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: Their signs and symptoms can all be mimicked by 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 nutrient 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?
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. #B12 #B12deficiency #cognitivedecline
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.
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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.
A common myth among vegetarians and vegans is that it’s possible to get B12 from plant sources like:
- 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)
Seaweed is another commonly cited plant source of B12, but this idea is controversial. Research indicates that there may be important differences in dried versus raw purple nori; namely, raw nori may be a good source of B12, while dried nori may not be. One study indicated that the drying process used for seaweed creates B12 analogs, making it a poor source of the vitamin, while animal research suggests that dried nori can correct a B12 deficiency. (10, 11) Seaweed may provide B12, but it’s not clear if those benefits are negated when that seaweed is dried. I recommend caution for that reason.
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. (12)
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 or high-dose oral cobalamin indefinitely. This may also be true for those with a severe deficiency that’s causing neurological symptoms.
Typically in the past, most B12 experts recommended injections over high-dose oral cobalamin for people with pernicious anemia and an advanced deficiency involving neurological symptoms. However, recent studies have suggested that high-dose oral or nasal administration may be as effective as injections for those with B12 malabsorption problems. (13, 14)
Try Supplementing
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. (15, 16) On top of that, methylcobalamin provides the body with methyl groups that play a role in various biological processes important to overall health.
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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.
Can someone who has MS benefit from B-12 Injections?
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.
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.
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.
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!
FREDDDD whAT do you know of Dr. Amy Yasko and methylation
@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!
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.
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?
??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
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.
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
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.
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!
Margaret, what brand probiotic do you use- or do you know which bacteria it contains? I am looking for the right one.
Thanks!
Mary
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.
@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.
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.
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.
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 😀
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
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.
Yes, 190 is frank B12 deficiency. There’s nothing equivocal about that.
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!
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
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.
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.
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.
Apologies for mis-spelling of your name, Dr. Kresser!
Chris is not a doctor (not even close), and but still . . . he should address this with you
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.
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
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.
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.
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.
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).
Fred,
How can one get injectable methylcobalamin? Do you need a compounding pharmacy?
Thanks,
B12 Girl
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.
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.
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.
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
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.
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.
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.
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
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
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 😮
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
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. 🙁
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.
Thank you Bill!!! I appreciate the follow up!!! =)
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.
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!!!!