contrast, only 11% of the vegans were overweight. Almost one in three Americans are obese.[4] Zero of the 98 vegans in this study were obese.
So when a meateater asks you “Where you get your B12?” You can counter with “Where do you get your vitamin C, vitamin E, fiber, folate, and magnesium? And while you’re at it, you can ask them how they keep their sodium, saturated fat, total fat and cholesterol intake under control (not to mention their weight).[5]
REFERENCES
[1] Results from the German Vegan Study. European Journal of Clinical Nutrition 57(August 2003):947.
[2] USDA. Food and Nutrient Intakes by Individuals in the United States, by Region, 1994-96.
[3] World Health Organization Technical Report Series 916. Diet, Nutrition and the Prevention of Chronic Diseases. 2003.
[4] Centers for Disease Control.
[5] Then you can finally answer their question and proudly say B12 fortified foods or B12 supplements Of course the fact that we’re seriously deficient in B12 should not be taken lightly. Evidence suggests that our low B12 intakes make be shaving literally years off of the lives of vegetarians and vegans, so make sure you get your B12!–I recommend ” Vitamin B12: Are You Getting It? ”
Source: http://www.veganmd.org/september2003.html
Jan says
Corvus
I don’t feel like I should apologize for eating meat. And, not all meat eaters are gulping down trans fats and junk, ok? Not all of us are calcium deficient, etc. But, B12 does not exist in vegetables, It is only available to humans who decide to eat a strictly vegan diet as a supplement. So, it is a fair question for someone to ask a vegan, but not for a vegan to ask a meat eater.
I am not sure why it feels that your posts are angry, or attacking, do you feel that you are being criticized for not eating meat? I hope not. That is a personal choice and I support your choice. I just don’t like to feel attacked for mine. Sorry. I am not B12 deficient because of my diet. I am not deficient in any other area, or for any other element or vitamin.
Thanks.
Jan says
Oh, and all my blood panels are spot on, as is my weight, etc. Just so you know.
Corvus says
I was just dispelling the myth that all vegans are nutrient deficient and that eating animals is the superior diet. Both diets require supplementation. The meat eating diet just requires a lot more. I think it is you who are feeling attacked by my post.
Jan says
Your posts are almost hostile toward meat eaters, and not all meat eaters need supplementation. I am curious about your stating that you get your B12 from plant or bacteria? Really, I have never known of any source for B12 outside of animal sources, or supplementation. What bacteria or plant do you use to provide B12 to yourself? My vitamin and blood panels are great, I only have an issue with B12. And, I am sick with a brain tumor and a disease called CIDP. I have reached a point where I just do not enjoy eating. End of story.
I do not feel attacked but I feel hostility from you, and it becomes uneasy after a bit. You seem to be challenging everything that Chris says, and personally, I trust his sources as well as some other solid sites offered. I am not into random sites that just come up with data.
I do not believe that meat eaters require a “lot more” supplements than vegans. Sorry. You are biased. And I do not think that all diets have to be supplemented. Sorry. I am not with you on that either. Many ppl do not require additional pills to be healthy.
I do not think that all vegans are nutrient deficient, but B12 is an issue for reasons cited.
Corvus says
If my post was hostile toward anyone it was the man using tiny bits of science and leaving out the rest to sell his paleo diet ideas and try to get people to believe that consuming animal corpses is good for you, while simultaneously trying to make it look like veganism is bad for you. Neither is true.
Many vegans don’t need supplementation either. As I said above, b12 comes from a bacteria, not from animal flesh. This bacteria can be found in nutritional yeast and other vegan foods. Taking a b12 supplement is just good for everyone regardless of diet. That is why you will see most people on this thread who have been b12 deficient saying they aren’t vegan.
Corpse eaters get so defensive when the dominant paradigm of eating tortured animals is questioned, when in fact, that questioning should be welcomed since most of the food grow and water depleted is due to feeding livestock, that animal agriculture is the number one cause of climate change (ahead of cars), and that animals suffer and die so people can eat their flesh. If we wanna talk about health, and what’s good for us, let’s talk about the big picture, not pick one random nutrient that people who don’t eat meat are sometimes conveniently deficient in.
I bet if this post was about meat eaters being deficient in nutrients and how they should stop eating animals, people would go nuts.
Rose says
People need to realise that it is gluten damage to the small intestine that causes malabsorption of B12. 80% of the immune system is in the small intestine so people who are gluten intolerant or have celiac disease are often ill with other diseases also and still don’t know in many cases that it is gluten that is underlying their problems. In our grandmother’s day, flour contained only 2% gluten. It now contains 55% gluten and most are eating way more bread, hamburgers, pastries etc than they ever have done before. There are millions of people who are gluten intolerant yet don’t have the slightest idea that they are. I can speak from experience here as I was 59 before it finally dawned on me that gluten was killing me. By then it had done so much damage to my small intestine that I have lactose intolerance, fructose malabsorption, histamine intolerance and salicylate sensitivity. My diet is extremely limited and however much I would like not to eat meat it is impossible as it is the only source of protein I can digest. Since learning that I am gluten intolerant I have researched it thoroughly. Anybody reading this who is genuinely concerned about good health should Google gluten intolerance and the diseases it causes. From the Celiac Disease centre of the University of Chicago comes the information that there are over 300 different diseases and symptoms caused by gluten. B12 malabsorption is just one of them. Gluten also attacks the brain causing any number of mental health problems, including depression, bipolar disease, ADHD………..the list is endless. It still blows me away to realise that billions of people are not even aware that it is gluten that causes the majority of illnesses.
Margaret says
I am a bit late responding to this, but I use a probiotic to provide my B12 and have excellent results — much better than using a sublingual B12. For years I supplemented with a nutritional yeast based B complex, but after reacting to a homeopathic remedy, my body could not longer absorb B12 from the supplement. Then I was on sublingual B12 with poor results, but it still kept me from totally losing it. If you do a little research, you will find that beneficial bacteria in the gut do produce B vitamins including B12.
dora says
Hi Margaret, do you mind sharing with me which probiotic you are taking, thank you.
AS for the animal vs plant debate. I would not be eating meat(for the sole reason of the treatment of animals) if I could digest anything else. Presently meat is the only food I am able to somewhat digest. I’m sick and tired of eating meat, and it breaks my heart how these animals are treated. I opt for cruelty free meat which is very expensive(unfortunately) . I’m not able to work because of my health…so I limit my meals to once a day. I tried a plant based diet and it almost killed me. 🙁 … If we choose to eat meat(for health reasons) then we need to make a conscience choice of going cruelty free. Many local farmers provide and treat their animals humanely. Or so is the case with the farmers I buy from. … if we all make this choice, factory farming will end!!! … ..anyhow. I do wish good health to everyone here.
Ania says
Corvus,
You are comparing nutritional deficiencies in vegans versus the Standard American Diet. The standard american diet does not take into account the quality of the food being eaten. It is too broad, and I’m sure there’s a big difference between meat eaters who get their meat from McDonalds (loaded with all kinds of who-knows-what by-products and chemicals) versus those who seek out pasture-raised cows and whole foods.
There’s also a difference between those who care about their nutrition, and those who load up on empty calories and sugar-laden junk. People who follow the Standard American Diet can be nutritionally deficient because of the empty calories in the form of junk food they consume. You cannot conclude from that study that meat causes deficiencies unless you test different kinds of meat eaters and find the same deficiency patterns. I would like to see a study done on the vitamin levels on SAD versus a clean Paleo diet that does not permit junk food/empty calories.
Corvus says
Hmmm, I looked at the vegetarians b12 studies you posted and they said they had lower levels but not that they were deficient. The vegan one did not have an abstract to read so I couldn’t read the results of that one. I am skeptical in your intention in writing this. Bacteria like nutritional yeast have alot of b12. Why did you leave that out of your article?
Before I was vegan, my iron levels were really low and all other nutrients were messed up. I have been vegan for 5 years and have never had a b12 deficiency. My tests have always been in fine range as have other vegans I know who have gotten b12 tests.
I do take a vegan multivitamin to be safe but I also did that before I was vegan. My b12 sources are all plant or bacterial and my levels are fine as are other people I know who have been tested, and their vegan kids. The vegan kids are all healthy, smart, cognitively functioning well, and growing great. I hear a lot from people that vegans are this or that but I never actually see it in real life. I do see a lot of illness from meat eating in real life quite often. And, from my research of studies published, I have found a lot more evidence that eating animals makes people sick than veganism. In fact, it is really hard to find studies that say veganism is bad for you, but very easy to find studies showing that eating animals is bad for you.
I’ve also read studies that say that vegans may be deficient in b12 or whatever, but when compared with animal eaters, the animal eaters are always deficient in a bunch of nutrients, not just one or two. So, rather than conveniently focusing on one nutrient (which may make it look like veganism is unhealthy), why not look at the whole system? Why not focus on a culture and system that subsidizes animal farming but not plant farming, therefore making eating animals an easier way to get some nutrition for some people, even if it does clog their arteries in the long run? Why not focus on the fact that a balanced vegan diet is good for you and food politics and accessibility in an animal corpse eating society probably play a huge role in any deficiency?
Sanda says
My mom’s B12 level is measuring the exact same number for two years in a row, 1107 pmol / l. I checked her results and they were done on different dates, not a mistake. She has PA; received monthly injections for a year, and then received four injections in one week in aug 2010.
My question: What does this indicate? Is it suspicious that the number didn’t change at all? Her GP doesn’t know what to make of it. Also, should she resume injections or supplements (she has various symptoms mentioned here)?
Thanks for the info, great site. Appreciate it,
Sanda
Jen says
I’ve rang my doctor (today) for my blood results and was told that i have boarderline B-12 deficiency. and got to see my doctor tuesday to find out more. I’m only 25 and got diganosed with Iron-deficiency anemia 2 months ago and now this, does anyone know if the 2 are related at all? I don’t have many of the symptoms of B-12 only the usual tiredness, headaches (which i asummed was down to the iron-deficiency…. I went to doctor to have a blood test for Coelics as i had symptoms for this and the B-12 showed up. Can mouth ulcers and loss of hair be a sign of B-12 then?
Tiffany says
I was diagnosed 2 days ago with a B12 deficiency. My level is at 63. I am 29 years old, have been eating paleo for several years now, and have been struggling with many symptoms for quite some time. Anxiety, panic, digestive issues, and fatigue to name a few. I am going to have the doctor test me for IF antibodies and anti-parietal cell antibodies to rule out pernicious anemia, but the doctor said she didn’t think I had an autoimmune condition based on the other lab results. My question is…why else would my B12 levels be SO low? Anything else I should look into? Thank you!
Chris Kresser says
It’s almost certain to be pernicious anemia if it’s that low. Other possibilities could be atrophic gastritis or another functional/inflammatory gut condition.
Freddd says
Hi Tiffany, It’s difficult for the b12 level to get that drastically low without something essentially totally blocking it. However, as the solution is the same, get b12 into yourself and needed cofactors for healing. If you take Enzymatic Therapy B12 infusion, Anabol Dibencoplex (AdoCbl, the mitochondria b12) and L-methylfolate, you will need to taqke potassium as well as your levels will plunge on the third day as cell formation goes into high gear.
Vivek Mittal says
Thanks Doc. That was very informative and am sure will change my life for good.
I am a 48yr young vegetarian male in India just diagnosed with B12 & D3 deficiency by my doctor here. My B12 level is 104. He has put me on methylcobalamin both injections for 4 weeks (twice a week) and orally 1 tab daily. I never thought it is so serious. I would have taken it lightly if I hadn’t read this article of yours. Would appreciate some further clarifications.
1. How long do I have to stay on this medication?
2. Can this be treated by one course of medication or will I have to be on this throughout life?
3. The symptom that worries me most is forgetfulness. In fact I won’t be wrong if I could say it seems like the early stages of Dementia. I have trouble recollecting thoughts and find very hard to concentrate on 1 thing. My mind keeps wondering. I understand this B12 deficiency could be the cause. If yes then will be restored once my B12 levels go up or will it remain same but not deteriorate maybe??
4. Is there any vegetarian product which has B12?? I eat eggs and other dairy products.
Would highly appreciate your advise.
Vicki Zerbee says
I feel strongly that many people are deficient in B vitamins. Factors in our current diets contribute to rob our bodies of B’s. I think that most people would benefit from supplementing. However, believe that it’s best to take a B-Complex supplement – to get the B vitamins closer to the way you would find them in nature – or food. You don’t find isolated vitamins in nature, and reminds me too much of drugs.
anonymous for now says
Hello All,
As it turns out, after being dx with MS for 4 years, injecting betaseron, having no tests that confirmed the dx, and my MRI, while consistent with MS, was also consistent with normal aging, I also had a brain stem tumor in the mid brain. That was batted around for a bit. Symptoms had been, poor gait, when I bent over, I fell down, vertigo when I would lay down, sensation of tongue becoming thick and causing difficulty in speaking, rare nystamus, hypersensitivity body wide, including sexually and sometimes feeling out of it with the sensations, in a fog. My evoked potentials, normal and he ran no other tests. The brain surgeon dismissed the tumor as probably a hamartoma, which is a growth from birth, non growing by itself and of no consequence. He sent me to his MS colleague for some lesions he saw and said “everyone I send to him has MS”. The MS clinic Dr., who made the MS dx, made it based on the above, started the shots, and while I got better, chances are I would have anyway, had been on topomax for some time and had already gotten better but relayed the symptoms previously had to him. My B12, which he drew but did not tell me about, was 261 dropping to 231, then he skipped a year, then it was down and finally it hit 151, my point being it was too low and it was dropping with no notice by him, a neurologist who knew enough to order the test outside of normal blood work but obviously either did not care or did not read the tests. I could go either way with this as he also was telling me each year the brain tumor was gone, when indeed I have had the displeasure to learn it was not, and also that it is not a hamartoma, or so the surgeon has back pedaled on. I, personally, have no idea what it is, but it is not growing.
To add to this mess, my symptoms were better by the time I came to him as I was already on topomax, that helped me with most of the bodily things. My personal life took a nose dive with a spouse who confessed to living a double life for the past 37 yrs in 2008, lost both breasts to cancer in 2004, father died in 2007, the women my spouse choose were all my friends, etc. I have been emotionally decimated over a short time period. I also closed a thriving investment company, was forced back into corporate America at age 51, with severe cognitive issues, so with all of this I was off kilter.
I am saying all this to say that after I followed Dr. MS to his private practice in 11/10, bells rang and I went back to the clinic where the replacing Dr. told me she doubted very seriouly my dx and went about determining if I had MS, and disproved it. Her philosphy is, you dx MS when you rule everything else out, which he did not. The cognitive issues were correct/helped greatly with B12 injections, (I have had all the required tests for everything discussed here before we go over that, no pern. anemia, gut issues, etc., all levels of the things you check, were checked) I am having a hard time getting my B12 above 400 and will deal with that as I can, I am struggling with so much.
I have been dx with CIDP and have a peripheral neuropathy with absolutely no doubt. I have demylation of my nerves in my legs, thus the numbness in my feet and hands are due to this. And, it is local nerves proven with EMG, not brain as would be the case with MS. My protein count with a lumbar was 123. I have had IVIG, with serious side effects and cannot take them again, and most recently medusol (prednisone), 1000 mgs infused over three days, so that I had 3000 mgs in three days (any of you who have had prednisone, taken the normal 80 mg, dropping down over 10 days, how do you think 1000 mgs, infused over 1 hour, three days in a row made me feel?), and it made me absolutely insane. It has been four weeks tomorrow since my last treatment and I cannot see a benefit from the steroid, but can still taste it in my mouth, so I am reluctant to do that again. I did get a benefit from the IVIG, I had reached the point that I could no longer lift my feet and as a result of IVIG, I can do that now.
The hospital that hired Dr. MS, and forced him to leave due to conflicts in his behavior and protocol, has been deliberating my case as well as several others, to determine damages. They sent my case to four esteemed Dr.s across the country for their opinions, did Dr. MS make a valid dx based on the information gathered or not? Ones opinion comes in tomorrow, two say yes, although my Dr. says that one of those two says he will not say, and one says no, he did not do due diligence. The risk mgmt ppl say, “your numbers were within normal ranges, those being 200-900, while he was here and only dropped below when he left”. Never mind that they were below 300 from the start and dropping and he ignored them. Never mind that I am properly dx with CIDP (chronic inflamatory demyeliating polyneuropathy). CIDP is considered by some to be the chronic form of Guillain Barre if any of you know of that disease, while others say that it has the same effects but is not actually the same disease. However, the end results would be the same were it not treatable or brought under control. I, so far, have not found a treatment that will work for me for the long term and due to the fact that I was not properly dx and treated from the get go, or even when my feet felt like I was wearing socks all the time OCT of 2010, and I reported this to Dr. MS, it goes to another level. I am seemingly progressive with little to no remission. Dr. MS wanted me on Tysabri, and to those who are aware of this medication, it is a wonderful med that is to be used when you have exhausted all other means, it has a fatal side effect and I was not going to do that. All the ppl in his outter office as I waited to see him in private practice were on Tysabri. You make your conclusions. He told me that he could tell I had MS lesions all the way down my spine by looking at a cervical mri, neck only. He told me that a place that he showed me on my MRI that was bright, had a lot of uptate of dye, was MS. It was NOT MS. He was using scare tactics to get me onto tysabri, imo. He was pushing a medication that he told those of us who attended many seminars he gave where he said tysabri was a drug only used as a last resort when all else failed. Yes, there is a test to see if you carry an antibody, and if you do not you cannot get the fatal side effect. You can walk out of the office and be exposed. There is not a shot to keep you from being exposed. It is all BS.
I need to prove to the risk mgmt dept with clear cut, concise material from a source that they will accept that the numbers we use in America are low, that we, in America, are reassessing this number. I need a place to go, a clinicians review area, where they make these rules or whatever you call them, that I can present to this unlearned man in risk mgmt. But, it will have to be something he cannot shoot down. I have the charts from the CDC from 2009 showing the difference they use for age ranges, that helps, but is there a place to go and download some assessment from a group like the CDC or a medical association?
I lost my career, my pension, my retirement stability. I do draw disability from my job, which is decent but I lost my stock options, my life. I worked hard all my life and have little to nothing to show for it, I had to use all that I had, retirement funds, etc, to stay afloat after breast cancer in 2004, until I could go to work when I closed my business. I was working on replenishing my stores and life, and with the improper dx, I lost my hard gained licensure, status and potential. At that time I was 55, you do not keep starting over. If they had properly dx me, treated the B12, I could have continued to work and I would have moved up. Not down. Or out. Now, I cannot augment my income or life, and all so someone could build a clinic. I have no idea if the medication I gave myself will have any effect. I just need help.
Sorry to be so long, I have had permanent damage and there are probably ten or more of us who were improperly treated and dx by this man, and not really knowing the number, it could be many more. The person who called this out to the hospital was the doctor who replaced him, not any of us. She was appalled at the number of patients who were misdx as well as the number of ppl who followed him to private practice and returned saying he was scaring them into tsyrabi. Of course I am not done with this.
Jinny says
I highly recommend the book “Could It Be B12” for all of you that have questions….it is a wealth of information. The author’s website is b12awareness dot o r g
Helene says
If you have the MTHFD gene, there is a possibility it could lead to pernicious anemia too.
Lucia says
Thank you for the great post and information Dr. Kresser!
To those in doubt about the seriousness of B12 deficiency, I can tell you finding out the HARD WAY that you are deficient is horrible. In May 2007 when I was 30 I ended up in the hospital with a severe case a ataxia and nystagmus. I was in the hospital for 8 days, where I was initially diagnosed with MS. After almost every possible test available was performed on me (3 MRI’s, Cat Scan, Spinal Tap, blood tests every day, to name a few), they only thing that was wrong with me was a B12 level of 110, with sclerosis of the brain caused by the deficiency. Since then I’ve taken B12 shots every month, and have been much better. There was a period when I doctors were trying to wean me off of B12, but that caused me a severe metabolic imbalance, so I was back to B12 shots again.
Right now, after new B12 tests, it was discovered that even though with the monthly shots I take, my B12 level is still low (475), which dropped to (261) after 7 weeks with no B12 injection. So, in addition to being back to B12 shots (of the Cyanocobalamin kind), I’m also supplementing myself with sublingual Methylcobalamin. Hopefully this will increase my B12 levels back to normal (I hope at least to 600), while my doctors try to figure out again where in the process I seem to not be assimilating B12 (I’m a meat-eatrian, with no reason WHATSOEVER to be deficient).
Word of advice: The only reason why ((it seams)) I was not diagnosed with a B12 deficiency before, was because doctors had me labeled as having depression and anxiety, which was causing me to have low body weight -all bullshit!. They had me on medication which improved my mood, but physically I was still deteriorating. I had to end-up in the hospital for anyone to realize my B12 deficiency.
Anyhow, wish me luck!
But seriously, if you’re vegetarian or vegan, or if you find yourself tired and achy all the time and unable to keep a decent weight, have your b12 level check -it is worth it!
Dr. Kesser: Are there any other tests I should demand from my Doctors? The only one I know they did, was Intrinsic Factor, and supposedly that one came negative. Any help would be appreciated!
Carole says
I recently moved from Scotland down to England ….. I was diagnosed with PA over 20 years ago and have been having injections of B12 6 weekly for the past 10 years ( prior to that I started for a few years 12 weekly then went to 8 weekly ) When I registered at my new GP he refused to give me by injection ( which was due ) until I had a blood test. The test came back with B12 levels of 1152 …… and he is now refusing to give me my injection until results of a further fasting blood test are back.
I am beginning to panic now …… not only ( because my injection is nearly a week overdue ) do I feel lethargic, headachy, woolly headed and generally unwell, but I am not sleeping at all because I am so worried this GP will refuse to give me B12 jabs at all. Within 36 hours of having my injections I always feel ‘ back to normal ‘ bright, alert and my headache disappears …… I feel my life ( and that of my family ) will be ruined if I don’t have my regular injections. What I can’t understand is why …. after 20 years of my B12 injections alleviating all the awful symptoms I get, this GP can think for one minute I don’t need them ?? I know my levels were high in the blood test but surely the remarkable change in how I feel after having my jabs speaks for itself ??
Kristin says
O.k. so here’s my question… my B12 has been falling steadily for about a year despite taking 1000 units of B12 a day… first 186, then 170, fell to 156, was 130, and so my GI specialist tested me for pernicious anemia ( I should mention I’ve also been dx’d with Fibromyalgia last March). I’m still waiting for the results and it’s been over a week since the test (tested the B12 level too… I suspect it is lower given my level of fatigue, brain fog, and hand foot involvement). I’ve recently had a plethra of other issues, including sternum pain, rib pain, chest pain that radiates to my back in and around my left shoulder blade, and hip pain. All of this feels unlike my Fibo symtoms, and more like bone pain. So let me get back to my question… If this pernicious anemia test is negative… should I be worried? Could there be another serious underlying problem?
Thanks for your time and assistance.
Kristin
Beth says
Hi Kristin,
I am not a doctor but your description reminds me of an autoimmune condition I was diagnosed with. The rib, sternum and back pain get worse when laying down and are somewhat relieved by movement. Google reactive arthritis or ankylosing spondylitis.
I’ve also had a lot of neuro symptoms similar to what have been described in this thread. My doctor has me on B 12 and at times I have been anemic in the past.
Anyhow, good luck!
Kim says
I started with sensory problems and pain in my joints when I was about 21, shortly after the birth of my son. Long story short, after seeing several doctors and having some investigations they decided I had fibromyalgia. I wasn’t so convinced by the diagnosis as although I exhibited many of the symptoms I had many other symptoms that were not covered by the fibromyalgia umbrella however, feeling like the Dr’s were seeing me as some crazy hypochondriac I had to accept their decision and just get on with things, albeit with the assistance of crutches as I could no longer walk unaided.
Fast forward 5 or so years during which time I had many symptoms such as intermittent burning feet, with intense pins and needles which I casually mentioned to my haematologist (I have an auto immune disease chronic idiopathic thrombocytopenia) who said it had nothing to do with my blood problem and did not investigate further. Then I noticed that my fingernails had developed ridges in them and decided to see if I perhaps needed a vitamin supplement as i have been vegetarian for 20 years. After a search online I was shocked to see the signs and symptoms of b12 deficiency, many of which I clearly had, I went completely grey by the time I was 25 and no one seemed to see this as an indication of anything being wrong.
Next time I went to my haematologist I asked him to test my b12 levels at my next routine 3 monthly blood test, he agreed but said it would be unlikely to be low. However, they were at 192 and when I went to get these results I actually saw a different doctor due to mine being busy with new patients and I had to ask if the results had come back … kind of expecting them to be normal and she looked and said … hmm, yes they are low …. and your iron has been low …. forever. She put me in for more tests for the intrinsic factor, celiacs and thyroid test and for a repeat b12 test in 3 months with no supplements in the meantime. When I went to get the results, the intrinsic/thyroid and celiacs test results were not back but my b12 had dropped further to 183 and my iron levels had also dropped.
My consultant has put me on monthly b12 injections and is seeing me again in three months. Had my first jab today so of course have not felt any benefit yet but I hope to perhaps in the future, although I would imagine that much of the nerve damage I am exhibiting is now irreversible.
One other thing i would like to mention is that from time to time I have been treated with short term, very high doses of steroids and long term lower doses of steroids for my thrombocytopenia when my platelets have been very low, during these times I felt a great deal better in myself as a whole, I read something yesterday about steroids actually helping the absorption of b12 or something along those lines and wonder if this is why I always felt so well on steroids and so dreadful when not.
Doctors really need to be on the ball with this, luckily even though I have to walk with elbow crutches and am in a lot of pain on a daily bases I have managed to stay in work and still contribute to society but this has only been due to my own determination and I am sure there must be a lot of people out there on welfare etc when a simple b12 shot could allow them to lead full and healthy lives. I have written to the BBC today about my case and am hoping that some media exposure could really get this discussion going especially with regards to the so called ‘normal levels’ decided by the NHS, which are clearly too low.
Sorry for the long post and I understand if anyone says tldr … but I felt it important to give the whole picture
Angela B says
Hi. Very Interesting information. I had a B deficiency test done a month ago. Dr. Sent it off to Mayo Clinic. A week later I had a notice of Urgent and a phone call. Dr. ordered me to take 50 mg of B6. I went and bought a liquid b complex that has 50mg of b6 in it. I take medication due to anxiety, and antidepressant zoloft. I have been on zoloft for 14 yrs. I have been taking the B complex for two weeks now and I am getting these “zaps” all over. This I was told was from a neurological problem …this happens every time I stop my zoloft for 2 days, however since I have been taking the B complex, and the zoloft…the zaps are here, I feel weird and am really confused feeling…what is going on? This is really scary to me because it appears the zoloft does something to the neurological system and this b complex is battling that. The reason I asked Dr. for B test, is I was having very bad symptoms for along time…including swelling of lymphatic system…throat, neck…different area’s of internal areas of body, very bad digestive problems, anxiety, pmdd, or a form of mild depression, I am certain there is some link to this with my medications and B …..and my son…he is high functioning autistic…could this be a problem as well. My Dr. had said that B deficiency (not just B12) is very rare. Why did he order B6? I really am praying for some ideas or tests to ask for or what kind of dr. I should see because my family Dr. seems to not know a whole lot about this. Your advice would be very appreciative. 🙂
angola says
I have not been eating meat and have had neuro problems. I will resume meat. How much do I need? Is a couple of buffalo or hamburgers a week enough? I will ask my neuro to give me rx for b12 injection. I have had inner tremors and one episode of violent shivers along with nerve pain and swollen tongue, mouth and tongue sores. Also diagnosed with eosinophilic esophagitis. Any connection between that and B12 absorption problems?
Clare williams says
Hi I’ve been reading these posts with a lot of interest. I was diagnoised with b12 deficiency four years ago and given oral b12 my levels increased and tingling and vibratingfeelings got much better my levels were 158. My gp took me off b12 twice as my levels were high but my symptoms cane back. Object changed my gp and my levels were 258 the gp told me they were normal and refused to treat me. I told him that my levels were158 at one point so he gave me an injection this helped the symptoms but they did not go like they had previously so I asked for more frequently injections so I’m on one every two months. The go told me the symptoms were not due to by b12 level ad they were normal at 377 I still have symptoms the gp referred me for verve conductive tests which were 100 per cent normal and now I’m referred to a neurologist and I’m worried it’s ms but my symptoms were ok when I was on 50 mcg tablet per day. Are theses symptoms of ms?
B Johnston says
Thanks for the informative post; what brand and dose of B-12 do you recommend? Not sure if you want to endorse but couldn’t find any recommendations as I tried to slog thru the long thread. Thanks in advance!
Chris Kresser says
No particular brand, but the form is important: methylcobalamin.
yasmin says
Hello I came across your website and I just wanted to ask you some questions regarding b12 deficiency. I have many symptoms of the deficiency like anxiety. Panic attacks, loss of balance, foggy mind. They tested my b12 level and it was at 372. Which to some is believed to be within the normal range which is confusing to me as to why I have the above symptoms. Anyhow I take 1000mcg of b12 time released a day but I just started 3 days ago. I was wondering if 372 is in fact low enough to have symptoms as well as cause alzheimers and irreversible damage? Also how much b12 should I take daily? And this might sound ironic but when I take the b12 I feel a little anxious and have a little trouble sleeping, could that be from the b12 pill? I eat plenty of meat, chicken and all kinds of food so I am not sure how I got this low. Also is it better to take sublinual vs oral capsules? I just want some solid good answers from an expert. I appreciate your help thank you so much,
Sindee Edwards says
51 years of age and working a 3 way police shift pattern full time. Underactive thyroide diagnosed 18 years ago, B12 deficiency diagnosed 5 years ago. I was anemic last year.
I have been to the doctor for test 3 times now with complete exhaustion, aching legs, arms, neck and bad headaches. Tests show now my folic level is low. On 3 monthly b12 injection. I need my brain for work, but body and concentration is letting me down.
The question are:- Does anyone have flue like symtoms after their b12 injections and is there anything else I can do to help my conditions.
Rose says
Have you considered being tested for gluten intolerance? I was 59 when I finally realized that gluten was wreaking havoc in my body. Since going gluten free, my chronic fatugie has vanished. Also, B12 is hard to absorb from the small intestine if it has become damaged by gluten. My personal opinion is that gluten should be banned, period. Google gluten intolerance and the diseases it causes. You’ll be shocked.
lilly says
Hi Chris,
I have some terrible symptoms and I am not sure if they are related to b12 difficiency or maybe some cortisol problem( i have pcos and insulin resistance)?
The symptoms are: numbness and tingles troughout the body and face, severe heat and tingles in the faceand head(sensation like fever) , bloodshot eyes, sudden weakness and deconcentration and memory loss. These symptoms are the worst just after a meal! ( I eat low carb Paleo).
What do you think it could be?Thanks!
SuzieD says
Hi Chris,
I am just wondering if there is a link between low b12 levels and osteoporosis. I’m in my late 30’s and was diagnosed with osteopororis a couple of years ago (at the time it was thought it was brought on by use of steroids as I am an asthmatic, but the medics never got to the bottom of it). I am on Calcium & Vit D supplements but nothing else due to being of child bearing age. I had low B12 levels a number of years ago and received a course of injections at that time, but it was something that was never really checked after that until last year when I started to have scary neurological issues with muscle twitching, muscle cramps particularly in my lets, feet etc. The muscle twitching was scary experience happening over my whole body for weeks on end. My Gp ran some more tests and came back with low B12 and high platlets. My blood pressure has been on the high side on occasions over the last year. While a course of weekly B12 shots helped with the neurological issues, it was decided I would have 3 monthly shots. What was recently noticed by the GP is that while my B12 increases after shots, it falls dramatically after 3 months and thus GP has agreed to give me monthly shots just recently. I also suffer alot with colds and flu’s which I am beginning to think is linked to perhaps a low immune system as a result of the low b12 – could this be right? I’m an asthmatic so the cold/ flu experience is always that bit worse when I get it.
I am just wondering what your advice is on the links. Pernicious anaemia was something my GP has never mentioned – should I look into this also? How is this diagnosed? I don’t think my FBC/ CBC has ever come back stating I’m low in iron so maybe this is not an issue. Maybe now that the GP has agreed to monthly shots, that is all I need to do. Any advice at all would be much appreciated. I am also interested if you have any advice on the low b12 / osteoporosis link. I am delighted I came across your site – I don’t think often this issue is taken seriously enough. Many thanks, SuzieD
Mona says
Thanks Chris for your quick response!
Yes I did get the anti-parietal cell antibody test done in March ’10. It came back positive whereas my intrinsic factor came back negative. My understanding was if those were the readings I did not have pernicious anemia???
On a side note, at that time, my Ferritin level was 9 ug/L. Also my Folate was >45.0 nmol/L. As of July ’11 my Ferritin is 12 and Folate is >40.0
Mona says
In Dec. ’09 I was diagnosed with a B12 deficiency. My level was 85. I started with 1000 mcg injections of cyanocobalamin daily for 5 days. Then progressed to weekly until May of ’10 and since then have been getting injections every 3 weeks. My last level reading in July ’11 was 279.
In Nov. ’10 I was diagnosed with Subacute Combined Degeneration of the Spinal Cord. I use a cane to walk due to my balance issues. I have next to nothing for vibration sense though my reflexes are increased. In the dark or when I close my eyes my balance is severely compromised. Tingling and numbness are present in my hands and especially my feet. My short term memory and concentration have been affected.
It is confusing to me that none of the physicians I have seen are very concerned as to why, in the first place, I developed the deficiency. I am not a vegetarian, I do not drink, have not had stomach surgery of any kind. I did get tested for parietal cell antibodies ….. positive …. and for intrinsic factor antibodies …… negative. Not really sure what that means if it means anything.
Also confusing is to why some of the doctors I have seen are saying that my symptoms would appear to possibly be non-organic?? One says one thing, one says another. According to them my levels are “normal” and I should be better by now. If I think back, I have been dealing with odd symptoms and had 2 emergency room visits before my diagnosis in Dec. ’09. Quite possibly if someone had checked my levels then it would have shown and I wouldn’t be dealing with this 22+ months later??
If anyone has any ideas or more questions I should be asking, thank you in advance!
Chris Kresser says
Mona: were you tested for pernicious anemia? That’s the autoimmune disease that causes severe B12 deficiency. Anytime I see levels as low as yours I immediately suspect that. Ask your doctor to test your anti-parietal cell antibodies. 90% of people with pernicious anemia will test positive for them.
Linda Kapin says
Hi Chris
I have really enjoyed reading your postings! Just recently I have been diagnoised with B12 deficiency. I am a 65 year old female. Oct./Nov., 2010 I was hospitalized for 22 days for breathing difficulty, severe swelling of body, especially feet and legs. Upon hospitalization my RBC was at 4. I was immediately given an !PO injection to stimulate my red cell count. However, my count did drop to 2. It would then rise a point or two, then drop a point. This happened for over a week. I do understand that I had double Phneumonia which would account, along with the extremely low RBC, my difficulty with breathing. Also, 2 liters of fluid was drawn from behind my rt. lung. Gradually my RBC did raise, and I was released from hospital when it was at 8. Dr’s. never did find a cause for my low RBC, nor for the unusual color of the fluid drawn from behind lung. After 22 days of test after test, no cause was found for my LOW RBC, nor for why it took so long for the count to rise. However since then, I am doing much better. At my last Dr. appt. Dr. said B12 low, gave me an injection and prescribed me Cyanocobalamin 1000MCG/ML. I forgot to mention that I also have acid reflux and IBS which keeps me house-bound often. Since my hospital stay I have gained a little over 25 lbs. and do retain a lot of fluid. My weight gain is NOT due to over-eating as most Dr’s. would want me to believe. Is there anything you might recommend me? ANYTHING would be appreciated!
Linda
Moongirl says
Linda,
My IBS went away when I treated my B12 and Vitamin D deficiency, which includes stopping my PPI (Acid reflux medication). Get the book Your Inside Tract by Gerard Mullin and Could it Be B12. I lost 31 pounds so far ONLY by stopping acid reflux medication and starting B12 and D3. Find a naturopath or an integrative medicine doc to help you get your acid reflux under control using natural means. I take HCL tablets before meals. I rarely have bad reflux anymore. I am 41 and was on PPIs daily for almost 20 years. I had IBS 15 out of 30 days in Jan, Feb and March. As soon as I started treating my B12 and D deficiencies it was GONE.
Donna says
I’m not sure where to create a post so I am just responding here. I am a vegetarian and I can say emphatically that you CAN get B12 from nutritional yeast – NOT brewer’s yeast and NOT yeast that we all cook with. I put a tablespoon in my oatmeal every day. My folate, serum is 21.2 and my Vitamin B12 serum is 1044. I’m not hawking any particular product; I order mine from amazon, but your local health supply store may carry it. It has somewhat of a nutty flavor. So before doing anything else, I’d at least give the nutritional yeast a try. My GP asked ME how I have such good numbers.
Molly Malone says
Nutritional yeast only contains B12 because it has been added to it = fortified. It is NOT naturally occurring, lest someone be deceived.
Eating this yeast may well be a good choice, but make sure it is indeed fortified as not all are and therefore not all have B12.
“It is a source of protein and vitamins, especially the B-complex vitamins, and is a complete protein. It is also naturally low in fat and sodium and is free of sugar, dairy, and gluten. Sometimes nutritional yeast is fortified with vitamin B12.” [http://en.wikipedia.org/wiki/Nutritional_yeast]
“Nutritional yeast is grown on enriched purified cane and beet molasses under carefully controlled conditions. T6635, with the addition of vitamin B12, is an ideal vegetarian support formula and has an appealing cheese flavor. It can be sprinkled over popcorn or salads, added to juice, cereal, smoothies, gravies, soups or casseroles, or used to make sandwich spreads.” [http://www.bobsredmill.com/nutritional-yeast.html]
“The vitamin B12 component in B12 supplements and fortified foods is made by bacteria and sourced from bacteria cultures; it is not taken from animal products. However, some companies might put gelatin in their B12 supplements, though this appears to be less and less common. It is easy to find vegan B12 supplements on the Internet or in grocery stores in developed countries.”
“There are many vegan foods fortified with B12. They include non-dairy milks, meat substitutes, breakfast cereals, and one type of nutritional yeast.”
“Brewer’s and nutritional yeasts do not contain B12 unless they are fortified with it. There is at least one vegan, B12-fortified yeast currently on the market: Red Star Vegetarian Support Formula. (Twinlab’s SuperRich Yeast Plus contains whey).”[http://www.veganhealth.org/b12/vegansources]
“itamin B12 is only produced in bacteria. No plant or animal is known to produce vitamin B12. This is why we require dietary sources of this vitamin to meet our nutritional needs. Many animals, however, are able to concentrate and save vitamin B12 produced in bacteria. As such, animal foods end up being important sources of this vitamin. Plants do not concentrate or utilize vitamin B12 in the same way as animals, so plant foods do not provide this vitamin.
Seafoods, in particular, concentrate vitamin B12 well. All eight of our listed excellent sources of vitamin B12 are seafoods. A single serving per day of many types of seafood will meet or exceed your daily intake requirement. Older sources may claim that some plant foods—tempeh or spirulina, for instance—can be good sources of vitamin B12. This is because the laboratory assessments we use to find the small amounts of this vitamin in foods can pick up the presence of related (but different) compounds. The only usable vitamin B12 you’ll find in plant foods is residual from manure or bacterial contamination.
Nutritionists currently recommend strict vegetarians or vegans use fortified foods or supplements to ensure proper vitamin B12 intake. For our readers that follow this dietary pattern, we agree with this public health recommendation.
Nutritional yeast grown on a molasses medium is an example of a food-based quasi-supplement approach that would provide a vegan source of vitamin B12. One widely available brand has more than twice the Recommended Dietary Allowance (RDA) for B12 in one and one-half tablespoons of yeast. Note that not all nutritional yeasts are rich in vitamin B12, and that you’ll need to check labels for details.” [http://www.whfoods.com/genpage.php?tname=nutrient&dbid=107]
Margaret says
Hum, I was just going to add the same thing — I had read an article recently stating that the “methylmalonic acid concentrations (either serum or urine) are a much more reliable metabolic measure of vitamin B12 metabolism”. Article can be found here:
http://chetday.com/b12.html
It is also mentioned in this article that produce grown in cow dung may contain more B12 than commercially grown produce. The author does not go into detail about this, but I wonder if one can conclude from this comment that healthy cows eating grass (and not fed antibiotics) would produce in their gut healthy bacteria that produce B12 and when their dung is used for fertilizer on human crops (assume no pesticides), the beneficial bacteria and their B12 producing capability is passed on to humans.
To me, the ramifications of this is staggering — the pesticides and artificial fertilizers used in food production not only destroy the life in the soil, they deprive our bodies of the beneficial bacteria we need to produce B12. Add to that formula our medical system that uses antibiotics, vaccines and pharmaceutical drugs that all destroy beneficial flora in the gut and you have a recipe for disaster! I firmly believe that we have unprecedented levels of mental illness in this country due to lack of B vitamins, particularly B12, due to the destruction of beneficial B producing bacteria by the above methods.
Dr. Campbell-McBride has written “Gut and Psychology Syndrome” and describes how the destruction of beneficial bacteria in the gut leads to damage of the gut which can produce a host of symptoms and illness — from dsylexia, ADD and autism to bipolar and schizophrenia. I would add to that list Alzheimer’s. She uses diet including bone broth, fermented foods and probiotics to heal the gut. There is a yahoo group for families following Dr. Campbell-McBride’s protocol for support and sharing of ideas. There are many inspiring stories of autistic children speaking for the first time after following Dr. Campbell-McBride’s protocol.
I have suffered from B12 deficiency for a long time. I believe my B12 deficiency stems from 8 mercury fillings at age 12 as my health declined after that point. Now I also have a hernia and stomach ulcer which further contributes to my digestive issues and inability to absorb B12. I used sublingual B12 for years with okay results. I did not want to do injections myself and I do not have health insurance.
However, the best results I have found for getting B12 have been to take a probiotic recommended by Dr. Campbell-McBride. The probiotic is Bio-Kult, it’s made in the UK and it contains a soil bacteria which Dr. Campbell finds the most helpful in treating autism. When I compare the results with this probiotic and taking sublingual B12, I feel 100 times better on the probiotic. My sleep, mental state and ability to think have improved dramatically. I seriously wonder if those with a high IQ might just have more B producing bacteria in their gut.
One last comment — a friend recently returned from France and she told me she was denied a B12 shot. The physician told her that they have found a connection between B12 injections and cancer so they are limiting B12 injections to 4/year. This cannot be good for those of us with severe B12 deficiencies.
Thank you for the article and I appreciate all the thoughtful comments.
Chris Kresser says
Serum MMA is notoriously inaccurate and is not a good measure of B12 deficiency. Urinary MMA is accurate, and can be used along with homocysteine to determine B12 deficiency in cases where patients may have a falsely elevated serum B12 level (i.e. alcoholism, liver disease, intestinal bacterial overgrowth, lymphoma, etc.)
Dr Ben says
Chris –
Great post.
I’d like to add the fact that B12 deficiency, while a huge issue, is not the largest problem.
There is a genetic defect in the MTHFR gene which causes serious implications – similar to the B12 deficiency but escalate the effects more broadly and more seriously.
Given that more than 50% to 70% of the population has one of more mutations in their MTHFR gene, it is an important one to evaluate in people.
If someone has the MTHFR mutation, and they supplement with inferior forms of B12 such as cyanocobalamin, they are not able to transform it into the active form of methylcobalamin.
The doctor will test their ‘serum cobalamin’ levels and say they are ‘fine.’ The issue is the serum cobalamin is a measure for the inactive B12 form – not the active form. That said, it is crucial to test for methylmalonic acid (MMA) to truly identify a vitamin B12 deficiency.
What does this have to do with MTHFR mutations?
People with MTHFR mutations cannot methylate B12!
I am making this one of my specialties as people are not getting the information they need on it nor are they getting doctors knowledgeable in it.
To understand the conditions which MTHFR may play a role in, I’ve written an article here:
http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/
I hope you and I can do a podcast on this very important subject soon.
In health,
Dr Ben
June says
Hi Chris,
I’m June all the way from St Andrews in Scotland…across the pond so to speak. Very interesting info’ you have there and thanks so much for sharing. I could spend all day reading the stuff, ( but I got lost after the 22nd posting and require laymen terms PLEASE!) I want to know what type of B12 do you recommend I buy, what brand and where can I purchase it whilst on a tight budget. As you know we ain’t doing so good, at the moment, on the financial front in the UK.
Very hard to get a GP who will test you for vitamin and mineral deficiencies, still a bit of the old school stiff upper lip attitude over here regards new ways of thinking, but that is changing.
Thanks so much and hope to hear from you soon
Kind regards
June
Rose says
It’s the same here in NZ, June. Can’t get vitamin and/or mineral tests at all. As far as B12 supplementation goes, as far as I understand it, sublingual B12 is the best. Solgar puts one out, 1000mcg tablet. I am using methylcobalamin (B12) drops. They’re only 50mcg but I take as much as I want of them each day.
Crystal says
I found that I have a b12 deficiency and I began supplementing with methylcobalamin. Even 1mg sublingual seems to upset my stomach and I feel pretty spacey and weird. I have trouble sleeping as well and I always take the b12 in the morning. Any advice?
Angelica says
Please excuse all of my typos. I was just so excited to read the other testimonials, that I was so much in a rush to give mine. Woopsie!! 🙂
Angelica says
Hey all!!
I stopped eating both read meat and pork about 11 years ago now. WOW, just did the math and didn’t realize it was so long ago. I am currently 23 years old. About 4 years after I had stopped eating red meat, my mother began to notice that I had been forming dark circles under my eyes. I had assumed it was due to a lack of rest because I was always on the go. I slowed down on my activities, and they darkness went no where. When I began Undergrad, it was very often that I would feel tired. Not only was I tired, but when it would come down to studying, I would be in the library for hours trying to retain information. In highschool, I was an honor-roll student, and I loved to learn, but this made me feel dumb. On my internship I would feel veryyyy tired, and would occasionally doze off. It wouldn’t matter how much coffee, or how many energy drinks I would consume, nothing really worked. I became extremely embarrassed, and this is when I began to feel as though something may be wrong with me. My mother encouraged me to take multivitamins and doing so made me feel a little better, but I began to neglect those. Since I graduated from Undergrad in 2009 I’ve had a hard time holding a job because of my dyer need to rest (falling asleep on the job). I started to think I has some sort of sleeping disorder or something. I had to get a physical for a job, and 3 weeks after the physical, I received a letter from the physician stating that were defenciencies found in my blood test. I ignored the letter because I was scared to find out what the issue was. My present job asked me not to go back into work until I was tested for narcolepsy due to falling asleep on duty (again). It was at this point that I that it was crucial for me to find out the results of my blood test in hopes that it will give me an answer to my weak, fatigued, cloud-minded body. Come to find out….my B12 is extremely low (says my physician). The first thing she asked me was if I ate red meat. She told me to go to the pharmacy and get the B12 vitamins. The thing that tripped me out is that something so simple had such a bigggg effect on my life!! I’ve been taking the B12 and seriously…this is no placebo or anything. I know my body and how it felt before and omgggg!!! What a difference!! No naps needed throughout the day, I feel sooo much better!!!! WOW!! Ok sorry for the novel but I just wanted to share that with you all!!! *be blessed*
Eric says
Did your dark circles go away then?
kt mcloughlin says
Thank you for such a promt response. I will order that book. I rang my doctor yesterday and as my level is 210 she said it is at the low end of normal and will only recommend injections every 3 months. I said i would like them more frequently to begin with to get my level up and she got really defensive. I said i knew my own body and the difference I felt before when I got my level up high was incredible ( different doc then who has emigrated since) but she just said no my level is in normal range now! my friend I live with is a nurse and she gives me the injections but doc is refusing to renew my prescription for any more then every three months. I am furious and i just think doctors in Ireland are so under educated on this condition. I am obviously going to look at changing doctors
coral says
Hey, it’s not just Ireland they’re uneducated, it’s everywhere. Apart from Dr Chandy in England (perhaps Newcastle?) who has been giving patients B12 shots and basically changing their lives. he was nearly struck off for this though. I mean, perish the thought-a GP actually helping people and making them well! You can look him up on You Tube. The medical profession make me soooo mad! Do they want to help people or not?? Grrrr…
kt mcloughlin says
Hi there, I was diagnosed with b12 deficiency 4 years ago at 23. My level was 96. I got injections over a period of months and my level went right up. I was then told I could stop injections as I was testing negative for pernicious anemia. I recently returned to my doc feeling so down and my level was tested and had plumeted again. I once again tested negative for pernicious anemia. i have recently had an endoscope too which showed nothing strange, thank god, and the specialist there said as my diet is balanced and no obvious underlining condition I can presume i have anemia and said that the test is not always right. Is this true? Can i still have pernicious anemia but not test positive for it? It’s really starting to effect me with memory loss, lack of concentrating and my face looks so tired all the time. I have received nearly 6 injections in the last 4 months andy level has only increased to 210. Feel quite alone as feel like its only a vitimin and shouldnt be affecting my life this much. Would love to hear from you, thanks
Chris Kresser says
B12 levels between 200-400 have been associated with neurological damage in the scientific literature. I strongly suggest picking up a copy of the book I referenced in this article, “Could it Be B12”, reading it, and taking it in to your doctor. Many doctors are under-educated about B12 and the devastating effects of ongoing deficiency.
Rose says
Just a follow up to my story. I saw a doctor last week and requested an active B12 test. I was refused outright. Thank goodness I can buy B12 and self-administer. I dread to think where I might be otherwise.
Julee Ellison says
Your doctor would not order the test? Why?
Rose says
Doctor said that my serum B12 test was so high, there’s no way I could be B12 deficient. I disagree, but doctor knows best, right? I am seeing a different doctor soon and will request it again.
fyo says
Can’t B12 be obtained from animal feces?
Rose says
I am so thankful that I found this website and the information I read about how a serum B12 test could be 90% out because it doesn’t differentiate between active and inactive B12. If I hadn’t read that I would still be thinking I was fine as my levels are very high. However, my RBC count has dropped over the last 3 years to the lowest level of normal. I fit more than one of the risk groups, being over 60, have low stomach acid and malabsorption due to a damaged small intestine from undiagnosed gluten intolerance.
About 9 days ago I started supplementing with sublingual methylcobalamin, 1000mcg daily. I had blood tests done 2 days ago and my RBC count is on the rise! It has risen by .2 and I hope it goes up a bit more yet. I’m not sure if it will on the same dose or if I should increase it, but at least it is finally heading in the right direction.
Again, thanks so much for the information on this site.
Julee Ellison says
I have been taking the LifeExtension Methylcobalamin 5mg sublingual tablets, but do not like how long it takes for them to dissolve. So, when I read about someone on here that uses the Pure Advantage B-12 spray, I was so happy! I’d much rather do a spray.
However, I just got it, and realized that it is only 500 mcg (0.5 mg). So, the question is, even though the directions say to do one spray per day … should I do 10 sprays per day to get the 5mg’s in?
Thanks for any help you can offer!! Warmly, Julee
cecilia says
Hi Chris,
My sister is trying to become a vegan, and I am trying to explain to her she may be B12 deficient. She gave me this article to “prove me wrong” http://www.naturalnews.com/029531_vitamin_B12_vegan.html although I know this article doesn’t seem very reputable, do you have any thoughts on what has been said in it?
“According to Dr. Vivian V. Vetrano, vitamin B12 actually comes from coenzymes, which are already present in bacteria found on the human body (in and around the mouth, for example)”
Regards,
Cecilia
Jinny says
First of all this is not just a vegetarian/vegan diet issue….meat eaters are just as deficient!! Could be an environmentally issue on the body.. I am vegan and years ago had all theses symptoms and found it is not true that B12 only grows in the gut bacteria of animals. It grows in bacteria that does not have to be in an animal. I take a vegan form of B12 in methylcobalamin form made by Pure Advantage as a sublingual for the best absorption. The last time I was tested my levels were above 650. I can tell when I need to up my B12 because my hands fall asleep when I am sleeping…here is where I get mine http://www.vitacost.com/Pure-Advantage-B-12 Also I feel better now at age 46 than I have ever felt in my 20’s and 30’s as a “meat eater”!!!!!!!!!!!!!
Chris Kresser says
I’m glad you found an approach that works for you Jinny. However, it’s simply not true that meat eaters are just as deficient as vegetarians and vegans. Countless studies prove otherwise.
Jinny says
As always we have to be aware of who funds these studies…and who funds doctors and websites on the information they are providing…. The meat and dairy industry are Billions of dollar businesses a year!!
http://www.gabrielcousens.com/SACREDSPACE/SPARKTHESOUL/GABRIELSBLOG/tabid/364/PostID/114/language/en-US/Default.aspx
“Many people have heard that vegans are low in B-12. That’s absolutely true. Meat-eaters are deficient, too. There is a minimum level of B-12 you need to survive and a maximum level that is optimal for long-term health. At the minimum level, (180-200 nano-grams of B-12), 80% of vegans are deficient, but 40% of meat eaters are deficient at these levels as well. When you look at optimal intake of B-12, (400 units in your blood), meat eaters are equally deficient. It is likely that 90% of meat eaters and vegans are deficient at optimal levels. The best thing for everyone is to take a B-12 supplement. When I was at Columbia Medical School in the 1960’s, they did a study that found that 30% of people judged to have adequate B-12 levels (mostly meat-eaters), had dramatically positive responses to getting B-12 shots. Depression went away, and sense of wellbeing was reported in many study participants. Even in 1960’s they knew that on average people are low in B-12. I just want to emphasize the point that everybody is low in B-12. It is a big problem.
Why is this a big deal? People who are B-12 deficient have more brain shrinkage. With age, your brain begins to shrink. We can protect against a lot of shrinkage through simple B-12 supplementation.”
Jan says
Hey all,
I posted some time back, had been misdx with MS, new doc felt it was my deficient B12 (125 or something). She was thorough, as much as I know, testing M. Acid, intrinsic factor, all the ones that you guys have talked about. After two weeks of weekly, if I remember correctly, and then a month of weekly, I was only up to 500. It took amother month of weekly to get to 1500, which was not great for the amount I was getting (by IM shot). So, I was then dropped back t monthly, but the first month my level fell to 400, the to right at 500, where it has remained. My thing is, I am, seemingly, at the optimum minimal level for someone in my situation. The B12 shots helped my depression immensely. An issue I had fought most of my life, I am 59. But it did not stop the progression of the neuro symptoms that brought me to a dx of MS, then B12 def, ie: numbnes, tingling, falling down, unable to lift my feet to climb stairs, no grip with hands and all reflexes gone. They now have dx me with CIDP, a chronic form of neuropathy that is an auto-immune disease, similar to Guillain-Barre syndrome, but chronic and slower acting with the same results. CIDP will eventually paralyze you if not brought into check, is incurable but great strides have been made for treatment options and this rarely happens. I am a hot mess. Whatever should be the bad thing, is me.
I did have a endoscopy and colonoscopy with biopsies, all clear. No other blood count issues until I was given treatments with IVIG, wherein they put other ppls antibodies from their blood into my system. My blood work then went whacky, white cells are too low, red ones jumped around for a minute. I also developed aseptic meningitis from the treatment, which happens to some ppl, and usually if IVIG works, it becomes your treatment method going forward at the time intervals you need, but if you get AM, you will continue to get it with each treatment. It may lessen, but you will get it.
I have had good results and and bad from the treatments, and the Dr. may not allow more due to the side effects, but my B12 is hanging at around 400. This Dr. at first glance just looked at the US standards of 200-900 and said, you are fine, and I said, no I am not, ,please look into this. He did and is on board now.
I feel lost. I also have a midbrain tumor in my stem. My protein in my lumbar punch was like 126, but a brain tumor elevates that also. Elevated protein is a marker for CIDP.
Jan says
I meant two weeks of daily. oops
Julee Ellison says
Wow! Thank you so much for that link!! I have been doing the sublingual tablets and I hate them ,,, they take forever to dissolve! I love that you just do one spray a day!! Thanks bunches!!
amy says
I just came accross your article and I have 2 quesitons:
I have recently gone through 2 miscarriages and they were my first pregnancies. Could this be a cause? I’m struggling to find a cause so I can go on to have a full term, healthy pregnancy. I’m not real careful about getting enough meat in my diet, more careful about getting fruits and vegetables but I am a meat eater.
Also, my husband suffers from what he was diagnosed with as Diverticulosis . He’s had it for years, suffers about every other month from an attack, can only eat certain things to keep it from agravating, and he’s ready to finally take care of this, but doctors don’t have any solutiosn for him. Could this be a problem? He takes a lot of over the counter heart burn medications: tums mostly. He’s wants to have major surgery to remove the part of his colon that has this Diverticulosis but he could end up on a colostomy for the rest of his life and he’s only 37.
I will also talk to my doctor about my issue but wondered if this is a correlation….
Janet says
Hi! I was just diagnosed as having a B12 deficiency and looked around online and saw that one of the symptoms is “breathing difficutly”. I have had breathing trouble since the 1st of July and it is now the 21st of July. Doctors have found nothing wrong with my lungs and im getting 100% oxygen, my heart rate is normal, and my blood pressure is perfect. I just have this feeling of not being able to get enough oxygen. Its almost like someone is holding a thick blanket over my mouth and im struggling to breathe in hot humid air at all times, and on top of it, i have a permanent lump in my throat. So what my question is, would these type of breathing problems be included into the B12 deficiency symptoms?
Elaine Garcia says
Chris Kresser May 16, 2011 at 5:39 pm
I prefer sublingual methylcobalamin.
Chris, I am the person above that was so thrilled to find out that b12 deficiency was my problem. I had so many symptoms and I could not resolve. I was taking sublingaul b12, methylcobalamin for about 2-3 weeks before I got my first injection of b12. I went home, fell asleep, actually I more like went into a nod.
Then I would fall asleep sitting up talking to my daughter. In the middle of typing an email. This happened 2x and lasted for a few days. This was the shot of cyanocobalamin. I felt so much better taking the b12 methyclobalamin sublingual. I am taking those again, but I would like to know if you would know why that happened with the cyanocobalamin? I read on message boards that this happened to other people.
Thanks
Elaine
Jan says
Hello all,
My B12 is up to 1513! And I have CIDP, they are running some extra blood work and I will be starting IVIG treatments when it all comes back torule out lupus, etc. I am looking forward to getting the use of my arms and legs back. I have been through EMG testing and my nerves and muscles are attacked but the myelin only is affected at this stage. I am so excited to get the treatments and get better. I will take my B12 shots monthly and keep checking it.
Jan
Freddd says
Jan, To recover my feet I have to maintain my cobalamin serum level at about 200,000pg/ml.
Elaine Garcia says
I just received my first b12 injection yesterday. I have been suffering from symptoms of b12 deficiency for about 10 years, going to the Doctor (s) and coming out never feeling better with any treatment they provide. I read the book “Could It Be b12, an epidemic of Misdiagnoses” and so many lights went off in my head. At this point I had severe breathing problems (that is how I found out about b12 deficiency, by doing a search for “difficulty breathing.” I ordered the book online and read it cover to cover the day it came. The book mentioned that radiation treatment for cancer could cause b12 deficiency. I had cancer in 1989 and have 4 months of daily radiation treatment.Blood work was done weekly. After I was finished my GP had me coming in for b12 shots, eventually they were monthly. He didn’t call them b12 shots so I didn’t know what they were. I never asked, I trusted this old country type of doctor with all my heart. It devestated me when he had a stroke and had to retire quickly from his practice. He sent to me a doctor that he really liked, but, sadly, he wasn’t on my Insurance plan. I felt great and figured whatever that shot was, I felt so good I didn’t need it. After being away from the b12 shots my health went rapidly down the tubes. When my doctor would see me they had that look, “oh, not her again, I really don’t know what to do anymore, look on his face. After reading about b12 I asked him about b12 injections and he said i watch too much TV. I still didn’t have any connection between the shots I received after Radiation treatment and the b12 shot I thought I might need now. Memory was one big issure with me and kept getting worse. About a week later I sat straight up in bed and said to myself, “What was that shot Dr. C was giving me…one time he charged me only for the shot because the insurance was getting fussy. That shot only cost 5.00 in 1995. I knew it was b12. I looked on the internet and found his number (it had been 15 years since I spoke with him. We talked for over an hour, what a great Doctor. He was so shocked and upset that I hadn’t been getting the shot and that not one doctor I ever saw (especially with the Cancer and Radiaiton history) never, ever thought to give me a very inexpensive b12 test. He wanted me to have my Doctor call him that instant and get me back on b12 right away! My doctor was out of town for 2 weeks. The longest two weeks of my life. When she arrived back I say her right away and I was a nervous wreck, what is she, like the other doctor, just ignored the b12 issue. Well, she didn’t. She gave me a blood test and that very same day a shot of b12. That was yesterday 6/20/11. She is going to the doctor that gave me the b12 injections and converse wtih him. I couldnt’ believe it, the nightmare was over. 10 years of suffering very poor health to the point where I would go to bed and wish I would not wake up. Yes, a simple blood test would have given an insight into what was really wrong. I do recall that in the book, Could It Be b12, the author suggests that when a Doctor sees a patient with mulptiply symptoms that can’t be resolved they should check right away for b12 deficiency. I suggest, when not check a new patient right away and check routinely after that. So much suffering could be avoided. This is day 1 and I know it will take time (10 years is a long time) but I now have hope, hope I would like to pass on to others. I wouldn’t even want my worst enemy to suffer what I have suffered these past 10 years. I will never get those years back again.
Jean says
Any suggestions or recommendations for those who don’t seem to tolerate supplemental B12 even when there is a known deficiency? I am very deficient in B12, but any attempts at supplementing (methyl and hydroxycobalamin) have caused extreme fatigue.
Chris Kresser says
Have you tried injections with the same result?
tee says
my troubles started 2 years ago i was first dx with PA then vit d deficient then told i had a stroke,then cfs/fibro i feel worse and worse but im convinced its developed into MS but since having the PA and fibro dx thats all the gps blame it on and wont do any more for me the only thing that helps me get out of bed in the mornings is hydroxo, i get it from here http://www.b12-hydroxo.co.uk/
Gp will only give it me every 3 mths so i use it weekly, do you know or think an infusion would help me?
Freddd says
Jean, That is a potassium response indicating healing most likely. The usual necessary dose for healing related potassium is 2000-3000mg per day in 3-5 divided doses. The other possibility is a folate deficiency. Usually somewhere between 2.4mg and 15 mg of Metafolin (Deplin) is needd to support the healing induced by b12. If it is the folate then next it will be the potassium. If it is potassium, then next it will be folate.
Jan says
Chris
Ok, I went to the doc today. After doing IM shots of B12, once a day for a week, then just finishing weekly for four weeks, (half way through the weekly my level was 475, up from 151 at start), and today my level was 418. All my numbers are normal, my intrinsic value is fine, folate, liver, the Methyl thing, all the numbers for all the things you have said to check are great. My CBC is perfect except for a slightly elevated chloride. My neurologist has never had this happen. She is sending me to a hematologist. Please, any comments. I think that some of the feeling is returning to my feet and hands, it could be wishful thinking, but I think so. She said one thing that was very upsetting to me, that because I had psychiatric issues, depression and upset from a cheating spouse, I may be making things worse in my head. I told her that I was offended and rejected that. Who would not be affected by a life trauma, but I am not exaggerating that I have NO reflexes anywhere in my body, have vertigo, fall down, have a terrible gait, blurry vision and a brain tumor in my midbrain. What would you recommend now please. I just want to vomit, which by the way I do quite often. I am having a colonoscopy and endocopic procedure at the same time next week as I do have a history of gastric issues, ischemic and regular colits, and due to the vomiting they are doing the endoscopy. What else? I am lost. Please respond. I know that you are busy. But I do not know where to turn. I am doing everthng that I know. The test for copper has not come back yet. lumbar punch was very high for protein, like 200 maybe? brain tumor.
Freddd says
Jan, I can tell you the most effective therapy for such numbeness I know of. You tan test the effectiveness of a 5 star mb12 in the correct qunatity by taking 50mg of Jarrow and 10mg of Enzymatic Therapy. This is 20 tablets, 10 of them larger than the others. You can likely place 6 of them at a time around the upper dental arch and every 30 minutes add 4 more. As these can be made to last 4 hours and this will be equivalent to an 10-18mg methylb12 injection you may very well feel it quickly. This will tell you what 3x10mg 5 star injectable mb12 can do for you. If you get acne then the mb12 was exposed to light and broke down to hydroxycbl and is ineffective. Further if you take 7.5mg of methylfolate 30 minuites before you take the mb12, absorbtion, utilization and retention will be improved. There are a buch of other cofactors that could be critical to healing but these will tell you how much is possible.
Jan says
Oh, and I forgot to add that she is adding copper and some other metals to my tests to see if there are issues with that trying to pinpoint my numbness.
Jan says
Hi Chris
Ok, background again, was dx in 07 with MS, but was not told I had a B12 of 362. It continued to drop. 08 it was 331, was not recorded in 09, and in 10 in was 151. Dr. was released from duty at the clinic, new dr. found the issue and began reasessing MS. Has all but ruled it out. Has me on B12 shots, they are the cyancocbalamin, 1ml, did 1 a day for a wk, then 1 a wk for a mo, just finished, and will go to monthly depending on my count next week. My count after the daily and one of the weekly was 475. I am ok for all the other areas you recommended. All of them. I had them checked. I won’t try to type them all, my hands are numb. They are worse than when I started. My feet are numb and worse as well. The numbness in my hands is simillar to tuning forks, a reverberating feeling. I fall down, have no reflexes left when they are tested, none in my knees, elbows etc, no reaction when the bottom of my foot is scraped. I cannot heel toe, etc. Blurry vision, crossed eyes to the far left or right, nystamus in left eye and eye muscle twitching when tired. Both of my eyelids had to be done to control drooping last year. Also, I do have a midbrain tumor, a glioma, which is very slow growing, near the aquaduct, that the first Dr. told me had disappeared. It has not. Needless to say, I am very upset. I have constant ringing in my ears. For the past five or six years. The lumbar punch was full of protein. The nerve conduction test, evoked potential, showed very little abnormality. I am having panic attacks. I see the Dr. next week, the neurologist. I was going to turn this over to my family dr., but I have decided to keep with the neurologist since this started there, I have the tumor to contend with and the brain surgeon is on the same floor and they confer and my family doctor has so much to catch up on and this is so complicated.
With all this info, and all my other numbers are in line, and also, I have a colonoscopy and endoscopy scheduled for next week, (I have taken prevacid for years, I have bad gastro issues), to see if there are any problems there that may have caused this B12 thing to begin with. I have spent two hosp. stays of ten days each passing only blood, once was ischemic colitis, and the other undertimed.
So, is there anything else that I should be doing? Folate, all of that is good. All the things that you say to check were, it made me feel very good that my dr. had checked them, she is on top of this.
Elisabeth says
Please Jan, did you ever check your vitamin D3…if you did not, you must. It is really essential
Jan says
Hi
I will ask her to add it to the panel she is running next week if she has not tested for it but before I do, if she has not already tested for it, what is the importance of this in conjunction to my issue?
Julee Ellison says
Hi Chris,
Both my Mom and Grandma took B-12 shots for years. After being sick a year+ ago, I recently was telling my vitamin guy about how I still have such muscle fatigue. He recommended that I add NOW B-12 (as Cyanocobalamin 10,000 mcg) to my regiment. He said to drink one tube a day for 3 days, and then one tube every other day after that.
This seems like a high amount of mcg’s to me … or am I to take that much because such a small percentage is actually absorbed by the body?
Thanks bunches!
Chris Kresser says
I prefer sublingual methylcobalamin.
Julee Ellison says
Okay. I will ask if he has that. If not, is there a place/brand you’d recommend?
Julee Ellison says
Oh, and what dosage of the sublingual methylcobalamin.?
Mark says
Source Naturals has a sublingual B12 that is methylcobalamin.
Mark says
And… Source Naturals offers it in a 1mg tablet and a 5mg tablet.
Julee Ellison says
Thanks Mark!!
Julee Ellison says
I’m just curious … I bought the 1mg, but my vitamin guy said I should be taking the 5mg. Any thoughts on this?
Freddd says
Source Naturals methylb12 was the absolutely worst methylb12 and had zero activity. It was tye only zero star brand we found. The two 5 star brands are Jarrow and Enzymatic therapy. 1mg and 5mg will all be at least 1000 tiomes better than any size Source Naturals.
Lynn_M says
Freddd,
At Phoenix Rising, I believe you said the “red dot” methylB12 was a zero star brand. The manufacturer of the “red dot”, “No Shot” microlingual brand of methylB12 is Superior Source. Is there any possibility you are confusing the name Superior Source with Source Naturals? If not, then is it possible you found 2 zero star brands?
Susinn says
I have a parietal cell antibody which has in the past resulted in macrocytic anemia from vitB12 deficiency. Do you know if parietal cell antibody is associated with other gut issues such as leaky gut or gut/brain axis issues? Do you have suggestions how to approach this other than sublingual B12 and folic acid?
Chris Kresser says
First, don’t take folic acid – take tetrahydrofolate (natural folate). They have a different effect on the body, and some studies show increased cancer risk with folic acid. Second, you have to address the immune dysregulation, which is the underlying problem. That’s an involved process.
Jan says
I am in NC. I need to dig out the recent blood tests. I am not sure if folate was part of it. I know that the doctor checked my potassium because my legs and arms hurt so badly, especially at night. She was concerned that I was having a side affect to the B12 injections. But it was fine. I need to see what was looked at on the blood panel that was ran.
Freddd says
Jan, I’ll lay it out for you. I have terrible spasms and a whole lot else from low potassium starfting at 4.3, which on the scale from 3.5-5.0 is mid-scale. On the scale from 4.0-5.0 it isn’t low either. Lot’s of people start at 4.2-4.3. Further pain, not pain from spasms, can be casue d by folatye insufficiency or paradoxical folate deficiency. Start titrating methylfolate until the pain is relieved. Thsi would be a far more general and inflammatory pain than potassium. Also, IBS, cracking skin around the fingertips, sores at the corners of the mouth, allergies, asthma, MCS, nausea, and so on might flair with low folate. Most need betrween 1600 and 15,000mcg to get rid of all folate deficiency symptoms depending upon how they react to folic acid and veggetable folate. The only kind of b12 likely to do you well is methylb12 and adenosylb12. There are 3 brands of Dibencozide (adensoylb12), one with folic acid. There are two 5 star brands of methylb12, Jarrow and Enzymatoic Therapythat produce more reliable results than injections. These will make potassium drop rapidly most likely becasue healing starts immeditatly and potassium drops by the 3rd day whern that happens.
mary ann says
Jan,
Have you been tested for MTHFR? You might be deficient in other B vitamins such as folate. There are prescription forms of methylfolate (the activated form) such as deplin, metanx, and cerefolin. Taking methylfolate in conjuction with the b12 might help your neurological symptoms. You might try googling “MTHFR treatment”, or if you are in the WA state area there is a fantastic doctor named Neil Rawlins that treats B vitamin deficiency and MTHFR. You can even do a google search and find his MTHFR protocol online…
Kelly says
I agree with everything Mary Ann says, except for one thing — Rawlins is not a doctor…he’s a patient who went through similar issues related to b12 and methylfolate and MTHFR problems. I’m looking into that myself…after 13 years of worsening CFS.
Alex says
Here is some evidence presented that cyanocobalamin is not poorly absorbed:
http://www.michaelmooney.net/Vitaminb12comp.htm
Any truth to this?
gregory barton says
Mooney’s website is remarkable. No doubt, he is a director of a supplement company and recommends his own products. But his depth of research is compelling.
Jan says
Chris
I saw my PCP yesterday. He did not seem very concerned with the deficiency. He said that I could do injections or subingual. He had the same results with both. I think that my biggest concern is my advanced neurological symptoms. Perhaps he is not figuring that into the equation. He is an excellent Dr. and said he had some research to do. I have always trusted him without qualms. But he did not really seem to see the need for the B12 type that I was pushing for. I feel that with my level on up to 457 after giving myself injections every day for a week and having done it once a week for two weeks before that level was attained says something about my body still not taking the B12 up properly.
Bottom line, how long before I would just die if no one took this seriously, or became paralyzed or fell into dementia? I am just worn out with it all. I am tired of dealing with it. I am ready to lay down.
Elisabeth says
Jan, please, take a high-dosage of vitamin-D3. As soon as posible. Even if B12 and folic acid and B6 are important to you, so is vitamin D.
gregory barton says
What to do in a borderline case? I just got the result: 465 pg/ml, which is above the 450 minimum of Pacholok and Stewart (cited above), but below the 500 minimum that you referred to in the case of Europe and Japan.
What is the best option:
i. eat more liver?
ii. take a B12 supplement?
iii. do nothing and test again in a year?
Thanks.
gregory barton says
This website claims that optimal is above 800:
“B-12 lab test: Measures an essential vitamin, B12, which can be low in hypothyroid patients due to low stomach acid. You are looking for an optimal B12 lab result at the top of the range. It is NOT optimal to simply be “in range”. If your range is similar to 180-900, a healthy level is 800 or higher. In the 500-800 range, you can benefit from taking B12 lozenges, specifically Methylcobalamin. It has been shown in studies that patients with labs under 350 are likely to have symptoms, which means the deficiency is very serious and has gone on for a few years undetected. Lab ranges are much too low for B12…in Japan the bottom of the range is 500.”
http://www.stopthethyroidmadness.com/lab-values/
Chris Kresser says
There’s really no support for that number in the scientific literature. That said, there’s little risk of toxicity with B12 and little harm that can be done by supplementing with methylcobalamin even if you have normal levels. And in fact, I have some patients that do have levels of 800 or even higher that still benefit from supplementing. Placebo? I’m not sure, but since there’s not much risk I’m not concerned.
Larry says
Conventional Wisdom says that if you’re over 50…you’re probably B 12 deficient.
So….I’ve taken a 1,000 mcg lozenge, 4-5X a week for a couple of years now.
I had a recent blood test and my B 12 level was a bit high.
It came in at 1165, which is a bit over the upper level of 1000.
No health issues here other than some reflux issues.
I’ll be going for another B 12 test in June.
That’ll also include a complete blood test.
Until then I’ve stopped taking any more additional B 12.
Other than what’s in a multi.
It’s interesting how everyone I speak to on this, hasn’t seen this before.
High levels can be a sign of serious matters I’m told…but…how high ?
Can the high level here be due to a daily B 12 supplement ?
I’m the oddball on this one.
As “CW” says you can’t take too much B 12.
Maybe I’m the 1% who can.
I’ll know more next month I guess.
Jan says
This is all very confusing and scary to me. I have no idea what kind of Dr. to see. I can remember my tongue losing all the coating on it and turning bright red back to 2000, and no one knew why, as well as the corners of my mouth cracking and being sore. I know now that this could very well have been B12. Now, with my B12 level at 151, and after giving myself shots of cyanocobalamin, 1 ml daily for a week, then once weekly for a mo, it was at 457 after two weekly shots. What does that say to you? I think that it should have been much higher? What should I be doing, what kind of dr? Do I go to a hematologist, still to my MS neurologist, my Primary care, who? I am just now finding you, and this site. I have lost all feeling in my feet and most of it in my hands. I have these large lumps that have arisen on the tops of my feet, that had turned dark brown and the skin was thickened six years ago. These lumps just came now. Why? I lost my legs today, and fell. I am confused, went through a horrible confession from my spouse of almost forty years three yrs ago, and I am angry. If this could have been prevented by the simple intervention of treating my B12 deficiency, and I would have my feet and life, my God. I see the three kinds of B12 and it seems I am taking the wrong kind? Am I spinning my wheels? Am I just going to keep going down, end up dead? What stage am I and how is that determined? Is 151 a really low number? I really do not like liver, but should I be eating that? Where do I turn? I need help desperately. Is my life over at 59.
Elisabeth says
Jan, I think it´s important that you also take folic acid/folate and B6 with your B12, for your MS, you must take vitamine D3, mega-doses.
Jan says
Thank you for replying Elisabeth. It seems that the lumbar ruled out MS. Not 100% because there was protein in the punch but a huge amount. I have a brain tumor in my brain stem, one that the prev. MS doctor told me was gone. On the report it says that it is there, in the midbrain, located near the aquaduct but not clogging it. Well, it may be changing. See when they ordered the punch, I asked them, are you sure since I have this thing on my brain and you are not supposed to do that to someone with that. The brain surgeon said, no, it is ok. Only when there is one that is causing pressure or blocking the flow. Well, he as also saying the place was not a glioma (tumor) but a hamartoma (malformation from birth) and not a problem. Well, he backed off of that when he saw the large amt of protein. He said it is a glioma, that would account for the protein. And, may be it is affecting the flow. My God. This is like being on a horror show of “we said this, but we really meant this” and all your enemies are in the audience laughing their asses off. It does not stop. When I had ischemic colitis in 06, I begged to find out why. That is not a normal colitis. Part of your bowel dies for a reason: clotting disorder, obstruction to the bowel, drug use, etc. I do not use drugs, so we needed to find out. Everyone was like, oh who knows. Ischemic Colitis can be a so so thing or serious. I was in the hospital for ten days, passing nothing but blood for at least two, and 9 inches of my bowel was not rejuvenating. It finally did or I would have had to have it removed. I could have died. I had a serious case of it. This is all tied together. I have been on Prevacid for years, is this why I have B12 def? I have been giving myself injections of betaseron for four years. What has that done? I am just sick over all of this.
gregory barton says
No. Your life is not over at 59. But you need to find a doctor, or some caregiver, who can explain what’s going on clearly and whom you can trust. Keep shopping around till you find one.
Chris Kresser says
Jan: at 151 you really need B12 injections. Preferably with methylcobalamin if you can convince your doctor to use that (tell him/her studies have shown it is the best absorbed form with the lowest toxicity). Yes, 151 is low and you need to take action to bring the level back up. Another option is sublingual methylcobalamin – but I would highly recommend you do this under a health care practitoner’s care. You need to find out WHY your B12 levels are so low. If you have an absorption problem like pernicious anemia, which is not uncommon in the presence of other autoimmune diseases like MS, you will have to be on injections or at the very least high dose sublingual B12 indefinitely. I’d say go visit whichever of the docs you listed that you have the best relationship.
Jan says
Chris, I got back the results of the lumbar punch today from my new neurologist and I do not show that I have MS, as the Dr. she replaced had diagnosed said. To complicate this even more, I was shown on MRI in 2006 to have a lesion on my midbrain that had grown from a previous MRI done in 2004. This is what started the ball rolling. When I had breast cancer in 04 I owned a small investment company. I had to close it but I had felt that I was not on top of my game for some time. To reenter the corp work environment at 51 was daunting to say the least so I had a full neurological work up. There was a problem in the brain stem at that time but they did not report it to me. After working for two years and struggling both mentally and emotionally, a Dr, ordered a MRI and the place had grown a bit and that was when I found out it was even there. It sent me to a brain surgeon at the hosp. where I ended up with this MS clinic that I am still seeing. He felt it had not grown but rather the MRI was slicing thinner. And that it was just showing larger. He saw spots on my brain, sent me to the MS doc. He diagnosed MS with the 261 B12 level in front of him and told me that the brain stem issue was totally gone every year since. Had disappeared altogether.
Well, it has not. The neurosurgeon thought it was a hamartoma, something that is a malformation from birth, and not a glioma. However, my spinal fluid was full of protein so now he says it is due to this brain stem “glioma”. So, seems like I have a tumor on my brain stem,, worst place ever, and a B12 deficiency. I am seeing my PCP today at 3. What am I? When this started, my tongue would get thick, I could not speak correctly, like I was on drugs, could not spell, word find, emotionally I was broken totally. Could not train for new things and retain them. Yesterday I collapsed totally, and I can hardly walk. I am in intense pain in my legs at night and my entire body hurts. Am I doomed to this thr rest of my life because I was not treated in time? What stage would you think I am in? My red cells seem ok, there has been a problem or two along the way. After my breast cancer surgery, they were way out of whack and taking iron for 6 mos corrected that. They said I lost too much blood. I am giving myself injections. But with the other B12, the least desired one. I am going to take your recommendations to the dr. today. I also feel that there is some liability on behalf of the first Dr. who ignored the B12, and there are other issues with him. There is a reason he is no longer at the clinic. The new dr. recommended that I may want to go to the Mayo Clinic also.
Jan says
One other question, if you are taking/giving yourself injections of B12, whichever kind, daily for a week, then have done it weekly for two weeks and have your blood drawn, knowing that it was 151 or lower when you started (the 151 was in Dec. I started the injections in April) I think that the doctor told me that she would expect to see it abnormally high, like in the thousands, initially instead of 457. Is that correct?
Kelly says
Jan, it’s my understanding that different folks respond to b12 injections in different ways — and Chris is right — you need the methylcobalamin, preferrably without preservatives. You can get this at compounding pharmacies, but need a prescription from a doctor.
I just read a study where a 67 year old woman with ‘white matter’ showing up on her MRI’s had complete resolution of her symptoms with high-dose b12.
Google “B12 deficiency is commonly misdiagnosed” and you’ll pull up lots of information and hope.
Best regards,
Kelly
Kelly says
I would also try to get a second or third or fourth opinion. Clearly the injections aren’t given frequently enough, and again, aren’t the right form of b12.
Jan says
Hi all,
Well, there have been developments since I last posted. My Methyl whatever is fine, I have been tested for everything that has been discussed on here. I have not taken too many or much prevacid, I had an endoscopic and colonoscopic exam with biopsies, no celiac, chrons, cancer etc. We are leaving no stones unturned. My lumbar punch came back with a protein level of 123. I have not had my B12 checked again, I am doing that again tomorrow, and I am on once a week again, plus I am going to do a 24 hour check for heavy metal poisoning. I am not as concerned about the form of B12, I am concerned with my levels getting at least to 500 and not stopping progression. So, herein lies the new information.
The brain surgeon that I saw in 2006 and who did not seem concerned with the brain stem tumor, but preferred to consider it a hammertoma, a thing more like a collection of surrounding matter and not a growing entity, had to step back with the high protein and is now sayng it is a pilotic astrocytoma. However, this is a pediatric tumor and rarely in younger adults and is cured by removal. It is slow growing but gets large. Mine, being in the stem, mid brain area, would not be a great candidate for removal, but should have been watched more carefully if it is what he is now saying and I have been lucky. I am going to Duke for a second opinion. He said he would see me every 18 mos.
Tomorrow I see a new Dr.,, a neuropathic Dr. to be assessed for CIDP. The high protein in my punch, along with the advancing numbness and neuropathy, it is halfway up my calves, and my hands that have been more like tuning forks are now becoming numb, I am getting scared. Yes, I have a B12 issue but I have much more. It makes sense. The high dose of prednisone helped me last fall, and that would be correct for CIDP. But., this disease is an autoimmine disease, a much worse case of Guillene Barr, incurable, not likely to cause death but unchecked or treated it can. It causes paralysis so my goal at this moment in time is stop this now. IVIG is the treatment thatI am assuming that they will try??? and then blood change out? I have told all of them, no more dye of any sort will go into my body and this can be brought on by vacinations. I was told by the MS doc to get each and every one that you can think of, all flu, shingles, any thing you can think of.
Scared??? hell yes. The whole game has changed. When my b12 is checked tomorrow I will post what it is.
Jan
Dr. X says
Jan – your story is heartbreaking, though I did not read every entry. I’ve been in a similar situation… lost everything… figured out my own problem after no help from 30 doctors in 5 years. The thing you have to stop doing is seeing mainstream, Western, allopathic doctors. I don’t care how “expert” or famous they are… the more elite, sometime is not a good thing. You want to look for a good integrative medicine doctor, or environmental medicine doctor http://www.aaem.com, or even a naturopath. A holilstic approach is the only way to thrive with or overcome these chronic illnesses… not looking at it like a disease, as a singular deficiency (there’s more to MS than just B12 for sure), and especially as a drug deficiency. My neurologist thought I had CIDP and didn’t offer me any hope. I probably did have it, but a label didn’t tell me WHY I had it or how to get rid of it. Prednisone would have been horrible for me (as it is for most people and only covers up symptoms at best), as I found I was suffering from toxic mold poisoning, which does demyelinate (and yes does cause MS and CIDP and numerous other things). Keep looking for a deeper cause, but find a GOOD doctor from recommendations… be willing to travel. I was driven 11 hours to the doc I found online, when I was too weak and neurologically impaired to drive, or to even stay awake during the drive. And you are right… do NOT get any more vaccines! And keep your spirits high, as that can be more healing than any drug and sometimes nutrients (sounds nuts to some, but there are biological reasons behind how our thoughts cause illness and how our mental state can help to cure disease). Remember our bodies want to heal… we have to remove the barriers, not add more barriers (like vaccines, drugs, negative thoughts, stress). Best of luck to you!
Jan says
Chris,
I know that we get a lot of folks here with a lot of varying issues and complications, each different in it’s way. I get confused by recommendations and know that I need the guidance of my neurologist and I feel fortunate to have one that is on board. I do not have pernacious anemia, all the concerns with different blood issues that would affect my abilty to absorb B12 have been assessed from taking prevacid too long to my small intestine issues (had colonoscopy and endoscopy with biospsies). I was tested for the issues for MTHR, I mean she has left no stone unturned. But, when administered B12 shots and my levels reached 1513 and it was not stopping the progression of the symptoms, I did not expect it to correct them right off, she knew more was at play. I have no reflexes, ringing in my ears, blurry vision, exceptionally bad ataxia, just so many nasty symptoms. I do not have MS, my spins is free from any sclerosis, but my nerve conduction, and muscle conduction indicate an issue. If there were no brain tumor when they did the lumbar punch and found the high protein, I would be being treated for CIDP, I feel certain. The brain stem tumor in my mid brain has just complicated everything and truthfully I am so sick, I just feel like giving up. Sitting around waiting for the special blood work that the neuropathic doctor is doing I am so disheartened. I hope so much for the B12 to be it. As to why I am not uptaking B12? I wonder if anyone will care. Sometimes I feel like I am just sitting around waiting to die. I did make an appt fir a second opin on the brain tumor. But I do not want the records from the first dr. reviewed. How is that an impartial disgnosis? I just want to start treatment and get better or just have them all leave me alone and let me succumb. I am pretty depressed.
Jan says
oh and we are waiting for the heavy metals test results too. No stone unturned.
Rose says
Jan,
I would strongly recommend you get tested for gluten intolerance. This is an insidious condition which masquerades as over 300 symptoms and medical conditions. Google it, because there’s far more to it than I can say here. I have to say though, that gluten intolerance tests are notoriously unreliable. A small intestinal biospy might show a negative result, but if the damage in your gut is patchy, it could easily be missed. Gluten is making us all sick but sadly it will take decades before enough people recognise it. I noly discovered that I am gluten intolerant in my late 50s and have a stack of medical conditions I need never have had to suffer from if only I’d known about GI. I’m not sure if links are allowed in here, but hopefully the ones I’m putting in will be.
http://www.celiac.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders
http://sites.google.com/site/jccglutenfree/
Very best wishes
Ernie says
Dr. Kresser;
I was told about 4 months ago I had a severe B12 deficiency and was give a prescription to start B12 injections right away. My diagnosis so far is thrombocytopenia and will get retested in a few weeks and results soon to follow. What do they mean by nerological and mental problems due to the B12 deficiency? Also, I have been having pain in my right leg just below the knee and it feels like bone pain and my veins are popping more frequently… can this be related to thrombocytopenia?
Ernie
Chris Kresser says
B12/folate deficiency is a potential cause of thrombocytopenia, but also of neurological and cognitive problems because of the role B12 plays in the central nervous system. Yes, your leg symptoms sound like they may be related.
Jan says
I, unfortuately, am a prime example of a person who has been a victim of B12 misdiagnosis. I was diagnosed with MS and the Dr. had a level in front of him for me of 261. The next year, the level shows at 232, for some reason, there is not a reading for the next year, but Dec of 2010, which is the fourth one, my level had dropped to 151, and a new Dr. replaced the orig Dr. at the clinic I attend. She immed. caught this. By this time, I have lost all feeling in my feet and hands, all of my reflexes are gone, knees, elbows etc, my cognitive processes, awful and intimate life is shot. I lost my career as a finan. planner, my life may very well be forever changed as this. I gave myself B12 injects every day for one week, once a week now for a mo, and will go to monthly I assume for life. My symptoms, thus far, have gotten worse. I am in immense pain. I understand it may be 3-6 mos before I will know if this will turn around my symptoms, but I do not have a good feeling. I have severe gastro issues, have been hospitalized twice during this dance passing blood. It is like no one talked to anyone else. They are doing a full work up with a colonoscopy and endocopy in two weeks, but damn it all, I begged to find out why I was stricken with ischemic colitis suddenly at 54. No one cared. I never knew about the B12. Even though the Dr who left was testing me for it, when I got copies of my blood, it was on a seperate form and not provided, but with our system showing normal ranges of 200-900, it would not have raised a flag. That needs to be changed. I am just lost now. I am 59, lost all my securities licenses, am awaiting the results of a lumbar punch to rule out MS totally, and see what my job’s disability insurance will do. I am set to lose everything.
Helen says
Jan – Have yourself checked for gluten-intolerance. Better yet, go on a gluten-free diet. All of my malabsorption issues stemmed, IMHO, from gluten ruining my gut. I’m still dealing with some neuropathy, memory problems & muscle spasms but they are clearing up after only 3 months on B12 shots. BTW, I’m injecting cyanocobalamin since methyl is hugely expensive, 500mcg every other day. I ordered the syringes & B12 off the web. I don’t care what my blood tests show now since I’ve gotten a lot better in 3 months. Sometimes, though it seems like I’m regressing, then a spurt of progress. Don’t lose hope. Recovery isn’t in a straight line, it’s a jagged line.
mary ann says
I found some studies that link B deficiencies to autism and posted them here…
http://findingtherootcause.blogspot.com/2011/05/mthfr-and-autism.html
mary ann says
B12 shots are among the most popular biomedical treatment for autism. Another thing to consider is gene polymorphisms such as MTHFR that affect B vitamin metabolism. People with MTHFR have to supplement with activated forms of B6, B12, and folate (not folic acid). Most people with the diseases you listed at the top have MTHFR.
James says
When do you trial and introduction of safe starches for someone on the GAPS diet. Would you just have them on it for a few weeks then introduce it? Also, would it be a good idea to start out with the less dense starches (calories wise) such as yucca, rutabagas, parsnips, etc, for a while before trying the denser starches like yams or white rice?
James says
And wouldnt it be harder to set up the proper flora levels in the gut including starch in the diet ( I thought that is why she cuts it out)? Or do you only include starch after a certain amount of time has passed and you believe that the flora levels have normalised and some gut healing has taken place? Also, are rutabagas GAPS legal, I know turnips are.
Inge says
Great post!
My Mom, now 78, was low (very low) on B12 two years ago. It was diagnosed via lab test, but the doctor did not thought B12 would be of much importance. He was only interested in the cholesterol levels (LDL o. k., HDL triple of normal) and put her on statins, like many years before. For luck there is the internet and I just looked up all lab results and became aware of the low B12 level. My mom took same information to the doc and he informed himself and she got treated by a row of vitamin shots. The difference they made is almost not to believe. My mom was depressive and sick in many ways and the change started only after a few shots. No she is active, interested in live, started sports and having fun again. By the way, she dumped the statins.
Sharon says
Chris, would you suppose a serum B12 level of ~300 *could* cause deficiency symptoms?
Your blog = great stuff, per usual!
Chris Kresser says
Absolutely. The studies are clear on this.
Jen says
Hi, I have an immunologist who uses Metanx for B12, B6, and folate. She has been using it for years with good results. It is supposed to provide the vitamins in their more active forms. Not sure about it’s effectiveness, as I didn’t have my B-12 levels tested, but my homocysteine levels have always been fine. Hope this can help someone and that it’s a good product.
Dr K says
The methyl trasnfer issue is a large one and you have touched on it here a bit. I think your may have also failed to mention to adequately close the B12 gap it requires high levels of vitamin C as a cofactor in many of the reactions. High enough that oral Vitamin C often does not cut it. Somehow I think you know it but once you go back and look at the pathways biochemically it becomes a real rate limiting cofactor in the real folate issue.
Stephanie Alexander says
I am confused — if there are no vegetarian sources of B12 and methylcobalamin is a naturally occurring source of vitamin B12, how can it be Vegan? I think I have missed something…?
Dan says
You are confused because Chris wasn’t being honest. B12 is produced by bacteria. B12 supplements are manufactured without using animals and is a more reliable source than eating contaminated plant-foods (soil has b12, feces have B12, sewage has B12…).
Just grab a vegan b12 supplement or eat b12 fortified foods (assuming you don’t have a GI problem), and you’ll be fine.
simona says
Unfortunately, methyl and hydroxy cobalamin are hard to find as they are more expensive and manufacturers don’t put them in multis. How can one find out if they have methylation problems?
ApotheCarey says
Take the MTHFR gene mutation test if you like! Also, Jigsaw makes a B-complex that was recently improved to include methylated forms of folate and b12 in one place. Chris, do you think someone with the mutation and digestive issues would have trouble absorbing this? I like that it’s all in one place, but I sometimes add a Pure Formulas Methyl B12 Plus sublingual to the mix (has methylated folate and B12 and that’s it). However I don’t like that it has Metafolin, made by Merck, who is now, according to a natural healing blog, trying (via the FDA and a rider in legislation) to get a monopoly on methylated folate and prevent supp co.s from using the term “folate”. There’s a petition out there about it.
James says
Thanks. Just posting on various sites I have numerous people telling me that low carb paleo eating (or GAPS diet eating) causes stomach problems/digestive, food allergies, messes with cortisol, etc. Is there any truth to that or for the most part has it helped those you use it on?
My problem now is more so sluggish elimination/difficulty going, some food issues (bloat and water retention), etc.
Tyler says
Great post! My wife has B12 deficiency despite the fact that we’ve been eating paleo for one year. We’re not sure what the cause is, but her doctor just said to take a B12 supplement. I’m worried it could be a symptom of a more serious issue.
Chris Kresser says
Always good to do that detective work. If she has pernicious anemia, a B12 supplement isn’t going to do a thing (she’d need injections). That’s also why re-testing is so important.
Tyler says
What would be useful detective work for people with confirmed B12 deficiency? A Schilling test? A blood test for gluten antibodies?
James says
Hey there Chris!
Sorry to make this comment here but I figured it would never get seen if I made it in the thyroid-gut article.
You say to restore gut integrity you put your patients on the GAPS diet. This is not necessarily a low carb diet, but from the food choices and how it is set up it generally turns into a low carb diet for most (probably 100 grams or lower). Would going on the GAPS diet worsen issues in someone with already high cortisol throughout the day? Would you advise fixing the cortisol first, or do you need to fix the gut before you can hope to fix the cortsiol?
Chris Kresser says
It’s a bit of chicken and egg, so they need to happen together, but I generally think fixing the gut is the highest priority.
Peter says
Theoretically, methylcobalamin may participate in the methylation of inorganic mercury released from dental amalgams, thus increasing its absorption in the mucosal & digestive tracts. This effect may vary according to oral pH and bacterial type/count.
I have dental amalgams and get frontal headaches after a couple of weeks on 2,000mcg sublingual methylcobalamin daily. Coincidence?
Cris Casals says
Hi Peter,
Are you still taking the methylcobalamin and do they still cause you to have headaches?
Stephanie Alexander says
Thanks for this great post. I had a sub-lingual B12 supplement and read that it was vegetarian — likely not going to help me at all.
I have been searching for a B12 with Folate since they seem to both be required and not abundant in the diet. However, all I find are supplements with Folic Acid.
Any suggestions?
Chris Kresser says
Designs for Health has Super Liquid Folate and there are many brands of liquid B12 with methylcobalamin. I haven’t found one that combines the two in sufficient doses yet.
Tony says
Dr. Kresser,
What dosages should vegans and vegetarians be taking as supplements? I currently market a twice daily NSF certified multivitamin containing 22.5 mcg of Vitamin B12 (Cyanocobalamin) and a 0 sugar, 0 carb low calorie energy drink containing 294 mcg of Vitamin B12 (Cyanocobalamin). Are these products suitable to help round out a vegetarian diet?
Chris Kresser says
500 – 1,000 mcg per day of methylcobalamin is a good dose.
Anthony DiSante says
Hi Chris,
I’ve heard you mention the frozen-liver-pill idea a few times now, both on podcasts and on your blog. Can you talk about the quantities that you recommend, i.e. how many grams or ounces on a daily/weekly basis?
Thanks!
Chris Kresser says
I recommend people eat 3 oz. of liver 2 times a week.
gregory barton says
If one isn’t partial to straight liver, pate, fois gras?
MLM says
I’m pregnant and wondering if I should cut down my dose to only 3oz per week.
DJ says
Hi Chris,
Thanks for writing about this important topic. I have read the book you referenced “Could It Be B12?” and if I remember correctly, the authors pretty much concluded that serum B12 was not accurate and recommended urinary MMA. I remember being alarmed that my B12 level was so high (887 pg/ml), but then thought maybe it was because I had taken a multivitamin containing B12 the day before the test.
Two questions:
(1) Do you agree that serum b12 is not really valid becauses it does not indicate whether it is actually being absorbed and utilized in the body?
(2) Do you agree that everyone should stop taking supplements for 2-3 days before having bloodwork done, so they don’t affect serum levels like b12, iron, etc?
Love this blog!
Chris Kresser says
No, that wasn’t their conclusion. In fact, they said that B12 is accurate but the reference range is too low. They suggest that if the cutoff of 450 or 500 pg/mL were used, urinary MMA, homocysteine and HoloTC may not be necessary. However, they also mention that they would treat if urinary MMA and/or homocysteine are abnormal but B12 is normal. In my practice I’ve been running urinary MMA, homocysteine (a useful marker for other reasons) and serum B12.
Alex says
Hey Chris,
So it seems like even when eating a paleo diet there are many nutrients one can still be deficient in, such as Vitamin B12, Vitamins A/D/E, selenium, magnesium, iodine, etc. That being said, why not recommend a well-rounded multivitamin for most people as insurance? I know you’ve talked about the dangers of high dose multivitamins and antioxidants, but it seems like a basic one or two a day multi would have far more benefits than potential risks. Your thoughts?
Sandra Brigham says
Yes, this plagues me every day. Should I take that B12 sublingual and the multi concurrently that my MD emphasized had to be taken with a B12 for the B12 to be effective now that I’m Paleo/Archevore. I ditched the BCP as a possible cause, and to go Paleo, even though GYN swears BCP doesn’t cause B12 deficiency. Gave up the Vit C but kept the magnesium though. It gets very confusing – TMI!
Chris Kresser says
I think Nutrient 950 with vitamin K from Pure Encapsulations is a good choice. It’s one of the few I’ve found that has the ratios and amounts of each nutrient that I’d recommend.
gregory barton says
Do you recommend 4 to 6 capsules per day, as the product information requires?
Do you have any one per day alternative?
Would you recommend the variety ‘without iron’?
Chris Kresser says
Because iron is a pro-oxidant and in excess quantities can be dangerous. Most people get enough if they’re eating meat. Dosage of 4-6 capsules is fine.
EL66K says
Chris, have you heard about the Fredd protocol? It was made by a guy suffering from severe b12 deficiency, and it apparently has helped a lot of people. He talks about specific brands of sublingual methyl-b12 being vastly superior to others in terms of absorption (specially if you use them the right way), and about the need for other nutrients to be obtained in tandem for the therapy to be most effective. I personally tried one of the brands he recommended (jarrow’s) and my b12 got above 2000 pg/mL in a few weeks. The doctor got scared.
Here are the links: http://forums.wrongdiagnosis.com/showthread.php?t=62327 http://forums.wrongdiagnosis.com/showthread.php?t=9948
The second one was actually started by Sally Pacholok.
Also, you didn’t mention one of the conditions in which b12 has been shown to be very helpful: peripheral neuropathy. There are many articles in pubmed about it helping people with that condition, mainly diabetics.
Chris Kresser says
A B12 level of 2000 is safe and nothing to be concerned about. Most experts suggest 500 – 2000 pg/mL should be the target range.
Rose says
Hi Chris…….Can you tell me what 1369 pmol/L is in pg/L? Thanks.
daz says
1369 pmol/L = 1855 pg/ml
(1369 ÷ 0.738 = 1855)
http://www.cdc.gov/ncbddd/b12/history.html
Rose says
Thank-you daz!
Chris Kresser says
SAM-e, L-carnitine and Alpha-lipoic acid may be helpful. But I’m not convinced they’re necessary. It’s relatively easy to determine if treatment is working: you just re-test.
EL66K says
Sure, Chris. I said said the doctor was scared, not me! Another probably important thing to take from the protocol in the links I showed you (more than the use of ALA or SAMe, etc.) is that the natural or coenzymated versions of the b-vitamins (methylb12 in opposition to cyano-b12, folate in opposition to folic acid, P-5-P in opposition to pyridoxine, etc.) are not only safer, but also more usable by the body (http://www.thorne.com/altmedrev/.fulltext/6/1/87.pdf). Though, you probably know that already.
Heidi says
So glad I found your website, Chris.
My question is, would it be Ok to just supplement for awhile and note if any of the symptoms went away? Could you comment on Elisabeth’s comment about people who’ve had a stroke or brain surgery.
Thank you for all of this great information!
Chris Kresser says
Yes, supplementation with B12 is safe since toxicity is extremely rare, especially if you avoid cyanocobalamin. Unfortunately, some damage from B12 deficiency is irreversible.
Bridgett says
Why do you say “if you avoid cyanocobalamin?”
I ask because that is (currently) my main form of B12 supplementation.
Chris Kresser says
Because in the rare cases that B12 supplementation causes a negative reaction, it happens with cyanocobalamin, and because it is the least well absorbed form as I pointed out in the article.
Sandra Brigham says
I didn’t understand your sentence – some word is missing I think. But since I have been using for cyanocobalamin for 3 yrs and have some residual foot tingling I guess I should seek out the methyl B12 supplement version.
Chris Kresser says
I just updated the sentence.
Sandra Brigham says
Well, on 5/23rd I started using methyl B12 and ditched the cyano B12. After 17 days of using methyl, the neuropathy in my left leg and foot are all but gone! I now only feel a slight tingling sometimes but the numbness/pain are gone. I figure the slight tingling will be gone in a few weeks.
Thank you so much for this wonderful post. I just can’t believe my MD never suggested mention methyl to begin with.
Bridgett says
How can the form which is least well-absorbed, also be the only culprit in toxicity?
Monte Diaz says
It actually makes sense Bridgett. Cyanocobalamin is an unnatural synthetic version of B-12. Our bodies may not be fully adapted. Therefore, in addition to not being absorbed well, it also may cause negative reactions in what little is absorbed.
I liken this to the situation with trans-fats: Where they impersonate normal fats and when the body tries to use them (put them to work) they act dysfunctional and reek havoc.
Of course, I’m just a layperson and may be wrong on all of the above.
Vicki Glasbrenner says
Cyanocobalamin is the most commonly supplemented form of vitamin B12, but you might be surprised to discover that this form of vitamin B12 does not actually occur in plants or animal tissues. In other words, outside of the chemically synthesized cyanocobalamin that you encounter as B12 in most vitamin supplements, you would be extremely hard pressed to find this compound in nature (in fact you would not be able to find it). As the name implies, cyanocobalamin contains a cyanide molecule. Most people are familiar with cyanide as a poisonous substance. Although the amount of cyanide in a normal B12 supplement is small and from a toxicology point, viewed as insignificant, your body will still need to remove and eliminate this compound. Lovely.
Greg says
I agree on the cyanocobalamin. Not generally found in nature. It was an artefact of the original purification method of vitamin B12. Many, many studies have now shown that it is not used anywhere nearly as effective as adenosyl and methyl cobalamin. Furthermore, if your intracellular glutathione is low you can’t reduce the Cobalt atom to remove the cyanide. Thus, in many people who have been B12 deficient for years the CN-Cbl is not very effective, if at all.
Freddd says
It’s also the least effect most worthless form of cobalamin that at best will keep somebody crippled and limping along.
Simon says
Chris, brilliant stuff as usual!
I see so much conflicting B12 data all over the web and I have concerns about my own B12 intake! For the last 2 years I was a Raw vegan only and started to get really weak & tired, then moved to about 75% raw, now eating cooked yams/sweet potatoes a little white rice and daily I eat either sardines or mackeral.
I was told I need 10mcg of B12 a day, without consuming red meat or liver etc am I ok on a fish source only for B12?
Your thoughts kindly appreciated!
Keep up the great work!
Simon
Chris Kresser says
Simon: 10 mcg is an inconsequential dose of B12. 500 – 1000 mcg in methycobalamin form each day would be a more suitable dose.
Elisabeth says
B12 is stored in the liver, I always thought about it as something from old, real old times, when you coluldn´t be sure of good hunting everytime. So, when starving times one wouldn´t be without B12.
B12 and folic acid are both known to have good effects in psychiatric problems, but in mega-doses it´s called ex juvantibus and was widely used before we had so many diffrent drugs, even thyroxin i mega-dosis was used. That I find very interesting.
And Simon…you really need to store up a lot of B12 in your liver.
Simon says
Wow! Chis, as I said so much info out there you don’t know where to turn! When I followed the Raw vegan diet, I was told at the time just have some raw honey which has had a few bees or other insects fallen into it, you won’t taste them and you’ll get all the vitB12 you need! Damn was I so naive!
Thank you.
Simon
Anonymous says
Chris – as always…you rock!
Adam says
Hi Chris,
I’ve relatively recently found your website and have been enjoying your posts and podcasts. In this article you say that Autism Spectrum Disorder can be caused by B12 deficiency. Do you have any proof of this, any studies you can point me towards? Are you implying that it can be a deficiency in the mother during pregnancy or some deficiency in the infant that can bring it on?
As someone diagnosed with Aspergers I must say I’m interested but also skeptical. Autism has a clear genetic component and I while it is plausible that an environmental factor can trigger a genetic predisposition to it I doubt there is any firm evidence out there that proves that B12 can be a cause (or anything else at this stage).
Thanks for all your great work, but I need more convincing on this one.
Cheers, Adam.
Chris Kresser says
Adam,
There’s an entire chapter on the possible B12-Autism connection in the book I referenced in the post (Could It Be B12). It is well-established that maternal B12 deficiency causes developmental delay, hypotonia, failure to thrive, reduced IQ and mental retardation in the mother’s offspring. Young kids with B12 deficiency exhibit delays in speech, language and social development, as well as problems with motor control. The signs and symptoms of B12 deficiency are very similar to those of ASD. There are anecdotal reports from ASD specialists that B12 injections improve symptoms in a significant percentage of ASD patients. One pilot study found that the rate of elevated urinary MMA in autistic kids was 20%. Granted, this is not proof of causality nor would I or the authors of the book claim that B12 deficiency is the sole contributing factor to ASD (that’s ridiculous, of course). But there may very well be a connection, and it’s worth pursuing further IMO.
Adam says
Thanks Chris. I’ll look into it.
mrs marie cooper says
hi chris my name is marie im a 39year old mother of 5 children and i have recently been told i have a b12 defeciency after having a blood test which confirmed i have pernisious anemia? previous to this blood test i had a scan of my belly because of gastro problems which i was told i had an enlarged live which has a cyst on it after having a second blood test my levels were the same which all my doctor did was write me a perscription for some folic acid told me a list of food to eat and told me to come back in 3 months time to have my blood done again but im worried as my symptoms are more noticeable to me im so tired all the time and iv got tingling in my hands and feet ackey bones dizzyness etc im even more worried now also reading a post on your page concerning autism as i have a 15 year old son who has traces of aspergus and adhd do you think there is a connection from me having b12 this is all so new to me i dont know what to think or do and feel as if i have been left in limbo…..
michael goroncy says
Hey Chris
Are you confusing nitric oxide with nitrous oxide?
Chris Kresser says
Good catch, Michael. Not confusing them, just mis-typed it.
Sue says
my trouble all started after i had alot of dental work done i really think it was the gas
Jennifer says
Nitrous oxide depletes your body of B12. confirmed. So, yes, especially if you were already borderline, the use of nitrous could have pushed you off the edge.
Monte Diaz says
What is a good dosage range for maintenence Chris, assuming a person doesn’t have absorption issues. Do you think sublingual or liquid forms are any better than pill form? Thank You.
Chris Kresser says
I don’t see a need for ongoing supplementation for those without deficiency or absorption problems, assuming adequate dietary intake.
Elisabeth says
Oh, yes…those who had som kind of a stroke, had any kind of brainsurgery etc they will always benefit from 1-5 mg a day of B12…as protection. I have known this for a long time (years), but never saw the real proof in knewer studies, just can´t remember where I read that, yesterday…
Sandra Brigham says
The sticky thing is, as my doctor explained it to me, we don’t know whether there is an absorption problem (barring IF issue) or not. And, according to her, there is no way to tell if it is a storage and/or retrieval problem (liver). My extensive review of the literature, lay person here, revealed nothing she missed.
But if one goes Paleo and stops supplementing then takes a serum test, wouldn’t that tell if Paleo made the difference if levels are good. Of course, then begs the questions: how long would you have to be on Peleo for serum to change, how long do you have to be off supplements before taking the test becomes the question and are serum tests valid, *enough*?
So my MD recommends B12 supplementation for life. Easy enough I guess, but since liver and pancreatic cancer runs heavily in my paternal family’s history, I’d like to know WHY I was/am deficient in B12. It may be epigenetics, MD postulates, as I come from the most northern tip in Maine where potato agriculure has been our (Canadian/Maliseet Indian) way of life since colonization, and thus there is nothing to find on exam…
So now, I worry about my liver all the time.
Sandra Brigham says
At the young age of 43 (3 yrs ago), I was diagnosed as B12 deficient (120). I was lethargic, having extreme memory problems, falling asleep at my desk at the firm, painful thighs, numbness and tingling in extremities and the scariest of all – spatial disorientation (tunnel vision – needed to hold the railing in stairs ’cause if I looked up to see where I was going my feet tripped but if I watched my feet I didn’t know where I was going; I also had to let my hand drag along walls as I walked down a hall to guide me since I had to watch my feet, like to make sure I picked them up), tingling scalp (couldn’t tie my hair up w/scrungies ’cause I’d get migraines if I did); driving on the wrong side of the road cursing the oncoming drivers for driving the wrong way!, standing at the ATM while it’s beeping at me not knowing what I’m supposed to do, trying to consistently open the front door with my remote car control, forgetting my age, word recall difficulties (I’d say “window in the ceiling” for skylight) and knew it was happening, after it was called to my attention, but was ok w/it since I was still communicating but I’d get weird looks!!, doom and gloom and the list goes on. Initially they referred me to Psyche but I refused and demanded blood testing for B12 and IF.
We ruled out not having IF & anemia and parasitic infections, not a vegan, never had abd surgery or used PPI. All I had was a family history of colitis (mother) and Crohn’s (son). So we never determined the cause of my deficiency but a couple of shots and then sublinguals abated the neuro stuff and most of the fatigue (not falling asleep every few hours). I continued to complain of extreme fatigue and unrefreshing sleep so Infectious Disease did a PE, negative, and referred me to Psyche. Dr. Deans must make a killing off these types of referrals!
It wasn’t until I went Paleo/Archevore Jan 2011 that every last bit of fatigue just went away (after the carb-flu). I’ve regained, by my home-spun estimates, 6+ lbs of muscle and taken inches off all body parts, slow but steady. The only issues that remain are some word recall problems and left foot tingling. Would B12 affect cortisol or adrenals? I may have some of that going on too.
But it was SAD and chronic cardio (42+miles on trails/wk for 8 yrs) that were killing me!
This post was timely as I had stopped taking my B12 sublingual and was going to have MD test levels in the Fall to see if my dramatic protein increase (from 2-4 oz/day to 12+ oz/day) made a difference. But if a lot of your patients that are Paleo are deficinet, maybe I should resume my sublingual (1000mg).
Great post Dr. Kresser.
Peggy The Primal Parent says
Thanks for leaving your experience, Sandra. I was never diagnosed with b12 deficiency before I started the paleo diet because I never had a doctor that had a clue but I had many of the symptoms you described which is what prompted me to start the paleo diet to begin with. The symptoms cleared up quite quickly when I changed my eating habits but I have always noticed that they return to some degree when my digestion is impaired (when I deviate from the diet).
Thanks Dr. Kresser for the thorough and informative post! I think this information will help many people who are suffering from undiagnosed conditions.
Sandra Brigham says
Fixing mine too! …1000mcg….not 1000mg!
Sue says
I had all these symptoms still have the effects take a shot a week Doctor said I had nerve damage from it daughter has hypo thyroid she wanted mine checked thought it could be that also havent heard from all the blood work yet but the endo doctor has already called in 50,000 units of vitamin D once a week im also vitamin d depleted these make me have much more energy but still have the sensations really dont think they will ever go away
Irene Gutteridge says
Hi Chris,
I am curious, I have a supplement called Florivit (canadian based company called Salus), and it says it has B12 in it. Do you have any experience with the effectiveness of this vitamin supplement. It is commonly prescribed for Vegans/Vegetarians…..Arnie Lade in Victoria originally suggested I use it from time to time.
Irene.
Chris Kresser says
Irene, I don’t have any experience with it. But I recommend methylcobalamin in general.
Rose says
I am 30 and am very depressed always freezing hands feet nxiety I order and 2 years ago very horrible panic attacks I can’t live my life or have any motivation too I m nderweight and 30 please guide me I don’t feel well always home don’t get my period ever only 4 times in m life n take levoxyl for hypothyroid yesterday I fleet so irritable like i was craling out of my skin and going crazy 🙁 I took under the tongue b12 and felt so much better now I am confused. Esp about peopl getting sick off the shots nd numb ness altho my hbds nd feet are numb already Please advise
Bless u,
Rose
Kim says
I recently read a story from the CDC that a young vegan man was treated for a psychotic episode involving schizophrenia. It was discovered that he was severely b-12 deficient. After being treated with b-12 and a short-term course of anti-psychotics, he recovererd. Makes me wonder 2 things: did he finally get the message that a vegan diet was not nutritionally sound? And secondly, how many mentally ill people such as schizophrenics and other’s being treated with powerful and dangerous drugs are really just nutritionally deficient or celiac?
Kim C. says
A bit off topic, but I was wondering if you knew, Chris, how freezing liver might affect the vitamin content. I eat raw liver regularly (1/4 lb per week), but I can only access frozen, grass-fed beef liver from my local farmer. Thanks, Chris. I love your blog and podcast, by the way … very insightful.
Chris Kresser says
Kim,
According to Nutrition Data (http://nutritiondata.self.com/topics/processing#cooking), there is a 0% loss of B12 from freezing. That’s why I often recommend cutting up liver into tiny chunks, freezing it for two weeks, and taking the “liver capsules” that way.
Sandra Brigham says
I do this for the dog and is good for up to one year; at 114 lbs, he gets 2 oz every other day (chicken or beef). I still give him his B Complex Vit though since he can’t tell me how he feels.
I make liver pate for myself and freeze them in 2 oz servings.
Greg says
Kim / Chris,
Eating liver raw the only way or can it be cooked to get the b12?
Bridgett says
Thanks for getting this information out, Chris. Not only am I a vegetarian, but I am also genetically “challenged” at assimilating B-vitamins (I took a genetic test. That’s how I found out). Lovely, huh? So I am acutely aware of this issue, and I attempt to “spread the word” as best I can. I will be pointing people to your post as a way of doing just that.
Evan says
Great article. For those with intestinal disease/absorption problems, do you think daily doses of fermented cod liver oil ala Weston Price would be sufficient?
Chris Kresser says
FCLO does not contain significant amounts of B12. I recommend approximately 1 mg/d of sublingual methylcobalamin for those with intestinal absorption issues.
Isaac Rivera says
The highest sublingual tablet I can find has 3000 micrograms, I would need 333 tabs to arrive at the 1 gram daily dose!
Chris Kresser says
Ack! Serious mistake on my part. The dose is 1 mg, NOT 1 g. I’ll fix immediately.
Phyllis says
Unfortunately, it won’t work for people who can’t absorbed it through the digestive track.
Isaac Rivera says
“Sublingual” doses are primarily absorbed through the mucous membranes in your mouth.
Sandra Brigham says
Yes, that’s why if the cause of deficiency can’t be found, a sublingual is recommended because it doesn’t go through the digestive tract, it goes directly into the blood stream, as I understand it. So lack of absorption or storage and/or release don’t come into play.
Thanks for the book recommendation Dr. Kresser. I just requested it from inter-library loan. Maybe it’ll answer some questions for me.
Elisabeth says
As I see it, the greatest problem with B12-deficiency is the fact that the condition so easyly gets irreversible. If it isn´t discovered in time, there will be a lifelong problem. It´s horrible to see a confused person, full of diffuce anxiety, wandering about in it´s depressed condition…and nothing helps when it reaches this stage
Chris Kresser says
I agree, Elisabeth. This is particularly tragic in light of the fact that B12 deficiency can be so easily and cheaply diagnosed.
sandi says
so, is this and your comment saying, that if we find we have a deficiency, it is impossible to rectify by taking Vit B12 supplements? this is irreversible?
Chris Kresser says
Low B12 levels are correctable through supplementation – either sublingual or via injection. The damage caused by B12 may or may not be reversible, depending on where that damage has occurred.
joanna says
HI Chris.
I was going to my Dr, for years,with pains achs and pure tiredness,falling asleep all the time!i lost my baby boy over B12 deficiency ,so for me and mine,it doesnt really matter if its reversible,my son would of been 12 in april.. no one ever thought about looking for it untill it was way to late,Doctors should test for it!if only i were given the test before it was to late!and a painless injection,Seth would be here with mme now
joanna says
V-12 Def …. is a life changing problem as i said i lost my baby but also i lost my family,the loss tore my family apart,my husband couldnt take the stress,so he left and we lost everything,including our home!..ppl plz push ur doc on testing!
Jane says
Chris,
If they catch the B12 deficiency in time symptoms can get better. In my case, drs. didn’t and I have permanent nerve damage. Apparently, my body cannot absorb Vitamin B12 orally’ so that’s why I started shots and now I’m on Nascobal a B12 nasal instead of the shots and it has worked as well as the shots for me. When your body can’t absorb B12 orally it’s called the intrinsic factor, which is what I have.
Judy says
Hi Jane,
I have the same problem you had. They didn’t catch my B12 level in time cuz they took a lot of tests, foe other things, MRI’s, Bloodwork and a spinaltap. And found nothing causing all my symptoms. Two years later a dr. did some tests and found my B12 level was 41. By that time the nerve damage was permanent.I took B12 injections and now take Nascobal.
My levels are always up but no change with my symptoms. So I’m looking into MeCbl/AdoCbl
to help the central nervous systems.Possibly TransderOil which I read about on this site.
But my body too can’t absorb B12 orally which before 8 yrs. ago I took supplements and then that’s when all this started.
sharon says
thats exactly me, i get my jabs every 10 weeks and they last for 6. then i decline i dont recognise myself, i cant cope with people, i have to take a step back and watch my every move i cry everyday .
Jesse says
You may be right, but assuming I don’t want to just take your word for it, where can I find evidence that anyone besides vegans and old people have to be concerned about adequate B12 intake?
Ann says
I’m your evidence. I eat meat everyday, have done since I was a kid, and at age 29 was diagnosed with extreme B-12 deficiency/pernicious anemia. This after going to a neurologist because they thought I had MS. I have permanent nerve damage as a result of not being diagnosed earlier, a simple test would have prevented this when I first complained to a doc at age 23. If you have any symptoms of deficiency take a test, it’s cheap and simple, as is correcting the issue.
Jesse says
Fair enough, Ann and Phyllis. It makes sense that there are people who are genetically inclined to have trouble absorbing B12 (and, if I recall correctly from my parasitology class, Scandinavian women who are infected with a certain Diphyllobothrium tapeworm should be concerned too). I may have misread the article, interpreting it as suggesting that B12 deficiency is a widespread problem that could strike anyone any time.
Angela says
I am only 23 and suffer from severe b12 deficiency.
Tori says
Now I don’t feel so bad. I read that it usually happens in people over 60. I was just diagnosed and I’m 17
Chuck says
My daughter who just turned 20 was just diagnosed today. It would not have been something she would have been tested for but she was having neuropathy type symptoms in her feet.
Cathy says
I went to the doctors because I’m having trouble walking there calling it a sensory perception problem. They have discovered my B12 is at 380. I am taking 1,000 B12
pill every day for 4 weeks now no difference. Is there anything that can be done to help me. I’m having so much trouble walking?
Chris Kresser says
Sounds like you aren’t absorbing oral B12. You may want to switch to a sublingual form of methylcobalamin at a higher dose.
Freddd says
Trouble walking is serious. Is it balance or lack of awareness of where your foot/leg happens to be or it’s position or inability to feel the leg or foot?
I got to the point of falling because I couldn’t feel where my leg and foot were or their position. Effective aggressive treatment was required to keep me from ending up in diapers and a wheelchair. It is urgent to do it correctly ASAP as each day increases the amount of potentially permanent damage.
Beth says
PS: what the doctors are not telling you. Some people cannot process or absorb manmade supplements and synthetics and/or shots. The body recognizes B12 from natural sources. I started eating beef liver every day. It changed my life…healed my anemia and auto immune disease. No more pills…no more steroids. Email me if you have questions. [email protected]
Helen says
Yes! Get B12 shots. It makes a world of difference!
I have neuropathy too and taking the B12 sublingually didn’t help at all – except my blood tests. As soon as I started taking the shots my nerves started to heal.
You can get the syringes and B12 online if your doctor is uncooperative.
Adele says
My son (16 yrs. old) had a migraine at school. He had never had one before this. (It was complete with fuzzys from the corners of his eyes which vanished when he tried to look at them and a lot of other bizarre eye stuff) I took him to a neurologist, who ordered all of the usual blood work. His B12 was at 284, we were told that this was causing the constant headache. After 2 months of every other day shots, the level was finally brought up to a whopping 450 (the Dr. really wanted it to be at least 500) My son will need to take B12 supplements for the rest of his life. For all of the things in life that can be wrong, this is an easy and inexpensive fix and the consequences of ignoring it are horrible. Just one pill a day is not that hard to swallow.
Rajeev says
Hi Cathy,
I am also suffering from the same problem and it is so difficult to walk even for shorter distances. My feet have become thinner and there seems to be loss of fat pads from down below. I am also suffering from diabetes which has definitely potentiated the symptom in my case. Please get yourself checked for diabetes mellitus too, as poor glycemic index too can cause peripheral neuropathy.
Rajeev.
New Delhi
India
Eil says
I have Pernicious anemia, I get an injection every 3 months because my body cant absorb B12. Might be that your body is the same.
patricia says
i too have the same issue. i have been doing my own injections of B12..you may find better results with B12 injections.talk to your Doctor..hope this helps.
San says
I was recently diagnosed. Have had one injection and take 5,000 units sublingually a day. I will have two more monthly injections, then retesting. I feel MUCH better…the shot gave me a real boost after a week.
Ana says
It takes time. I had severe B-12 deficiency during my pregnancies and walking was so painful (like walking on knives). It took almost six months of daily shots of B-12 before I saw true results. I would suggest switching to injections. I believe your body might absorb it better if it’s injected directly into your muscles. Good luck.
Joni says
You always need to take folic acid as well when taking vit B12. Deficiency in one vitamin can mask dificiency in the other. 400-800 mcg per day. You might try higher doses of B12 – I’ve read it’s extremely safe even in high doses. You could try up to 5000 mcg per day.
Of course your B12 is not terribly low. Your sensory perception problem might have another cause – go back to the neurologist for further tests.
Jay says
Wow!! That’s crazy. My b12 level is at 120 and I kept wondering why toes and fingers kept going numb all the time. It’s crazy cause all the doctors refuse to give me b12 injections and insist I take half the dose of what you are taking in pills!!!
Gennie says
I am now learning how to walk again . I was in the hospital for 5 days because I woke up one morning couldnt see well and couldnt hardly walk. my son took me to the hospital where they said my medication stored in my body hen released all at one time causing toxicity. It caused damage to my brain (equilibrium.) which now Means have to start over. I couldnt even feed myself, walk, stand. but I know can do it. Its about training my brain. I have come along ways in 3 months I can almost walk by myself, I can do everything els just balance and mentally I have trust issues but m so much better.. They just tested me thinking was low on vitamin and yes B12 was way low.. I now take injections but no one will say that is why all this happened.I hope is not to bad. Anyone know how long this will go on for?
yvonne says
I am not a doctor or anything like that, but I have been through this and almost died. I had to figure out what was wrong for myself and tell the doctors even though they knew I had been a strict lacto ovo vegetarian for 15 years. They were convinced I had MS but were puzzled not to find it in the MRI’s. I couldn’t walk straigt. My urinary system was not working right. I was losing vocabulary and logical thinking. I was losing my short and long term memory. I was having visual halucinations. I was having vibrating sensations where I was convinced My phone was vibrating or the furniture was vibration or something was moving inside of me. Needless to say it was very scary. It has been a while so I can’t remember how low my numbers were when they tested but the Doc said I should have been in a Coma. B-12 pills did not work at all, sublingual did not work and gave me blisters in my mouth but the doc prescribed injections weekly for a while and then monthly and it worked wonderfully and even helped with all the bruises and soreness I was having that they thought was the beginning of Fybromialgia. Insist the doctors do their jobs and do your own research and they can not ignore you. If they do find another doctor. Go to a neurologist if you have to. Have them check your Iron levels and vitamin D and magnesium levels too because these things travel in groups sometimes and reak havvock! Good luck and just know you are not alone.
Arthur says
I’ve been told by a neurologist that taking pills for b-12 do not work as well as the injections.
Nils says
Have you talked to your doctor about B12 injections (if he or she is convinced that low B12 is the cause of your walking problems)? Injections can very quickly raise your levels. And some people with B12 deficiencies have written that eating organ meats like beef liver, in large quantities, or taking the methyl form of B12 (methylcobalamin) sublingually, helped raise their B12 levels. Jarrow makes a 5000 mcg sublingual methylcobalamin supplement.
Diana says
I’ve been taking B12 injections for years now and they help tremendously. Problem is…..they are slowing down and will eventually stop the production of it.
JERRY BOUCHER says
What’s happening is that your myelin sheath on your nerves has been compromised and the only way to fix this is by taking massive doses of methyl B12 until the problem is fixed and if you don’t have good blood sugar control the B12 will not work. It could take as long as 3 years to rebuild the myelin sheath
Cinnamon says
After years of numbness and no feeling in my feet a lower legs, 3 shots of cyanocobalamin I’m starting to get the feeling back! Perhaps the form you are taking is not one you can absorb. Talk to your doctor again, you really may be on the right track.
ApotheCarey says
Just wondering, are you taking statin drugs? Those can also cause symptoms like that.. neuropathy, not always feeling your feet, etc.
AnnF says
Hi Cathy,
I know it’s been awhile, but I originally started taking 20,000 mcg a day, and now have to still take 10,000, otherwise, pain and lack of balance returns.
I have to tell you, though, after taking my B12, I stopped walking into walls, but recently started taking Milk of Magnesia tablets as a Magnesium supplement, and after about a month, I could stand on my toes, stand on one foot, and my lightheadedness is all but gone. So you may also need more than B12.
Miriam says
I had the same symptoms which is what tipped the doctor off to have me tested. I had fallen a couple of times and was having issues with my memory. When the test results came back my levels were below the lowest level. I’ve been taking shots once a month for three months and I’m currently waiting for the results of my last blood test to see what improvement there is. Next month I’m to be tested for pernicious anaemia.
Lily says
April 2013 – note to readers of this thread:
CHRIS KRESSER HAS WRITTEN A FOLLOW-UP ARTICLE ABOUT B12 DEFICIENCY – He posted it on JANUARY 18, 2013. Unfortunately the site has not linked these two articles together, and the second article doesn’t have any tags on it, so it can’t be found by searching for “B12” on his site.
CHRIS ALSO PROVIDED AT THE END OF THAT FOLLOW-UP ARTICLE HIS SUGGESTED LIST OF THE *FOUR* SUPPLEMENTS (BRANDS, TYPES, AND DOSAGES) TO TAKE IF YOU WISH TO REPLENISH YOUR B12.
PLEASE CHECK OUT HIS “NEW” POST ON B12 TO GET HIS LATEST THOUGHTS ON B12 DEFICIENCY AND SUPPLEMENTATION.
THE DIRECT LINK TO IT IS: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency
Chris Kresser says
If you search for B12 using the search box in the footer of the site, the article you mention is the second one listed. But thank you for providing the link to others.
colleen says
Hi Mike,thanks so much for the information, it makes alot of sense to me now.i was having banans when i first started injections as i heard potassium can drop but didnt continue.wouldnt benefit like supplementing it would anyway.As for the magnesium i did have it on my lists to be tested along with vitamin D. I wasnt aware my vitamin D was tested recently & was good levels being 90.i didnt feel comfortable asking for more blood tests as i feel my Dr thinks its all unnecessary & over testing.will definately get vitamins for both ASAP & test for potassium & magnesium in my next lot of tests.i do experience bit of twitching & cramping so im all for trying to see what helps .
thanks again
Colleen says
Just got on line to order some more B12 oil but the site is no longer operating due to issues with supply and payment.ive nearly run out as my daughter is also using it now.does anyone know if the sites closed permanently or if i can get it from another supplier.In Australia nobody has heard of it in the city i live in.
Greg says
Hi Arthur,
Your neurologist is absolutely correct.
Another surprising bit of information is that even for high dose oral tablets, particularly of MeCbl, apparently the environment in the stomach and the small intestine is sufficiently harsh to remove the methyl group off most of the dose. This doesn’t happen with injections or with the new topical formulations
Madge says
Hi Arthur,
Your neurologist is absolutely right. Of the doctors that do know about nerves and VB12, I would say that the neurologists have the best idea. So yes you will need high dose VB12 to recover. I wouldn’t waste your money on the sub-liguals. Apart from potentially rotting your teeth, there is no way that they can deliver enough VB12 to overcome your deficiency. As you can see from Annie’s comment, she needed injections for months. There was a high dose topical product available from Transdermoil.com, but they have temporarily withdrawn it due to some issues with other competitive web-sites trying to copy their product. I have been told that another site will open soon.
In the meantime, if you are going to have injections, avoid the cyanocobalamin injections. It has been shown that up to 50% of people don’t respond to them at all!!
You could try the hydroxycobalamin, or wait for the mixed Ado/MeCbl to come back on sale
Madge says
Hi Cinnamon, retry the site, looks like the tornadoes have affected the web, somehow. The b12oils.com site appears to be working now.
Mitch says
Hi Chuck,
I have been diagnosed with the same peripheral neuropathy. The neurologist could not identify the cause however.
You should demand a blood AND Urine mercury test
I learned that this is the number 1 symptom of mercury poisoning.
The Dr initially refused to allow me to test, BUT at my insistence and informing him of the countries that had banned Amalgam she relented.
My blood test came bacl normal, BUT my urine test was OFF the charts !!!!
Simply stated the medical training here in NZ does not cover Mercury/toxicity in any shape or form, hence they are as ignorant as Joe public about its ramifications.
Quite unbelievably the neurologist did not consider (or if he did, he did not convey to me, which is bloody suprising as it effects the nervous system> testing me for mercury.
Subsequent to my discovery, he has refused to comment on my emails that I have sent to him.. I will persue this don’t you worry.
Good luck
Jessica says
Chuck,
I’m 19 and I’ve just been diagnosed today. Like your daughter I was having the same neuropathy symptoms!
How is she being treated?
Gina says
Hi what kind of feelings in her feet
catherine says
my nan and her sister both had pernicious anemia never took much notice as they have passed away. in the last 2 weeks my sister 47 my daughter 36 my niece 16 have all been diagnosed with B12 deficiency they will have needles for the rest of their life.many family members are now being tested
colleen says
after myself ,my 16 year old daughter & other family members being diagnosed B12.ive had my 6 & 8 year old tested .my 6 year olds reading is 372 , my 8 year old is 293 and according to our DR they are good levels.they are still rather low i think and wondering if i should give them vitamin B12 tablets to boost their levels.my 3 children have ADHD ,the 6 year old aspergers syndrome.many of the symptoms which occur in B12 deficiency. their condition may improve some if their B12 levels were higher.id also be interested in testing them again in 6 / 12 months to see if their body absorbs it as we have injections due to the body not absorbing B12.
Judy says
Hi Colleen,
Eight years ago, I started having numbness and tingling in my toes and went to see a nuerologist. He took a MRI and bloodtests thinking I had MS. But tests showed I didn’t. within those next two years I went to other nuerologists, even having more MRIs, bloodwork even a spinal tap, still nothing. My condition was getting worse, fatigue,peripherual neuropathy and numbess and tingling in my legs and my balance was bad. I went a internal medicine dr. and he tests and found out my B12 level was 41.He started me on a regime of B12 injections for years. My level went up but my symptoms didn’t get better, there was permanent damage cuz they didn’t find it soon enough. I’ve been evaluated and I’m unable to work. But now instead of injections, I take a nasal spray called Nascobal and my level has been in the 700’s.Just keep getting the levels checked and hope they don’t get too low.
colleen says
Hi Judy,im hoping to keep my levels around 700 as the last testes they were 1476pmol/L..meant to have more injections end of november but i wont be waiting til than.i get tests results for MTHFR next week ,will have my bloods done than im going to start using the red B12 oil .i feel my levels are low again already as i lost my car today in the shopping centre under ground car park.was pushing a trolley full of groceries around and accidently come across it thank goodness as i was going to be late for school pick up.now i understand more why this happens and dont feel im going totally nuts.im hoping the oil will have good results like ive heard,will take some weeks i guess but hope i get energy and less fatigued.will keep you updated about the oil .Hope you keep improving and levels stay up for you 🙂
Judy says
Hi Colleen
Thanks for answering me back. I received an email about RedB12 oil and I’m sending a copy to my doctor to see what he has to say about it. If it’ something that can somewhat help the the numbness and tingling in my legs and feet–I am willing to try it. Please let me know how it works for you. Is this something you order online or is it a prescription?
Finndian says
Judy, have you tried potassium? Tingling and numbness of extremities is also a sign of potassium deficiency.
colleen says
Hi Judy, not sure why theres no reply link near our comment so ive used the one above.i went on line and purchased the B12 oil.i used the link from this site .received the package in less than a week.
Sue Turnbull says
All my kids had the symptoms of ADHD, doctor wanted to completely medicate them.
However my husband had severe asthma, and thought it could be diet related. We went through lots of elimination diets with no help from medical professionals (this was 1978) He was allergic to wheat (not gluten) dairy products and colourings flavourings and MSG.
He now runs marathons and the kids have had no treatment for ADHD. It was expensive, my food bills were double, and a lot of tears from the kids not being able to eat same food as their friends. It may help you to try I hope it does, I can always send you some weird recipes …Good Luck
Judy says
Hi Colleen
I was just wondering if you’ve tried the redB12 oil yet and if you’ve noticed any change.
Greg says
Hi Catherine, and Colleen,
You show a very interesting genetic linkage with the pernicious anemia.
There also appears to be a linkage to red/blonde hair and blue eyes.
Don’t know if anyone else has seen this.
You no longer need to take the needles. There is vitamin B12 lotion that you can rub on and get better results.
Check out http://transdermoil.com . The product is Red B12, it has both natural forms of vitamin B12, adenosyl and methylcobalamin.
You can find out much more about VB12 deficiency at http://www.vitaminb12deficiency.net.au
There you will see many of the other potential problems that you can have with sub-clinical deficiency.
You might actually think that by treating with VB12 you more frequently you can avoid many other problems.
colleen says
i have read there seems to be a linkage blue eyes and blood group A.we are blood group A ,i have green eyes and everyone else has very blue eyes.
colleen says
Hi Greg, thanks for replying.Catherine and I are sisters.
after her daughter was diagnosed b12 deficient Cath strongly encouraged me
to get tested.i went to my Doctor to get test results for my daughter and I & to requests
b12 tests.thankfully she had written b12 to be tested.i was surprised when she said my 16 year
old was more deficient than me.she eats meat each week and i have been a vegetarian for 12 years .must be an
absorption problem .i also have an hypoactive thyroid ,have been on thyroxine for 16 years.i hope this doesnt stop my b12
from working as good as it should.im very interested in the lotion .i have lots to learn & this great site is helping wonderfully.
thanks.
Greg says
Hi Colleen,
Interesting familial linkage that you have, although often it can be due to the same diet leading to the same problems. Being a vegetarian, depending upon you diet it can take years to be overtly VB12 deficient, although you may be sub-clincally (<400 ng/L, pg/ml) deficient way before you feel any signs. As for the meat consumption, this is very dependent upon type of meat. You would need to eat 4 lb (2 kg) of chicken each day to get your daily allowance, for instance. I have a table of values on my b12 deficiency site. You will be surprised how little VB12 there is in most things we eat.
See http://www.vitaminb12deficiency.net.au
Hypoactive thyroid can make you feel like you don't have much energy as well, which compounds and disguises the problem. It is also involved in the folate cycle, so a double whammy.
The oil is available from http://trandermoil.com
Yes I agree, many things are discussed on this site that are not generally known, particularly to physicians.
Judy says
Greg,
How did you find out about this Transderm oil (Red oil). I went on the website and it sounds interesting. Has it been approved by the FDA. I’m going to mention it to my doctor next visit and see what he says about it.
Colleenhickmott says
Hi Judy,I have been using the oil for about 6 weeks now.have been very tired but get bouts of energy some days that I hadn’t had for years.its a slow process and I even had an hydroxocobalabin injection 2 weeks ago to keep me going til the oil really gets working.I guess it could be months before I feel true results.I have also discovered I have MTHFR C667T gene .may take longer for me to sort levels out ,still have lots to learn it just keeps getting more complicated.good luck Judy I think the oil is good.
AnnF says
If you are white with Northern European ancestry (North of Southern Spain from what I can tell), or even are dark, but have some Northern European ancestry, you are at a greater risk for having low B12.
Cinnamon says
I tried your link and got crazy domain, buy your domain name now. Is there another way to find this oil?
Judy says
Catherine
eight years ago I was diagnosed with a B12 level of 41. Dr.’s didn’t catch it in time and I now have nerve damage in my legs, feet and hands. Balance is also bad. But I gave myself injections for years until I discovered a B12 nasal spray you use once a week and my level has been in the 700’s. Hasn’t improved my nerve damage cuz it’s permanent, but it’s better than needles for the rest of your life. If you have any question for me about this my email is [email protected]
Greg says
Hi Judy,
what form of VB12 were you taking. My reading on this is that in order to get your neurones better you will need both methyl and adenosylCbl. The methyl is required for formation of proper myelin basic protein, which coats the neurones, and which is slowly replaced over time. The Adenosyl is required to “fix” the mitochondria which seem to become shrunken and mishappen in the absence of VB12. So this takes some time. Nextly (not sure if it is a work, but we’ll go with it), in cases of adenosyl cobalamin lack there faulty lipids incorporated into the myelein sheath. Now these lipids have a very slow turn over rate, and take years to replace. So in order to fix all this damage you need both methyl and adenosyl cobalamin in high doses (higher than the spray can deliver) and it needs to go into the CNS. (Measuring serum levels is not a true indication of what is in the CNS, furthermore it doesn’t tell you if you have active or inactive forms of VB12, nor if the VB12 is bound to TCII, which it has to be to be effective.) On top of this you have to “cure” the cause of the deficiency in the first place. If you don’t do all of this together, you will only get relief rather than cure.
colleen says
my daughter was diagnosed b12 deficiency the week she turned 16..as her cousin was diagnosed the week before her we went to the doctors to get results of previous routine blood tests and requests her b12 levels be checked.luckily her doctor had checked them without us even asking her to.she has been on b12 shots and is a diffrent girl .happy ,fun ,enthusiasm etc is all starting to come back.
.
drgoody says
I was 16 – walked out the front door to go to school and had to sit down on the steps. I just ran out of “go.” Pernicious anemia. Mother was humiliated but I had been eating a healthy diet. B-12 shot and I felt like I could climb a mountain within 30 minutes. Had to eat liver for breakfast and drink brewers yeast and I forgot what else. That was in 1962 or 63.
Brandt says
That’s really not good. I’m only 13 and I have a vitamin b12 deficiency!
colleen says
Good that youve found out now Brandt & not years later.i believe i had symptoms at your age ,im now 47 & just been diagnosed.
Kathy Stocker says
My Doctor just did a DNA swab test and now a blood test called MTHFR. My body is unable to metabolize any folic acid whatsoever. No matter how much supplements I take or green leafy vegetables I eat my body is unable to absorb it. Now at the age of 50 I have a tremendous amount of health problems including colon resection, anemic, nerve damage, two knee replacements, stenosis in neck and on and on. Found out that my daughter at age 11 lumbar had a crack in it and had to get spinal fusion and troubles ever since. Son learning disabilities and both children with chronic migraines all because my body was unable to metabolize folic acid. Im not sure if that’s the reason for all their problems but, we all are getting the blood work done called MTHFR. I am currently on Deplin which is a medical food that my doctor ordered for me in order for my body to metabolize the folic acid and now at the age of 51 I’m finally waking up and have ambition to get things done. I had to be on ADD meds all these years thinking that was my problem when all along it was because I could not metabolize the folic acid. No B 12 shots B 6 shots ever helped because my Doctor explained to me about how the molecule in my body would reject it. Now I wonder if this is why my children have had their problems. So, my advice to everyone is ask their Doctors about DNA swab tests and the MTHFR blood work to be done. Not being able to absorb folic acid(folate) all B’s believe me can cause so many problems and I am an example of it. To bad we didn’t know about this 24 years ago. Good Luck to all and if I can get at least one person to get this test done and have them have a better life then I’m a happy girl. Doc also said that this is the leading cause of women having miscarriages and unable to conceive and also one main reason for alztimiezers. I apologize for the spelling errors. One symptom of B deficiency! One more thing to remember no matter how many shots, supplements or green leafy vegetables you consume, it won’t help! Need Deplin, medical food. These test will tell you what your lacking and what meds you need and what meds don’t work for your body. I also found out that no pain meds work for me, so why bother taking them, they go straight to my liver with no relief. Also found out that I get zero seratonion and neonephrine(sorry no spell check) to my brain and need Luvox Cr. Only med that will work for me personally regarding DNA test. Pretty amazing information.
Freddd says
Kathy, You have the same paradoxical folate deficiency as I do. I found that if I take 4mg (half a 7.5mg Deplin-Metafolin) with each meal and another quarter a tablet a couple of times a day without food that I can eat a normal amount of veggies and have zero folate insufficiency symptoms. The sores at the corner of mouth are completely gone. IBS is completely gone. Peeling skin at the tips of my fingers and around my finger nails is gone. These three things start coming on in 2-3 days if I slip into folate deficiency and so I correct my diet or timing or whatever. I’m not perfect, I miss doses from time to time. I have noticable symptoms in 1-2 days and building to IBS at day 5. It reverses in a similar fashion. It took me about 6 months of changing trials to come upon how much and what timing was needed to overcome this result. You almost certainly would react with a large amount of healing with a 5 star brand of methylb12 taken properly and adb12. You woul dalso likely have a reaction of low potassium signalling the onset of healing. The two active b12s will also likely correct the neirotransmitter problem. For you, like me, green leafy veggies and many others are a problem. I take 15mg of Metafolin (Deplin) daily in a total of 5 doses (short serum halflife). When healing starts with a bang and you start having heart arrythmias and itching and muscle spasms in the middle of the night and other such things, potassium is needed, usually in daily quantities totalling 2000mg or more in several divided doses. Best of luck.
Paul says
Hmmm, you make B12 deficiency testing sound easy. I was having a host of nerve problems for years starting in my early 30’s. I suspected B12 although no doctors mentioned it despite me telling them I hadn’t eating red meat in 12 years at that point. I was taking cobalamin so of course the the serum testing you mention showed that not only was my B12 level adequate but the doctors said it was too high and advised me to stop.
Fast forward 5 years and my voice becomes hoarse for no reason and within 48 hours my voice is gone. I had developed a idiopathic paralyzed vocal cord… a nerve problem similar to Bell’s palsy. Looking for answers I had my DNA testing done and see the MTHFR and MTH issues mentioned here. I switched immediately to injectable methylcobalamin (against my doctors wishes) and metafolin. The doctor comments that my recovery is quickest he’s ever seen.
The ONLY test that showed or hinted at a profound B12 deficiency in me was an Amino Acid panel that indicated a long term B12/Folate and this DNA testing. The serum testing was useless and misleading especially if you are not absorbing all this B12 and folate that is circulating in your blood stream.
I am restored and the side benefit has been that my life long problem with canker sores has vanished and no amount of citrus can give me one. There is a Harvard study showing that B12 prevents cankers. So… I’ve been borderline a very, very long time and no serum test ever even came close to detecting it.
Freddd says
Hi Paul, With the right tools b12 deficiency detection is very easy. The international list of symptoms I developed used as a questionaire will detect most cases of all 4 kinds of b12 deficiency; adb12-CNS, adb12-body, methylb12-CNS and methylb12-body as well as methylfolate deficiency. Further simply taking one tablet of a 5 star methylb12; Jarrow 1mg, 5mg or Enzymatic Therapy 1mg. Taking one tablet of any of these three and holding it under the upper lip for 45-120+ minutes will absorb at 15-25% typically and produce a noticeable response in 5 to 120 minutes for 85% of the people with these symptoms. Adding a 3mg Country Life Dibencozide (with folic acid, beware) or Source Naturals 10mg Deibencozide (adenosylb12) also for 45-120+ minutes) will up that 85% to 90%. Adding Metafolin dose 30 minutes before the mb12/adb12 will up that to about 95% response. SOme people only have a hard to get to CNS/CSF cobalamin deficiency. Holding 10x5mg 90-180 minutes (more than 1 batch of tablets, overlapping) of Jarrow 5mg will detect 40% of the CNS B12 deficiencies. 51-60mg of either of the two adenosylb12 forms will produce about 40% response the next day after the mb12 50mg trial. Then the next day about 125mg of L-carnitine fumarate will detect the another 40% including many with no response to the prior adb12 trials. These 50-60mg doses are based on the Japanese neurological disease trials for which this was the neurological healing upregulating dose of mb12. One can have separate responses to each adb12 and mb12 spearately. The 50mg sublingual dose as proven itself equivalent to a 7.5-12.5mg SC injection of mb12 or adb12 by trial and by urine colorimetry. The beauty of these tests is that EVERYBODY who responds is deficient and will start healing with the correct program. There are no false positives. The one time trial may have HUGE results in which case a person needs to titrate carefully. B12 alone does not make a program. A low potassium state will almost always occur and can be dangerous. It starts typically on day 3 after methylatoin startup. Further the 50mg Jarrow sublingual plus 10mg of Enzymatic Therapy B12 Infusion dose is the gold standard of mb12 quality. Make sure your injected mb12 is just as effective against CNS symptoms like not being able to walk or feel your legs as the 60mg Jarrow/ET gold standard test. You will typically feel the difference in 4-6 hours or less if all the needed cofactors (basic, essential and critical vitamins, minerals and supplements) are in place.
In addition, about 15% of people who say “I have none of those symptoms” change their story after 2 hours of trial and say “Oh, I had forgotten about all those indefinite symptoms the doctor said I could forget about” as soon as those symptoms are affected. Nobody has a response who isn’t functionally deficient.
Detexting is easy and not terribly expensive. You just can’t rely on expensive lab tests becasue they were all standardized on a chronically deficient population and reflect “deficient” as “in range”.
Mark says
Thanks for the info Freddd – where can I find the symptom list you mention at the top of your post ?
Freddd says
Hi Mark
http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics post #24 is the symptoms list. I’ll be posting a new version in a week or so with more items added. It is an international list from countries using cyanocbl, hydroxycbl, methylb12 and avaialble in English. Further, often the same thing is there as symptoms and signs. Things like “neuropathies” have been expanded to many symptoms so progression and stages of problems are can be distinguished. Muscle pain has 10 or more entries distinguishing CNS and BODY. mb12, adb12 and Metafolin. Also included are symptoms that respond readily to the active b12s but not hydroxcbl and/or cyanocbl. This is the most complete list I know of. I had over 200 of them 9 years ago.
Mark says
Thanks Freddd – out of interest do you offer any kind of phone / skype consultation service ?
Mark
Freddd says
Mark, Many have asked that question. I’m going to get something set up. I was a consultant for 30 years before becoming to disabled to continue. Now that I am well, I am itching to get back at it.
Mark says
thanks Freddd – when do you think you’ll be ready to offer this service and where will be be announced – there are so many threads now it’s hard to figure out when to look and keep on top of….
Mark
Mark says
Hi Freed
I have a question…..I was tested in Feb and my serum level was at 156 and I had Neuro symptoms. i started taking the Jarrow 5000 and they mostly cleared up. Now (from two weeks ago) I’m adding 5000mcg of Ab12 twice a week and on the days I take that I’m getting pain in my thighs and pins and needles all over my body – it that a good sign inasmuch as I possibly had a CNS deficiency of both meth B12 and AB12 and the pins and needles are my body ‘waking up’ to the parts that only AB12 can reach, or is it a potentially bad sign ??
Thanks Mark
jodi says
Fred, Wow! That is a lot of info. Can you brake that down into layman’s terms please. I would love to be able to understand all that.
jodi says
Hello Paul, I have had some problems for awhile different one’s that seemed unrelated to each other. Then about 6 months ago I noticed my nails splitting then my lips chapping and final straw my hair is falling out. So I went thru a slew of process of ellimination ideas and finally came up with Iron deficiency or B12 and sure enough it is B12 my count is 209. Now it makes so much sense all of my other sysmtoms fit perfectly. My question to you or anyone else that might have an answer is this: I am giving myself cyanaocabalamin injections everyday for the last week and a half and now I am reading that cyanaocablamin also has absorbtion issues I should be injecting Methylcobalamin is this true? If so where can I order (Methylcobalamin) online to inject it myself? I have found only one site and it is really expensive at it seems they are a fairly new company. Please help.
Amber says
Hi Jodi,
Not sure if you found an answer to your question on methyl-B12 injections, but just wanted to say it’s available in sublingual form and that is what I’ve seen Chris, Freddd, and others recommend using. I myself am just starting on Enzymatic Therapy B12. Even though it says “chewable” it’s supposed to be held under the tongue or lip for 45 min or longer to be absorbed directly into the system (according to Freddd).
Veronica says
Fredd,
I have a few questions for you.
Because B-12 and folate seem to work together, would you recommend that everyone suffering from symptoms of a B-12 deficiency have their folate level checked? I do have may symptoms of a folate deficiency as well. If so, what kind of test do you think should be done for this–an mthfr test? (From my research, a lot of people, 1 in 3, cannot properly utilize folate, especially in its folic acid form).
If one is deficient or insufficient in both B-12 and folate, would you recommend that they both be administered via injection? I know many people who are deficient in B-12 have a B-12 malabsorption problem and I’m wondering if its possible to have a folate malabsorption problem as well, which would require folate being taking intramuscularly. Though I have never had my B-12 or folate levels checked, I suffer deficieny symptoms of both, and would like to have things things checked. I am gluten-sensitive, have Candida, reverse T3 dominance, adrenal fatigue syndrome, and clinical depression. Furthermore, I have reason to believe that I have no intrinsic factor as the likely result of hypochlorhydria/ achlorhydria seeing as after taking the betaine hcl test, I do not get the burning sensation in my stomach that is supposed to be felt. This being said, I’ve taken both sublingual methylcobalamin and methylfolate supplements, but feel these have been of no real avail to me even at high dosages.
If it turns out that I am deficient in both B-12 and folate, do you know of any doctors who would work with me to prescribe methylcobalamin injections (or methylfolate injections, if there is such a thing?) Or, can these injections be ordered anywhere without a prescription?
Julie Hill says
Veronica, did you ever find the answer to your question? I have the same issues as you and have been on early intro GAPS diet unable to progress for almost 9 months now. (My daughter who is two also hasn’t been able to progress.) We can’t tolerate many of the healing foods like eggs, sauerkraut, yogurt etc. We eat liver but it doesn’t seem to help us. Were you able to find a source of folic acid that helped you metabolize b vitamins?
Miriam Landau says
Kathy,
Go to: MTHFR.Net “Your Expert Resource on MTHFR Gene Mutation”
Dr Ben Lynch is a leading researcher and his site is one of the best resources about this genetically-based problem with folic acid metabolism. In addition, he has a store where he sells supplements SPECIFICALLY formulated for people with this genetic mutation! His prices are very fair and the product information is very detailed. I suggest you do this ASAP.
I’m a registered dietitian of over 30 years and a psychotherapist, and just heard him give a 1 hour webinar about THIS subject. He’s VERY knowledgeable, but, he is no longer accepting new clients. I suggest you go to his site and look around, but, mostly, be sure to look at the supplements for your disorder.
You can also refer your physician to his web site to help you figure out which one(s) might suit you best. I believe you can also inquire about what product would suit you, through the web site, but, Dr. Lynch won’t be the person to reply.
Hope this helps. Feel free to contact me through my website http://flamingbrainiac.com.
All the best.
Miriam Landau
Greg says
Thank you Miriam for your enthusiasm about the site. I have had a bit of a cruise around, and perhaps the best discussion that I have seen on MTHFR is actually at http://lifebalanceinfertilitycoach.wordpress.com/2008/10/07/the-mthfr-tutorial-genetic-mutation-and-cause-of-miscarriage/
I didn’t realize that the problem was so associated with failure to get pregnant, miscarriage etc with pregnancy.
After some encouragement from some of your readers I have put together a site with some of the chemistry and an explanation of it http://www.vitaminb12deficiency.net.au/VB12MTHFR.htm
You will see that as far as folate supplementation goes, it is dependent upon whether or not you have the MTHFR mutation (s).
colleen says
Hi Kathy ,im waiting on blood tests results for the MTHFR (677 and 1298) are the two they tests for.im not sure if it covers it all but thats all they do.Can you tell me if thats what your tests for MTHFR involved or is there more i should test for .i had my first b12 shots in june as my levels were 175 and last lot of tests were1476 pmol/L.im not picking up as much as i hoped .,very low on energy and fatigued .ive had a underactive thyroid for years and neck problems also. my three children all have learning difficulties and the youngest Aspergers Syndrome ,i do wonder if its because of my deficiency .i read up on stenosis in the neck,very imteresting i have all those symptoms and been attending chiropractic visits for years to have my neck cracked.although the last 2 visits they couldnt get my neck back in on the left side.it feels very uncomfortable and alot of pressure.they usually crack it both sides before i feel relief.with a combination of thyroid,B12 deficient and neck problems its complicated to work myself out.i was being tested for ADHD and Aspergers Syndrome as my concentration span was getting worse.realising what b12 deficiency does i believe that was the problem.dont think ill ever fully recover but improved signifantly.
Maija Haavisto says
Have you looked into Ehlers-Danlos syndrome? That could explain your neck problems and for some reason EDS and Asperger’s also have connection – women with EDS seem to get kids with AS more often even if they don’t have AS themselves. EDS is connected to malabsorption issues and some believe there’s also a link to MTHFR mutations.
whitney says
Glad to read that. I had a large tapeworm. (33 years old and have not been out of the country) Could have been from sushi?? And now b12 deficient. Even though my dr.’s say I’m just a little low on my levels, I’ve had major fatigue, neuropathy, anxiety etc. I’ve been getting a b12 shot and feeling better.
Alexander says
I’m also 23 and was just diagnosed with severe B12 deficiency. Funny thing is that my doctor didn’t think to check for it until my third blood test, where he could have checked for it the first time for the cost of practically nothing and saved me a year of my life in the grip of a deep depression. Have only been taking sublingual methylcobalamin for a week and feel like an entirely different human being already.
Judy says
Hi Alexander
After reading your story, I too, had a severe B12 deficiency level 41 and it took two years before a dr. tested me for B2. By then permanent damage was done especially to my legs and feet. My balance is very bad, severe stiffness, numbness and tingling in my legs. I have to use a cane or when I go out to places a walker.
I’ve been like this going on 9 yrs.
I was giving myself B12 injections then I started on a nasal spray which keep my levels up, but does nothing for my symptoms.
I’ve heard about methyl/adensol cobalamin and hydroxycobalamin, but my dr. doesn’t know a lot about these and won’t prescribe these. If you or anyone else know more about these I’d appreciate more info.
Madge says
Hi Judy,
It is not surprising that your doctor does not know about the normal vitamin B12 analogues in the body, which are adenosyl and methylcobalamin. I don’t know what they teach them in Med school, but it isn’t this. If you are only being given cyanocobalamin it is possible that you (and many others) cannot convert this to adenosyl and methyl in the body. There is a mixed adenosyl/methyl cobalamin oil available from http://b12oils.com/ I would try this. It has been fantastic for me.
Judy says
Hi Madge,
Thank you for the info. I’ve heard a lot about this and have been researching it. Of course I talked to my dr. about it and he didn’t know about it so he wouldn’t prescribe it.
What symptoms do you have. Mine are severe stiffness, spasms,
numbness, tingling, and very bad balance. I have to use a cane or walker to get around. I don’t want to get my hopes up, like about everything else with my b12, but if this would help, I would start to have my life back. Thanks!
Lynn_M says
Judy,
The B12oil available at b12oils.com does not require a prescription. You can order it yourself directly from the company.
If you want to have your life back, I suggest thinking outside the box of what your doctor will prescribe.
Judy says
Hi Madge,
I went on the website you gave me and entered my name, address, etc. and ordered the red B1 oil, but and submitted it and they never asked
me for payment method or anything. I haven’t her back from them since. It’s been two days and I’ve contacted them again and still no response. Is this a real website or a scam? Is this a real website to order the metynol/adenosyl oil?
Lynn_M says
Judy, if you’re talking about the http://b12oils.com website, it definitely is a real company selling a real adenosyl/methylB12 oil. They would have asked you for your shipping information, and then you should have been switched over to PayPal for invoicing. PayPal sends a confirmation email when payment has been made. Their Contact Us gives 2 ways to contact them. Have you tried both ways? their
Madge says
Hi Judy,
That sounds rather strange. I know that they are there did you try [email protected]? They should answer. I know that Greg from B12 oils normally monitors the traffic. If he is there maybe he can help.
Judy says
Hi Madge,
Just wanted to let you know, I did receive an answer from Greg about ordering the B12 oil and I received it already. I hope it helps even a little.
Madge says
Hey Judy, That is great. Just remember to rub it in well. It is very red. Let us know how you go.
AnnF says
You don’t even have to be predisposed genetically. Take too many aspirin, or take any of the new acid blockers, and you are most likely deficient.
B12 supplements are extremely safe, so why not take them?
Maureen says
So I have a deficieny in B-12 because everytime I go to the dr office, they don’t n e ny B-12. It appears to be back ordered n I haven’t hd it for at lest 3 months.
I hd gastric by ss nd once that is dont your body can’t bus orb the B-12 thru food, etc hence the Ron for the shot
Kelly says
Ann, you might want to google “Fred Davis” and “B12 is commonly misdiagnosed”…or google “Freddd” and “B12”, as Freddd is the name he goes by online. He was sick, b12 deficient for over 30 years, and was able to restore/resolve his neuropathy with HIGH doses of methylb12, and methylfolate, but he must take them every day. His story is really remarkable.
Kelly says
It should be emphasized that while Fred’s story is remarkable and commendable, he does indeed have to take massive doses of mb12 and mbfolate every single day, and unfortunately has a bad habit of almost ‘bullying’ those who don’t completely agree with his high-dose suggestions, or his insistence that glutathione is ‘toxic’.
Chris Kresser says
I agree. Fredd likely has some rare genetic polymorphisms that make his situation unusual. I think his protocol is probably overkill for most people, and may even cause harm if used inappropriately (i.e. it can lead to overmethylation). I think Rich Van Konyenberg’s protocol is a better starting place for most. And the idea that glutathione is toxic is difficult to accept, to say the least.
Dewey Stuve says
Hi Chris,
I was diagnosed with pernicious anemia a year ago. I was diagnosed with anemia for 6 yrs before they ran the test. I am now on B12 self injections of 1000mcg. I am still exhausted, and just no motivation. I am also HIV+ and have artificial heart valve due to birth defect. i am worried my Pernicious anemia was caught too late. What should I discuss with my doctor? I am currently 49.
Freddd says
Chris Kessler, There is all sorts of nonsense out on the web. I assure you glutathione is quite dangerous and can cause Subacute combined degeneration in 6 weeks. I repeat the warning frequently because glutathoone has bexome a FAD. It is quackery and dangerous to the neurological health of anybody taking it. The people claiming “relief” are having an effect on symptoms by destroying all active b12 in the body that isn’t in the mitochondria and causing massive folate deficiency via “methyl trap”. The people having relief have very strong responses to mb12, adb12 and Metafolin becasue they are desperately low. They get rid of the troublesome b12 and block methylfolate , their nerves numb out and they have relief. It is a very dangerous relief caused by damaging the the nervous system, both peripheral and central. The glutathione combines amost instantly to any unbound b12 converting it to glutathionylcobalamin and flushing it out in the urine very visibly and very quickly. I can demonstrate this very easily in anybody willing to volunteer risking something that will cause brain and cord damage. It is 100% predictable and repeatable if the directions are followed precisely. In people not currently in folate or b12 deficiency acute folate deficiency symptoms can start showing up in 2 hours, mb12 deficiency in 3 days and adb12 deficiency in 30-60 days. We ran a 10 subject trial. All 10 were having good results with the Active B12 Protocol. All 10 has the same response with timing variations. This was equally true for IV g;utathione, oral reduced glutathione, glutathione precursor pairs like NAC & l-glutamine (including commercially paired supplements), whey and NAC all by itself. The only difference was speed of onset which was based on dosage of glutathione and/or precursors. Further anybody already on it was 100% prevented from having any benefit from mb12,adb12 or Metafolin and these people were able to start healing after takling corrective doses of adb12, mb12 and Metafolin after discontinuance of glutathione. People getting all upset about theoretical possibility of a few mg of mb12 causing mercury toxicity were at the same time taking somethiong doing genuine brain damage to themselves. You know, In this game of YOU BET YOUR LIFE we each have to be self responsible and weed out what works and what is bogus information. Your life and quality of life depends upon the choices you make. Choose wisely. Now if you wish to characterize a delivery of information as bullying, that’s your choice. You are welcome to pursue dangerous fads if you want. If you want to ignore what works, that is your choice too. The information reaches far more than you.
As far as “rare gentic” polymorphisms, let;s consider that. The only one I can truely admit to being pragmatically proven is that like 20% of the population I can’t convert folic acid to methylfolate, or maybe like 30% of population I can only convert a small amount of folic acid to methylfolate leaving lots of unconverted folic acid in my system that competes with methylfoalte effectively blocking it. As the other 50% of population can only convert about 800mcg max of folic acid to methylfoalte they too can have folic acid blocking and outrun the converted folate supply in the body if they actually take some mb12 and Metafolin and switch on healing. Some of us also can’t convert folinic acid and that is even worse in it’s blocking effectiveness. Both folic acid and folinic acid can block up to 10 or more times as much Metafolin. As folini acid is the major folate in veggies, eating too many veggies can also put me into folate deficiency or insufficincy (same symptoms, not as severe). As this type of folate deficiency will always hinder b12 retention and use in the body, b12 deficiency always follows. This makes it very difficult to determine whether I actually have any b12 related polymorhisms at all. I appear to have the most serious form of folate polymorphisms, and this can be demonstrated. As I share that with at least 20% of population I wouldn’t exactly call that “rare”. You are repeating biased hearsay by Rich, somebody trying to protect their theories of a disease cause and treatment, which doesn’t work. He also does not suggest using glutathione but he is very careful not to step on the toes of true believers. I foresee a class action lawsuit in the future on glutathione and NAC” therapies” from people damaged by them. I think that Cerefolin with NAC is a time bomb of neurological damage I can tell you how to demonstrate each and everything I have said. It is highly predictiable and easily demonstrable. The main occurance with a 5 star mb12 and Metafolin is that it turns on healing, about 50mcg of mb12 is quite sufficient for that, and most people need 1500-3000mg of additional potassium for cell formation or they become symptomatic of low potassium even with serum potassium as high as 4.2 or 4.3, and there is usually an induced folte insufficiency. A typical startup pattern for somebody titrating starting at or below 50mcg is that the healing staeted by 50mcg requires 2000-3000mg of potassium supplement and 2-3mg of Metafolin.
As the effectiveness of the simplified methylation protocol is < 1:10,000 in producing actual recovery and that of the active b12 protocol is more like 1:2-1:10, I would love to see some suitable matched pair A-B crossover trials. The basic problem is that hydroxcbl is 100 to 10000 time less effective for EVERYBODY than a 5 star mb12 and adb12. Metafolin is 100% effective for 100% of population whereas folic acid and folinic acid are about -100% effective for some unknown percentage of poputation, 0% effective for at least 20%, 20% effective for 30% of population and perhaps 50% effective for 50% of population. It would appear that almost everybody with ME/FMS/CFS has one or more of the troubling folate polymorphisms. Research has shown that those with CFS/FMS have low Cerebral Spinal Fluid cobalamin along with those with ALS, MS, Parkinsons' Alzheimer's, Supra Nuclear Palsy. The pragmatic test for detecting these CSF deficiencies is easy. They can be spotted decades in advance of diagnosis. People who are on 1mg injection of cyanocbl a month for pernicious anemai are barely liveing zombies on that can be fully restored to health with mb12, adb12, metafolin, l-carnitine fumatate and the usual vitamins and minerals needed as a backround with avoidance of folic acid and folinic acid. Vegetable food folate problems can be overcome by taking 4mg of Metafolin at each meal. An perceived intensification of symptoms occurs as soon as mb12 starts working (5 minutes to a couple of hours) and is normal startup. People with anxiety as a symptom need to start titrating at 10mcg of 5 srtar mb12 and adb12 or so, others can start with 1mg of a 5 star mb12. The neurological damage pattern is different for those with anxiety. Admittedly I'm more comfortable with a database of a million or so persons. However, as the Active B12 protocol works in almost everybody with a selection of the 300 symptoms that it affects, you can hardly miss. It doesn't affect anybody in any way who doesn't have symptoms. Low potassium appears on the third day after methylation startup and cell reproduction startup, which occurs in hours after consumption.
Cate says
Freddd, very interested in what you’ve had to say about b12 deficiency. I am on anxiety meds and have b12 deficiency, but just taking oral supplements 1000mg daily. Used to be on injection every 3 months but not any more. Like you mentioned I have a heap of symptoms and had tests done for MS (but no lesions on brain), and various blood tests, was found to be vit D deficient. I have poor balance and lean to the left, numbness all over body, including burning sensations that ache alot, very weak when lifting things in hands and drop things all the time. My concentration is hindered as the numbness is bad on right side of my head and affects my right eye, ears face neck. I’m always rubbing the areas as they are itchy as well, have had tinitus for many years and regularly get lesions in my mouth (overnight new ones form). Feel like I’m falling apart. I have two teenage children and worry I won’t be around to see them grow up as I worry all the time as to whats wrong with me.
What do you suggest dosage wise, with Mb12, and adb12 and metafolin and potassium. I want to make sure I’m taking the right things to heal my nervous system before its too late. Doctors dont listen or help me, because no tests ever come back with any major concerns. Also how can I purchase these items (I live in australia), and have trouble obtaining. Is there a certified (genuine) website I can purchase them from. Thanks so much … Cate (44 yr old)
GregRJ says
Hi Kate, sorry to heat that your oral high dose supplements have not worked (think you mean 1000 ug/day, but no matter). Vitamin B12 uptake into cells requires special transport molecules, if the vitamin B12 does not get onto these molecules it is wasted and will not have lasting effects. This is why the injectable form of vitamin B12 only lasts for a short period of time. Similarly with the high dose vitamin B12 for oral, you get a very small amount across, but it is not on the transporter to take it into the cells that you need it in, so you will simply pee most of it out. Furthermore, as you elude to, you actually need the MeCbl and the AdoCbl (two different types of vitamin B12). For energy, the best is the AdoCbl.
I have heard of a topical (for the skin) rub-on for the AdoCbl, which uses neat technology to get the vitamin into the skin. I would suggest that you try this.
Freddd says
Chris Kresser, As to “overmethylation”, I have done a throrough analyssis of all the symnptoms said tpo result from “overmethylation” and esenntially 100% of them are the same active b12 and amethylfolate deficiency symptoms as the “undermethylators have. In fact most people with these deficiencies have approximately equal numbers of symptoms form both lists. To use the hypothetical risk of “overmethylation” (never ever seen it demonstrated even once in thousands of peole taking active b12s) to justify using hydroxycbl which at best paritaly corrects a few of the hundreds of actual symptoms and DOES NOT HEAL ANYBODY instead of taking the mb12/adb12 (adb12 is in no way connected with methylation but still gets blamed by true believers since it turns on the mitochondria and produces ATP and an energized feeling that gets attributed to methylation) which will correct, with the right cofactors most all of hundreds of symtpms, except actual damage which can heal to a large extent. I’m not in a wheelchair wearing diapers because I take 10mg sc injections 3 times per day of mb12. This has reversed subacute combined degenration in place since 1990 about 80-90% and has succeeded at holding it in remission for some years now, except for glutathione trial which furthered damage that has never recovered. Mb12 has one donatable methyl group comprising 1.3% of the molecular mass. The actual amount of methyl groups in b12 is almost inconsequential. If a person is concerned they can limit comsumption to the lowest zone of healing and only take 100mcg gross, perhaps 15mcg absorbed sublingually. That is the amount theoretically converted from hydrozcbl except that 100mxcg of mb12 plus Metafolin will start methylation in less than a week and healing and the signal potassium drop 3 days later. Hydoxycbl rarely starts healing and the time is unpredictable. When it does there is the usual potassium drop which is often called “detox”. Low potassium is dangerous and so misidentification of low potassium by calling it detox can cause problems up to and including death. It is also the 100% indicator that healing has started. Game theory would indicate that one is more likely to heal with something that starts the healing predictably instead of something that rarely starts the healing and never does much. A broken methylation system prevents healing as it prevents DNA replication with the mb12 and methylfolate as needed factors. Hydroxcbl has to be converted to mb12 first, and also needs the ATP genertated by adb12 for the enzyme to work. This turns into a vicious cycle as the pathway is hydroxycbl + enzyme + ATP > mb12 +enzyme and ATP > adb12. When there is MMA instead of ATP getting made, no conversion.
DDC says
Hi Freddd
I am a 48 year old female with an eight year history of Vit B12 deficiency. It started out as a numb and tingling right leg with serum B at 103. Weekly shots of cyano cobalamin and now eight years later, tremors, ataxia, muscle weakness and spinal cord degeneration. I also have a serious megaloblastic anemia. I have taken folate in the past, sporadically. I have taken vitamins, magnesium, calcium glucarate, Fish oil, etc.I am athletic, not overweight, have eliminated all toxins from the diet, and am still getting worse. my neurologist has put me on 1000 mcgs/day cyano and thinks I have cervical cord compression also. I am a chiropractor, and understand all nuances of spine and brain functions., and read everything there is to know about this disease, but cannot figure out the formula for healing myself. My MMA was less than 1.0 and my homocysteine was 7.9. I cannot whistle or sing anymore due to the spasm of my facial muscles. Pushups are no longer possible due to bicep misfiring. This is making me crazy, and really interfering in my life. With our vast knowledge of this topic, what would you recommend for me…. I have access to pretty much whatever I want from my doctors because they know I know what I am talking about. Thanks for any info on this crappy deadly disease.
DDC
Freddd says
Hi DDC,
http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics
This has all the basic information about the active b12 protocol. Having been on cyancbl for a while you will likely react with great vigor to mb12/adb12/metafolin. Before you can test for low CNS cobalamin you need to get at equilibrium in the body. Beware of low potassium around 3rd day after starting mb12 when all the delayed cell formation starts up. Have all the basic vitamins, minerals and in your vbody before starting the mb12. You can titrate from 50mcg or less if you have extreme reactions to mb12, adb12 or l-carnitine fumarate. Also, there will often be an induced low folate, worse if paradoxical folate deficiency exists too and Metafolin may need to be titrated along with the potassium. On that same Methylation menu as the BASICS list is a decision tree for identifying potassium and/or folate induuced deficiencies.
Kelly says
Freddd,
The problem with your hypothesis, is that you base most of your conclusions on your own case history, especially the ‘extended’ list of deficiency symptoms, many of which can be attributed to other vitamins. Just one example is angular chelitis, which is one of the main symptoms of riboflavin deficiency. Riboflavin is a key co-factor in many processes, and could very well be severely depleted in you due to your high intake of mb12, adb12, and methylfolate. I know you have others who have healed, at least on a temporary basis, as well, but please admit that most of your experiments, especially the ‘glutathione is toxic’ one, came about due to a trial of NAC (which is not glutathione) that you undertook yourself.
A Dr. Perlmutter has used glutathione injections to bring Parkinson’s patients ‘back to life’, for years now, with none of the negative effects you mention. As Chris said above, you likely have an inherited genetic disorder that has created a special situation for yourself and a small percentage of others. But that doesn’t mean that glutathione is “toxic” or creates a folate deficiency. Otherwise, these people getting monthly injections would drop dead on the spot. Doesn’t make sense.
Madge says
I totally agree with Fredd about over-methylation. It doesn’t happen. Even if one of your enzymes was more active, there is no way that you would stop taking methylCbl, as you would stop all of the other good methylations going on, like the production of methylArg in myelin basic protein, the synthesis of L-carnitine, creatine, etc, etc. To think that you can selectively stop one reaction is ludicrous.
shane says
Question for Dr. Chris Kesser,
I also have a polymorphism defect called MTHFR (I believe I have C677 and A1298, I need to do another test to confirm A1298 but I have all the symptoms and respond to the treatment protocol (this one is much more serious than the C677 (I think, IMO) because it has to do with not converting the BH2 to BH4 (Tetrahydrabiopterin) which causes a lot of neurological issues….
Can acupuncture help with genetic polymorphism mutations ??? That would great if it could….
Chris Kresser says
Hi Shane,
Just want to clarify: I’m not a doctor.
I can’t see how acupuncture would help with a genetic polymorphism.
Ali O. says
How do I find out about the test to know if I’m deficient?
Freddd says
Ali O., The ONLY test that is actually useful is going through that symptoms list on the Active B12 protocol basics and doing a trial of one of the two effective brands of mb12 and the adb12. That will give you the answer, between the symptoms list and the trial, 99% of the time. People without symptoms don’t have ANY response to mb12 or adb12 or metafolin or l-carnitine fumarate. Many people have responses who have forgotten about the symptoms long ago. None of the lab tests will tell you if mb12/adb12 will be effecrive for healing for a person. They only tell you when you are allready in terrible trouble and damaged. And that should be a “duh” since by then a person has 50-200 symptoms. I was dying from the deficiencies and damage and my test results were always “in range” or close, “nothing to be concerned about” said the docs.
Deb says
May I ask, What were your first symtoms? How low were you levels? My children are low 300 & 400 although know Doctor will listen. I take prescribed shots weekly. I am great now after 10 years of constant medical issues, including possible MS, almost having my colon removed and much more. I was in the 100’s.
I have a couple videos- http://goo.gl/0mOtb and http://goo.gl/eTCnc I don’t know if you seen them. I want to help my children 18 and 22 before they end up like I did.
Moongirl says
Deb,
Your videos are an absolute inspiration. I suffered from IBS for years along with vomiting, joint and muscle pain, an overwhelming sense of “malaise” all over my body, migraines and intense fatigue. I too would go between 20-30 times a day, sometimes as many as 15 days out of a month. I thought my life was over. There was no damage shown in my colonoscopy. I also had GERD for years and was on PPIs. I stopped the PPIs in January when I suspected that they were making me sick. Between Jan and March I was the sickest I have ever been. I finally found a Doctor who sat down and listened to me and ordered huge amounts of tests. Out of all the tests, my B12 and D were very low. My B12 was on the “low end of normal” but she gave me B12 shots anyway and I am doing so much better. Between the Vitamin D3 supplements and the B12 shots, I am starting to get better. I have lost 30 pounds since going off the PPIs and starting the shots. When I look back, my symptoms were always there, but I think when I was younger, I ate more of a variety of foods and was just stronger. I am now 40. My mother died when I was 32, but I remembered recently that she had been on B12 shots too. She didn’t get diagnosed until she was 60.
Making a video like that is a great idea. If I continue to improve, I will do the same. It is so inspiring to see the physical transformation, as well as the smile on your face. Thank you for sharing your story.
Deb Hickey says
MoonGirl,
Thank you for watching. People like you truly inspire me also!It has been a while may I ask how you are doing? I hope you do make a video!!! I lost my Father 18 years ago he was 54 and his mother passed at 43. I to this day wonder if if they had the deficiency, unfortunately I will never know. Please let me know how you are doing you can contact me [email protected] if you would like. I wish you well!
Deb
CW says
Ann, If you don’t mind me asking…..What made your neurologist think you had MS? I have recently been diagnosed with extremely low B-12. Just started getting shots once a week for 4 weeks and will soon have more tests done to try to figure out why it’s happening or whats causing the problem. I was seeing a neurologist myself for headaches, but they never mentioned MS with my issues.
david says
Ann, I understand what you are going through. I was just diagnosed with extreme b12 deficiency and have had tons of nerve pain in hands, fingers, arms, legs and have to have shots and oral. I am worried that this pain is permanent because others have stated it doesn’t come back. I have had pain for years and it would come and go but the last year it has been really bad and now my hands and fingers ache all the time. My wife is a RN and doesn’t seem to believe it when it comes to pain, I have had several broken bones, lacerations, operations, kidney stones, and other conditions but I have healed this condition states nerve damage doesn’t reverse itself. Prayers for both of us
alicia says
i feel your pain im 28 just finding out now that i have a b12 issue im devastated that i wasnt diagnosed sooner considering the amount of bloodwork i had done during my pregnancy it makes me furious my level was 106 how did nobody catch this i havent felt myself at all for months and im afraid that its to late to fix all my cognitive issues 🙁
Michelle says
I was recently diagnosed with extremely low B12 levels. I was also diagnosed with MS in 2001. I found a new doctor recently and he wanted blood work done before I could get my yearly Rx re-done and that is when he discovered I was B12 deficient. I have been taking injections for 7 weeks now and the feeling in my hands have almost returned to normal. It has been over ten years since I have felt the tips of my fingers. Wow eh.
Greg says
Hi Michelle,
What a great story. Have you conveyed this to the local MS society. Generally they totally ignore all the data that suggests the MS can be correlated with low VB12 levels. You must be ecstatic to get your feeling back. Do you know what form of VB12 you were injected with, and the dose? Are you going to stay on the injections, or what has he suggested?
sharon says
hi ann
I also have the same diagnosis as you, life can be so miserable must admit lots of symptoms and this defeciency is on the rise.
Sharon says
This article does not give any signs or symptoms that i suffered from the last two months,…tingling, numbness of toes on both feet, burning sensations for hrs. On the tops f both feet,,, at first i thought it was my MS , then others suggested diabetes but i did not have any other symptoms of diabetes…then i thought it was related to Mortons neuroma but foot doctor ruled that out.. I did more research and found that since i had not been eating right it was a B-12 deficiency.. I then went to pharmacy and bought B-12 vitamins and just about 3 days after taking them the burning sensation stopped, numbness in toes went away too after 5 days.. i then started to eat better, eggs for breakfast every day, meat, chicken, veggies fruits…tuna, fiber foods
. I had been taking multi vitamins but then found out they only have 2.6 mg of B-12 …you need more then that if you are not eating properly like I was…
meryl dell says
Have you found anything to heal your damaged nerves?
jerry adams says
My neurologist says my nerves are dead – irreversible. I must learn to live with pain management for the rest of my life, she says. I am hopeful that she is wrong, but …. suppose the nerves regenerate. Which ones will come back: the ones that cause the pain now so my pain will increase or the one that MIGHT make the pain go away? I’m not positive I want to take the chance that the pain would be worse if the nerves regenerate. Who knows what will happen? Maybe it’s better to live with the devil I know than risk the devil that I don’t know. Anybody out there got any input? I welcome some encouraging words.
Madge says
There is a product sold by b12oils that has a curcumin derivative in it (which is supposed to stimulate nerve growth), plus Ado/MeCbl plus vitamin D. All of these have potential to stimulate nerve growth – I believe.
Molly Malone says
I am not a doctor, but nerves will heal and they DO regenerate. Feed your body what it needs, including supplements, and it will perform as best it is able, which is usually a lot better than people believe. Nobody can say to what extent you can heal, but you can heal.
Nerves don’t work the way your statement implies, please don’t worry. There aren’t special pain nerves. “Few, if any, of the receptors of heat, cold, and pain are specialized transducers. Rather they are sensory neurons whose plasma membrane contains transmembrane proteins that are ion channels that open in response to particular stimuli. A single neuron may contain several types of these ion channels and thus be able to respond to several types of stimuli.” Go ahead and heal as much as you are able, don’t stress yourself further over something that isn’t even true.
[http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/P/Pain.html]
I have read that malic acid (sometimes called apple acid because it is found in apples) helps with pain. I bought some off Amazon, in bulk so it is pure powder, and use 1/4t once or twice per day. It does help with pain a bit, not a total cure for me. Also 5-HTP (5-Hydroxytryptophan) helps. It elevates serotonin in the brain naturally, which chronic stress depletes. It helps people to sleep better as well. These bits of info are from Billie J. Sahley, Ph.D, CNC and her book “A Natural Approach to Fibromyalgia and Chronic Fatigue”, P. 12, 14, 20-25. I recommend her books, they are on Amazon or elsewhere online.
The herb/spice turmeric is both pain relieving and anti-inflammatory. It works well, but over time it thins blood. This may or may not matter, depending on how much a person uses, and for how long, but here’s my experience: My husband used turmeric and vitamin E to thin blood, and it worked so well that after 10 months he began to have spontaneous nose-bleeds. Not really dangerous but not a lot of fun either. We reduced the E, then the turmeric and he was fine. The higher dose was 6 capsules from Organic India in divided doses, and 4 of A.C. Grace’s Unique E. He now takes half of each, 2 of vitamin E and 3 of turmeric. This and a few other changes has kept him off meds after 2 heart attacks and a massive stroke. I hope something here helps.
Will says
Hello I can’t post on the main page for some reason.
I’ve been suffering from ms like symptoms for some about 2 and a half years now. I’ve had mri with some white stops present. But spinal tap normal. And still seeing nuro regularly.
However about 4 years ago my b12 levels where low. And recently after some blood test my b12 levels are low 171 however my gp says I am not b12 deficient because my red blood cells are normal. Can you be b12 deficient and have normal red blood cells? Also what other reasons could be causing this. I am a meat eater and always have been. Many thanks will
Madge says
Hi Will, the first thing I would do is to get another doctor who actually knows anything about B12 deficiency. You definitely are B12 deficient from you levels. Sub-clinical deficiency starts at 340 ng/L (250 nmol/L). It will be almost impossible to get your levels up by any oral supplementation with B12, so you will either needs injections of B12 (which you will need a doctor for) or if I was you I would use the oils from b12oils. You may not be able to convert OHCbl to the active forms Adenosyl and methylB12, so you will do best with the mix of Ado/MeB12. FYI by the time you are so low that your RBC data is low you are very, very, very deficient.
Phyllis says
I’m one of the pieces of evidence. I was diagnoses with pernicious anemia 8 months ago. By B12 level was 119. Other blood factors confirmed it was pernicious anemia. I’ve been taking monthly shots ever since and feel much better. I’m not a vegan or an older person.
Saf says
I was diagnosed with it nearly a year ago, when I was 20. I’m 21 now. My level was 89 I think? The blood test was for something else but it picked up the deficiency. I didn’t feel the effects of the deficiency at all, but am now.
Dana says
From a lab test. $60 now versus who knows how many thousands later because you didn’t catch it in time.
Jesse says
But with that logic, apart from knowledge of how likely the condition actually is, you could spend thousands on all sorts of tests for hundreds of rare conditions that just might cost you thousands later if you happen to have them.
Chris Kresser says
Jesse: what are you talking about? The test costs $16 (when I order it for patients, at least). I referenced the Framingham Offspring Study in the article, and a few others. If you want more references, go search Pubmed. You’ll see how common B12 deficiency is and how often it is misdiagnosed. Read the book “Could it Be B12” that I referenced – plenty of references in there. You can do what you want, but I think most people exhibiting signs and symptoms consistent with B12 deficiency would prefer to spend about fifteen bucks to rule it out than go years undiagnosed and suffer irreversible neurological damage – as some people who’ve commented very sadly have.
gregory barton says
If the condition is not rare, as you claim, and the effects are potentially severe, simple common sense would dictate spending the money irrespective of the symptoms. How many times would one need to do the test? Presumably once would be sufficient.
I am amazed how many simple tests are omitted in my annual blood checkup. Thyroid tests, for one, are not on the list. Yet the test is inexpensive and simple to do.
I would appreciate a list of basic blood tests to consider as part of an occasional checkup.
Martyn Hooper says
The problem here lies with the efficacy and accuracy of the tests currently being used. The serum B12 test doesn’t differentiate between ‘Active B12’ and ‘Inactive B12’ – Holotranscobalamin and Holohaptocorrin. A person can have as much as 90% of their total B12 as the Inactive type – that plays no part in the biological processes involved and just, as one physician put it, “hangs around the liver doing nothing”.
Similarly the Intrinsic Factor Antibody Test is only around 30 – 40% accurate. I tested negative twice before testing positive. Not many patients get tested three times and if they test negative on the first test they are routinely diagnosed with something else. 14% of the Pernicious Anaemia Society’s members were wrongly diagnosed with having Depression and 30% remained undiagnosed or wrongly diagnosed for over ten years.
There are serious problems with the tests being used and this is leading to people, lots of people, being wrongly diagnosed.
Chris Kresser says
Martyn: I couldn’t agree more!
Jacquie says
Hi i live in the uk and was diagnosed with B12 aneamia in october 2011. My B12 levels was 133. GP put me on 1 B12 injection a week for 10 weeks (i had the last one on 3rd jan 2012). I was then retested for FBC,B12,Folate & COAG on 10th jan 2012. My B12 count has now come in at 884 and my doctor was shocked at the high levels and has now said i cant have another B12 injection until 3 months time. I had every symptom for pernicious aneamia but within 3 weeks of starting the injections they started to dissapear gradually. I have now not had a B12 injection for 2 weeks and am back to square one – all the symptoms are back, they started to slowly come back the day after i would have normally had my weekly injection. I have been up since 2.30 this morning with insomnia, pain all down my left side (legs,arms,hip,hand and fingers), headache and i just sat there crying. I thought i was getting somwhere and now back to where i started. My intinsic factor was tested and this came back negative. Any advise would be great.
Kira says
Chris, then what would be THE VERY BEST TEST you can do to determine is you are deficient? I have been having tingling and pins and needles sensation in my left leg, really scary, and my Doc wanted to test me for MS… which is very expensive and exhausting and I am not convinced this is the answer. Thnx for everything!
Rose says
Hi Martyn
I don’t disbelieve you about 90% of a B12 test showing inactive B12, but where did you get this information from? Can you direct me to a legitimate site so I can present this info to my doctor as I believe I am B12 deficient. Although my reading is way over the top end of normal for B12, my RBC count has been tracking downwards for 3 years and is now only just above the lowest end of normal. I started taking sublingual drops of methymalonic B12 yesterday, but only 5mcg.
Rose says
Oops. Slight mistake. The sublingual drops I’m taking are 50mcg and I’ve decided to take 1000mcg a day. My B12 test result was 1360 but I have to assume this is wrong as my RBC count is only 4 and I am as white as a sheet. Also my hands and feet are tingling. Am I irresponsible taking 1000mcg of B12 a day?
Martyn Hooper says
Go to the website of the Pernicious Anaemia Society (watch the spelling). In the Download Section are a series of Powerpoint slides that prove this. There are also presentations by Prof. John Scott of Trinity College Dublin and Dr. Anne Malloy of TC Dublin that prove this.
Rose says
Am so grateful for your information, Martyn. Read my newest post on my progress!
Martyn Hooper says
The Active B12 Test is now available in London. It costs slightly more than the normal and misleading serum B12 test.
GSTS
4th Floor
North Wing
St. Thomas’ Hospital
Westminster Bridge Road
LONDON
SE1 7EH
Office Hours Tel. 020 7188 4778 Out of Hours Tel.020 7188 7188
Freddd says
The bound active b12 test is no better. Most of the healing is accomplished with unbound active b12 at 1000 times the level of the bound b12.
If you try a 1mg or 5mg 5 start b12 you will know within 2 hours if you have any response in 85% of everybody who will benefirt from active b12s. It takes effect that fast. Take the rest of the bottle for a month and most everybody else that doesn’t find out in 2 hours will know in 30 days. The symptoms list used as qustionaire can identify body-mb12, body-adb12, CNS-adb12 and CNS-mb12 deficiencies along with folate deficiencies.
Marion Keith says
Need to know more as I have a problem and need B12 as you believe will help
Nan says
Hurrah Martyn! I was going to post similar information then read your reply.
I was told twice, after having taken the serum B12 test, that my levels were fine, meanwhile my heart was pounding*, my brain struggling, and my body aching BECAUSE I had pernicious anemia.
The heart pounding was so severe I went to a cardiologist who ran me through tests and found a blockage – I was rushed into surgery where they performed a heart cath then realized it must have been breast tissue that appeared as a blockage. An expensive and unnecessary procedure all because of my pounding heart and because that darned serum test gives misleading results.
Fortunately a thyroid doctor ran the Intrinsic Factor Antibody Test which uncovered the pernicious anemia.
I have tried all three forms and have had to shop for a doctor who would prescribe hydroxo and methyl.
Cyano – left my body wanting;
hydroxo – the shots hurt even when compounded but my body liked;
methyl – my body responds well to.
I believe this condition developed because of undiagnosed celiac disease which, in retrospect, hammered me for years.
Kira says
Fredd, where can I find this form of B12 to try?
Jason Ibe says
In regards to spirulina, have you come across any significant evidence confirming any benefits of taking this on a daily basis? I take this first thing in the morning on a daily basis and do feel good from it. Enjoy your work and the podcast!
Chris Kresser says
No, I haven’t come across any peer-reviewed research indicating a benefit. My main concern about it would be the source and whether it’s reliable. I remember reading a news article a while back about a sample of spirulina they tested that had neurotoxins in it.
Susan says
So what is the name of the test for B12 that is the best one? Who do we order it from online?
Beth says
Dr Louisa Williams (www.radicalmedicine.com), who tests supplements in numerous ways for purity and effectiveness, recommends a form of algae she calls “Russian Algae” or BioSuperfood, and something called Quinton Marine Plasma.
Lynn_M says
The literature on BioSuperfood does make it sound like a wonderful product. Since it’s grown in an enclosed bioreactor, I felt very comfortable with it’s purity, so I purchased it. Spirulina Pacifica and Spirulina Platensis are two of the four ingredients in BioSuperfood. I have since read that the B12 in spirulina is an analogue to the form we need. Not only can our bodies not use the analogue, but the analogue competes with the forms our bodies can use.
So I stopped taking it for now, because I am homo for the MTHFR A1298C mutation and I don’t want to take a chance of having the BioSuperfood compete with the methylcobalamin and adenosylcobalamin I take.
Does anyone know if taking spirulina would be deleterious to someone that is dependent on supplementing the active forms of B12?
R says
I agree with Chris
I got vitamin b12 injection couple of days ago and renewed energy is amazing. Its a game changer. I also feel less depressed, more energetic and raring to go . I am mostly vegetarian and never realized i need b12 till now. Injections work better than oral vitamin supplement.
Tracy says
I’m 46 and was diagnosed with Pernicious Anemia 3 years ago. I have been on the IM injections for all this time and my symptoms are still getting worse. I can’t lift a tea pitcher with 1 hand anymore and every 2 hours I need a nap or will black out. My hands and feet are almost always asleep feeling and just getting up to stand is problematic. Should I be talking to my doctor about upping my dose of B-12 or am I now in what is called the “end stage” of the disease? I remember being hyperactive and full of energy as if it was someone life other than my own. This disease is real and people should be checked. My arthritis doctor was the only person that thought it could be this and was very aggressive in treating me but I feel that I’m losing this fight. Any ideas of what I need to do to try and get back to some normality if life?
Tracy says
I should also say that my Pernicious Anemia was caused because I developed ulcers in my stomach that were severe at age 15 and have been on stomach meds ever since. I have no absorption through the abdominal regions at all.
Phyllis says
This is not really a rare condition. Unfortunately, it took years for me to be diagnosis, seeing multiple doctors and really pushed to get any of them to take me serious. The doctor that finally did some tests was shocked and apologetic when we got the results of the tests. None of the doctors thought I was at risk because I eat so well and live a very healthy life style. I’m not the only one that has encountered these obstacles.
gregory barton says
Further evidence for the proposition that one must take ultimate responsibility for one’s health and not delegate the responsibility to doctors.
TMAC says
My father just got diagnosed with B12 deficiency and will need monthly injections for the rest of his life. He is in his mid-60s. He has an active lifestyle, he’s a butcher, and we eat meat EVERY day (we might skip meat twice a year max). Nevertheless, his level was 88 which is VERY low. Trying to find out next doctor’s visit if it’s linked to pernicious anemia. I’m in my mid-30s, I grew up eating meat every day (never fish, usually chicken, pork or beef). In university, for convenience and lack of cooking equipment, I switched to mainly chicken (almost daily) and within 6 months I was diagnosed with low iron levels. I’m frequently tired, have a lack of energy and other symptoms but the doctors usually try to talk me out of or refuse to get full blood work done and just tell me to eat more red meat or eat when I get unusually and quickly tired for no apparent reason. These issues DON’T only affect the old or vegetarians, they are very real and have had a very real impact on our lives both as individuals and as a family.
Chris Kresser says
That’s absolutely right. I should point out that most of my patients eat meat (Paleo type of diet), but several have B12 deficiency caused by absorption problems.
Dee says
I was recently Diagnosed with B12 deficiency, I am lactose intolerant and tended to stay away from red meat as my family has a history of heart disease. So I suppose those who are also lactose intolerant may also be at a higher risk as well.
Jane says
Hi TMAC
I was 43 when I started having symptoms of fatigue, numbness and tingling but was still active. Drs. thought it was MS and all the tests they did all came back negative. Two years went by not knowing what was causing this until a dr. wanted to help me and did more tests this time including a b12 test. And that was the cause. My level was 41. Drs. have never seen someone with that low b12 and still functioning or alive. The downside is my nerves were damaged permanently and I have other symptoms too. I take Nascobal now a nasal spray along with oral folic acid and my level has benn in the 800’s. I’m now 50 and have to use a cane or rollator when out. My balance is extremely bad.
But I also eat alot of red meat (i can’t stay away from it). Does your dad have gait problems?
Zena says
I’m 42 and just found out my B12 level is 40 and reading your message, I’m trying to get information and knowledge from people who have this or how it affects people, with other medical issues I’m slightly overwhelmed, so any advice or info will be gratefully received 🙂
thank you
zena
Sheau Vun says
Do you have tingling now?
Tracy says
I’m curious-are you getting injections? If not, you should be. 800 is not really high for B12 (if you were saying that was your b12 level not your folate level). Serum b12 is not a good indicator of how much active b12 is actually in your system. If you have severe symptoms, it might be a good idea to get injections more often until the symptoms show no more improvement. Depending on what kind of b12 you are given (cyanocobalamin, which is used in the US, hydroxocobalamin is used in UK) would determine how much more to take. Cyano, once a week, hydroxo, every other day. Your doctor will try to discourage you, because standard protocol in US is once a month and UK is once every 3. Protocol doesn’t really address the symptoms, and for the most part, doctors are really not very informed when it comes to B12 deficiency and especially Pernicious Anemia. With a level that low, you are most likely PA, but the IF test is probably 50/50 for accuracy, so even if it comes up negative, you most likely still are. Doctors will tell you that you can overdose on B12-you can’t. B12 is a water soluble vitamin and any excess is excreted. Studies have been done using extremely high doses of b12 with absolutely no side effects. Some people may have an allergic reaction to an injection, but that is usually a reaction to the mixture, not the vitamin. If you are PA, you cannot absorb b12 from food or oral supplements, and only injections will help. If you have questions, I have found this facebook group to be incredibly helpful. https://www.facebook.com/groups/PAB12DSupportGroup/
Angela says
Hello,
Many people can be Vitemin B-12 Deficient, not only the elderly and vegans, but those who eat meat and the young as well. I am 23 years old and suffer from severe B-12 deficiency and must be given B-12 shots for the remainder of my life. I am not vegan nor am I vegetarian, the problem lies within. My body lacks the ability to absorb B-12 from my food. I have suffered from terrible headaches, twitches, trembles, muscle weakness, stiffness, body pain, random large bruises, short-term memory loss, blue skin under the nails, low red blood-cell count and I do not have the sensation of needing to urinate until it feels as though my bladder is about to burst. I will be undergoing more tests soon to learn what the low B-12 has damaged. Please do not think only the elderly or malnourished people get this disease, be tested!
patineuse says
Im very interested by your comment about random bruises. I had a bllod test in Spetember which showed slight B12 deficiency (142)- I have had fatigue and depression symptoms plus I now have a “rash” that looks like dark brsuising behind my Knees- these patches have been there for some months . I am wondering if it could be a symptom of the b12. My doctors has not given me injections – she asked me to up my food intake of B12 ( I am a veggie but was eating lots of cheese and milk – i have now added back fish)) for 3 months then we will see what my next bllod serum level is in December.
jane Mckinney says
I have had injections for the past 12 years for B12 deficiency im not a vegetarian and dont come under any of the catorgories mentioned they did test after test but i simply cant keep it in my system.
Tori says
I’m living proof you don’t have to vegetarian or vegan to have B12 deficiency. I’m 17 and I was just diagnosed and the first question my doctor asked was how long I had been vegetarian and I was kind of confused because I’m not and I eat eggs and meat daily.
Helen says
But you might be gluten-intolerant and the gluten could be causing malabsorption. That’s what happened to me. Gluten ruined my intestines so I wasn’t absorbing much of anything. I had been low on iron for several years, with no explanation, because I ate meat 3x per day. BTW, my B12 tests were low too, and so I was supplementing with sublingual but it wasn’t enough. I ended up with neuropathy along with several other symptoms. My doctor was useless. Scoffed at the idea of a gluten-free diet and never suggested a B12 shot.
Moltened says
Thats a fine theory but keep in mind that suboptimal thyroid function could be causing lack of enzymes and weak stomach acids that can’t break down the gluten protein and perhaps there is a progression to more of a leaky gut situation that might have occurred. The whole proteins are making it into the blood stream by passing through an inflamed stomach lining where they are attacked by the immune system causing detectable antibodies.
Thyroid disfunction is notorious for causing low iron and there is often a B vitamin issue as well. This is my situation.
Kim says
Hello, this sounds like me, and I also have Rheumatoid Arthritis on top of this, and definitely a leaky gut. I am suppose to go for a Myers Cocktail injection, B injections. I do have the MTHFR factor as well. Any suggestions, for me, I have been taking HCI for my stomach acid and enzymes too. I want to heal my gut and inflammation, and the Natural doctors don’t seem to be helping me fast enough. I eat nothing processed only fresh foods. My thyroid is off again, I have anemia, and malabsorbtion problems and eat organic.
Any help would be great!
Sharon says
I woluld start taking kelp. It is a natural source of iodine and should help your thyroid and it is amazing when your thyroid gets enough iodine how much better you feel. Your hair gets lustrous and your skin gets better. a majority of people in USA are deficent in magnesium so you might try taking that.
Deb Hickey says
I’m living walking proof….
I hope my story will inspire you!
http://www.youtube.com/watch?v=CH-N3ktF25g
Sharon says
I too have eaten meat and had a deficiency though it is worse when I don’t eat meat. But before it was diagnosed I had other health issues for years that doctors didn’t understand or know what to do with. These promptly disappeared when I started methyl b12
Amanda says
Hi Jesse,
Anyone taking Losec or any other antacid (even over the counter ones) will also have issues absorbing B12, also, people who have had stomach surgery that affects production of intrinsic factor, such as a gastric sleeve or gastric bypass, stomach cancer survivors who have lost part of their stomach, also people with bowel disorders such as IBS, Crohns or Coeliac Disease as the foods rich in B12 tend to go right past the small intestine section that absorbs the B12, people who don’t eat much red meat and prefer to eat chicken or fish, people like myself with pernicious anaemia.
B12 is a really safe supplement to take so boosting your intake isn’t going to cause any harm and may end up bringing an overall improvement to energy levels, sleep, mood and in my case, also stops me randomly passing out and falling over like a drunk person. 🙂
Toodles,
m
Karen says
Low stomach acid (Hypochlorhydria) or no stomach acid (achlorhydria) is a common cause of b12 deficiency. If you don’t have enough stomach acid you can’t break down the proteins in foods and extract the b12 (as well as other stuff such as calcium iron and d3) It is estimated that as many as 30% of a population is low in stomach acid and therefore have the potential to be b12 deficient whether symptomatic or not. How you would want that evidencing I’m not sure.
My b12 deficiency is due to hypochlorhydria.
The test used to establish if you have it is the salivary VEGF test. It’s available in the UK but I’m not sure about anywhere else.
fhman says
You are smart to question the claims written here since at least some of them are false.
The claim that B12 comes only from animal sources is false. Firstly B12 is only synthesized by bacteria and Archaea. No animal or plant can synthesize it. We can get B12 from anywhere that has the right bacteria growing. The issue is our over clean modern environment has removed a lot of these sources.
Studies such as the one linked to below show that in the right circumstances natural non animal sources can be utilized
http://www.ncbi.nlm.nih.gov/pubmed/8926531?dopt=Abstract
Molly Malone says
Did you actually read that entire study? Online I can only access the abstract, which 1 – claims that there were 6 test subjects which is hardly a large or significant population. 2 – we know precious little about the testing method done: “In addition, their serum vitamin B12 levels and other data (red blood cell count, hematocrit, hemoglobin, etc.) were determined in the laboratory.” All we really know is that their blood serum level was measured. Haven’t we learned here that some of these methods are highly suspect and often highly inaccurate? We actually know nothing about the testing methods used. ‘Nuff said.
“Because bacteria produce vitamin B12 and fermented foods are generally fermented using bacteria, there are many rumors regarding vitamin B12 being in fermented foods. To my knowledge, no vitamin B12-producing bacteria is required for any fermented food and, therefore, any fermented food that contains vitamin B12 does so via contamination. Because the human colon contains vitamin B12-producing bacteria, it is possible for B12-producing bacterial contamination to occur during food preparation, particularly in places that do not have high levels of cleanliness. To my knowledge, no fermented plant food in Western countries has been found to contain relevant amounts of vitamin B12 analogues.” [http://www.veganhealth.org/b12/plant]
In their conclusions it was stated “Unless uncleaned, organic produce is shown to lower MMA levels, it is unjustified to claim that B12 can be obtained in such a manner, or to claim with certainty that humans have ever relied on it as a source of B12.” [http://www.veganhealth.org/b12/plant]
At http://www.breathing.com/articles/vitamin-b12-vegan.htm several studies were looked at where the opposite of your statement turned out to be true: “Davis points out Dagnelie’s21 1991 study showing that nori and spirulina did not improve B12 status. Until better methods are found, Davis suggests that the adequacy of B12 in algae must be measured by whether it can reverse B12 symptoms. According to Davis, so far, no algae has been shown to do this and two have failed in their initial testing. Dagnelie24 (1997) also responded to Rauma et al., pointing out that the available evidence indicates that B12 in algae is not bioactive in humans.”
“B12 is found almost exclusively in animal foods such as liver, kidney, meat, fish, shellfish, milk products and eggs but the original source of B12 in nature is bacteria, the only creatures able to manufacture this vitamin. In humans and animals, these bacteria produce B12 in the colon; however, little if any is absorbed across the colon wall so we must get our B12 from animal foods. Bivalves such as clams, mussels and oysters contain high levels of B12 because they siphon large quantities of vitamin B12-synthesizing microorganisms from the sea. Production of B12 supplements involves fermentation procedures similar to those used for penicillin and other antibiotics.
Interestingly, while eggs contain B12, they also contain substances that block absorption, a fact that leaves only milk as a good source of B12 for vegetarians. Some studies indicate that B12 is better absorbed from milk than from meat. However, one source indicates that B12 in milk is destroyed by boiling. Analysis of B12 in pasteurized milk reveals only a 10 percent loss; however pasteurization deforms the milk proteins that aid in B12 absorption.”
http://www.westonaprice.org/health-topics/abcs-of-nutrition/vitamin-b12-vital-nutrient-for-good-health/
Veganism is as good a belief to hold as any other, but unless the diet is supplemented properly it is a dangerously health damaging one just for the B-12 deficiency alone. While it is true that there are vegan populations in India, this is neither a healthy nor a clean country and their B-12 and protein status has been attributed to the contamination of their food with insects.
Eat any way you see fit, but take care when you do so, particularly if you eliminate an entire group of foods, fully half of all that people traditionally eat.
Greg says
I totally agree, although I would add that the B12 that you obtain from meat, whether it originally be derived from gut bacteria or not is almost entirely methyl and adenosylcobalamin, which are the two biologically active (in man) analogues. One must be very careful about the claimed identity of B12 in any food stuffs other than lamb, beef, pork or other meats. Many of these alternative B12 sources are cross-reactive in B12 binding assays, but are not biologically active in man and may in fact contribute to the haptocorrin-bound corrinoids that lead to faulty high readings in many subjects. The presence of these “corrinoids” can actually be detrimental as they can compete for uptake of ado and MeCbl from dietary meat and milk. In such foods the B12 is generally bound to one of the intracellular binding proteins. It must be released from these proteins by the action of gastric acid and pepsin, otherwise it is not bioavailable in humans. This is the reason that ant-acids are such a problem, especially PPIs. They stop the release of the acid that is responsible for break-down of the binding protein. In addition they also stop the secretion of intrinsic factor that it required for uptake via the IF receptor.
Jane says
8 years ago I started feeling tired, had numbness an tinglingling in my feet. I went to a couple different neurologists they thought it was MS. After having blood trests, spinal tap and a couple MRI’s, they could not find what causing this. Two years went by and I went to an internal medicine dr. and he did an MRI and bloodwork but this time checked my B12 level and my B12 level was a
severe low of 41. He started me on B12 shots but by then there was permanent nerve damage. For eight years I have trouble walking even with a cane or walker and my balance is extremely gotten worse. Instead of taking injections I take a B12 nasal spray called nascobal. My B12 level has been in high 800’s. I wish they could’ve caught it in time cuz it’s very hard for me to do the things I used to do. Dr.’s I’ve seen have said they have never seen anyone with a severly low B12 level as mine was and was still doing things and still alive.
shirley says
Hi! Jane I have just been diognosed with B12 deficiency of only 11.I am just starting injections twice a week. No wonder I didn’t feel all there
Vicki Glasbrenner says
People with MTHFR mutations cannot use B 12 from foods, myself included. 40 to 70% of the population has one or more mutations.
Elise says
Recent studies are showing that there is B12 in mushrooms
http://freefromharm.org/health-nutrition/vitamin-b12-in-mushrooms-not-exclusive-to-meat-dairy/
Madge says
I wouldn’t hang your hat on getting much from mushrooms. If you get the absolute highest supply there is around 1 ug/100 gm dry weight, so around 1 ug/kg of mushrooms. Now the European guidelines suggest you should have 6 ug/ day, so that is around 6 kg of mushrooms, which is quite a big wok to cook them in. Now if you get the low levels mushrooms, there is only 0.02 ug/100 gm, so you would need to eat 300 kg of mushrooms. You wouldn’t stop eating, plus the environmental impact of every vegan eating mushrooms to get sufficient B12 would be horrendous. Still you have to explore these avenues.
Greg says
I agree with Madge, although it was a bit strong. One of the real problems with the mushroom work is that they often don’t definitively state which vitamin B12 analogue it is. As far as I know (and please let me know if I am wrong), I have never seen any paper suggesting that adenosyl and methyl cobalamin are in mushrooms. I am happy to be corrected though. The other problem is that often there are bacteria associated with the mushrooms and we know that they can make vitamers (analogues) of vitamin B12. I
Deena key says
I am 66 years old and was diagnosed with CMT 20 years ago. I had them check my B 12 many times and it was always high. Two years ago I stopped eating Gluten and all leg pain stopped. After hearing you explain the connection I got some B12 shots from Pic Med. the first one made my legs hurt all night. The next day was wonderful. That night and for six weeks I slept like a baby. Deep sleep. After Five days my toes that would not move bent completely over. I told my Dr. They sent me to Hematologist that found low in Folic Acid but nothing else. He discouraged me about taking more shots. After one week I will feel very tired again. I have been taking one once a week. I took one everyday for two months. I want to continue getting better. I could not walk outside the house without AFO’s now I am going shopping. Any help would be greatly appreciated. Thanks for your video you have without it I would not be getting better. Deena Key
Nan L says
I’m also your proof!! I along with so many others are proof if you take some time to investigate the net. I was recently diagnosed with B12 autoimmune disease with nerve damage as well. I started complaining in my late 20’s, I’m now 46. About 2 years ago i went to my doctor and told him i can’t take the pain anymore; after testing he told me i had fibromyalgia. Recently however, it got to the point where i couldn’t walk with ease. I was using walls to lean against, anything to help me walk. Standing was difficult, i felt like i was going crazy. I went back to my md and he did the b12 blood work – sure enough, I have B12 autoimmune. As so many other, the nerve damage could have been prevented with better blood work testing! Since the medical standard sets the line far too low for B12 limits I feel rather ripped off from what should be healthy years of my life! I say a class action suit would surely get someones attention here, this is my life, your life…it’s insane that i/we have to live with this now. Anyhow, i receive injections monthly, am on a daily supplement and in the process of figuring out why I have the dificiency but am told i will require shots for life and the hope is to eventually eleviate the pain. Here’s hoping! All the best to you and your situation.
Greg says
I agree about the levels. I don’t know about your class action, but something definitely needs to be done to educate the doctors. There are many, many papers stating that sub-clinical deficiency starts at 340 ng/ml (250 pmol/L). Data on brain shrinkage shows that even at 400 ng/ml (300 pmol/L) the brain shrinks by 2% per annum in those over 50. The trouble is that the pathology labs average up their data and they only flag your data if you are outside their 95% confidence limits. This is why the definition of deficiency is different from country to country and from diet group to diet group. It makes you wonder why bodies such as NIH don’t step in and have it changed. As they say “go figure”. It is up to the group to educate others. Another problem is that even in the general community most B12 deficiency signs are passed off as ageing.
laura says
I’m living proof too. I’m 24 I was diagnosed with b12 and folate deficiencies after colonoscopy and endoscopy which showed that I had helicorbactor pylori. I had underlying b12 before this stomach virus but had more issues such as pins and needles, memory loss, fatigue etc. After the eradication therapy.