What do all of these 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 illness (depression, anxiety, bipolar disorder, 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 vitamin B12 deficiency.
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, B12 deficiency is far more common than most health care practitioners and the general public realize. Data from the Tufts University Framingham Offspring Study suggest 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. 9 percent had 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.
That said, B12 deficiency has been estimated to affect about 40% 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, decreased mobility, etc. – are at least in part caused by B12 deficiency.
Why is B12 deficiency so under-diagnosed?
B12 deficiency is often missed 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 B12 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 B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency).
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.
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 B12) 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 B12 deficiency. Long before anemia sets in, B12 deficiency causes several other problems, including fatigue, lethargy, weakness, memory loss and neurological and psychiatric problems.
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).
Why is B12 deficiency so common?
The absorption of B12 is complex and involves several steps – each of which can go wrong. Causes of B12 malabsorption include:
- intestinal dysbiosis
- leaky gut and/or gut inflammation
- atrophic gastrits or hypochlorhydria (low stomach acid)
- pernicious anemia (autoimmune condition)
- medications (especially PPIs and other acid-suppressing drugs)
- alcohol
- exposure to nitrous oxide (during surgery or recreational use)
This explains why B12 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 2-3 times a day.
In general, the following groups are at greatest risk for B12 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
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 amongst vegetarians and vegans is that it’s possible to get B12 from plant sources like seaweed, fermented soy, spirulina and brewers yeast. But plant foods said to contain B12 actually contain B12 analogs called cobamides that block intake of and increase the need for true B12.
This explains why studies consistently demonstrate that up to 50% of long-term vegetarians and 80% of vegans are deficient in B12.
The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age 6 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:
…a significant association between cobalamin [b12] status and performance on tests measuring fluid intelligence, spatial ability and short-term memory” with formerly vegan kids scoring lower than omnivorous kids in each case.
The deficit in fluid intelligence is particularly troubling, the researchers said, because:
…it involves reasoning, the capacity to solve complex problems, abstract thinking ability and the ability to learn. Any defect in this area may have far-reaching consequences for individual functioning.
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 than adults.
Treatment of B12 deficiency
One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment is relatively easy and cheap – especially when compared to treatment of the diseases B12 deficiency can cause. A B12 test can be performed by any laboratory, and should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com for $60.
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 severe B12 deficiency 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. However, most B12 experts still recommend injections for people with pernicious anemia and advanced B12 deficiency involving neurological symptoms.
Cyanaocobalamin is the most frequently used form of B12 supplementation in the US. But recent evidence suggests that hydroxycobalamin (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 the neurological sequelae of B12 deficiency, and that it may be better absorbed because it bypasses several potential problems in the B12 absorption cycle. On top of that, methylcobalamin provides the body with methyl groups that play an role in various biological processes important to overall health.
If you suspect you have B12 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. This is something you’ll probably need help with from a medical practitioner. 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.
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{ 441 comments… read them below or add one }
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?
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.
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.
I am only 23 and suffer from severe b12 deficiency.
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
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.
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?
Sounds like you aren’t absorbing oral B12. You may want to switch to a sublingual form of methylcobalamin at a higher dose.
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.
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.
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.
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.
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”.
Thanks for the info Freddd – where can I find the symptom list you mention at the top of your post ?
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.
Thanks Freddd – out of interest do you offer any kind of phone / skype consultation service ?
Mark
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.
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
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
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.
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’.
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.
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.
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.
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.
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
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.
How do I find out about the test to know if I’m deficient?
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.
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.
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.
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.
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.
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.
From a lab test. $60 now versus who knows how many thousands later because you didn’t catch it in time.
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.
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.
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.
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.
Martyn: I couldn’t agree more!
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.
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.
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?
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.
Am so grateful for your information, Martyn. Read my newest post on my progress!
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
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.
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.
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!
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.
So what is the name of the test for B12 that is the best one? Who do we order it from online?
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.
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?
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.
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.
Further evidence for the proposition that one must take ultimate responsibility for one’s health and not delegate the responsibility to doctors.
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.
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.
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.
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!
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.
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.
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.
I’m living walking proof….
I hope my story will inspire you!
http://www.youtube.com/watch?v=CH-N3ktF25g
http://www.youtube.com/watch?v=3EiUWPwz6Co&feature=related
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
I agree, Elisabeth. This is particularly tragic in light of the fact that B12 deficiency can be so easily and cheaply diagnosed.
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?
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.
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
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!
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?
FCLO does not contain significant amounts of B12. I recommend approximately 1 mg/d of sublingual methylcobalamin for those with intestinal absorption issues.
The highest sublingual tablet I can find has 3000 micrograms, I would need 333 tabs to arrive at the 1 gram daily dose!
Ack! Serious mistake on my part. The dose is 1 mg, NOT 1 g. I’ll fix immediately.
Unfortunately, it won’t work for people who can’t absorbed it through the digestive track.
“Sublingual” doses are primarily absorbed through the mucous membranes in your mouth.
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.
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.
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.
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.
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.
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?
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.
Irene, I don’t have any experience with it. But I recommend methylcobalamin in general.
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.
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.
Fixing mine too! …1000mcg….not 1000mg!
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
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.
I don’t see a need for ongoing supplementation for those without deficiency or absorption problems, assuming adequate dietary intake.
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…
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.
Hey Chris
Are you confusing nitric oxide with nitrous oxide?
Good catch, Michael. Not confusing them, just mis-typed it.
my trouble all started after i had alot of dental work done i really think it was the gas
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.
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.
Thanks Chris. I’ll look into it.
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…..
Chris – as always…you rock!
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
Simon: 10 mcg is an inconsequential dose of B12. 500 – 1000 mcg in methycobalamin form each day would be a more suitable dose.
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.
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
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!
Yes, supplementation with B12 is safe since toxicity is extremely rare, especially if you avoid cyanocobalamin. Unfortunately, some damage from B12 deficiency is irreversible.
Why do you say “if you avoid cyanocobalamin?”
I ask because that is (currently) my main form of B12 supplementation.
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.
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.
I just updated the sentence.
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.
How can the form which is least well-absorbed, also be the only culprit in toxicity?
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.
It’s also the least effect most worthless form of cobalamin that at best will keep somebody crippled and limping along.
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.
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.
Hi Chris…….Can you tell me what 1369 pmol/L is in pg/L? Thanks.
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.
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.
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?
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!
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.
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’?
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.
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!
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.
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!
I recommend people eat 3 oz. of liver 2 times a week.
If one isn’t partial to straight liver, pate, fois gras?
I’m pregnant and wondering if I should cut down my dose to only 3oz per week.
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?
500 – 1,000 mcg per day of methylcobalamin is a good dose.
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?
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.
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?
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?
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.
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.
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.
What would be useful detective work for people with confirmed B12 deficiency? A Schilling test? A blood test for gluten antibodies?
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.
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?
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…?
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.
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.
Chris, would you suppose a serum B12 level of ~300 *could* cause deficiency symptoms?
Your blog = great stuff, per usual!
Absolutely. The studies are clear on this.
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.
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?
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.
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.
I found some studies that link B deficiencies to autism and posted them here…
http://findingtherootcause.blogspot.com/2011/05/mthfr-and-autism.html
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.
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.
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.
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.
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.
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.
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.
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?
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
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.
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
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!
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.
oh and we are waiting for the heavy metals test results too. No stone unturned.
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
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
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.
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.
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.
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/
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.
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.
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.
Here is some evidence presented that cyanocobalamin is not poorly absorbed:
http://www.michaelmooney.net/Vitaminb12comp.htm
Any truth to this?
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,
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…
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.
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.
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.
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?
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.
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!
I prefer sublingual methylcobalamin.
Okay. I will ask if he has that. If not, is there a place/brand you’d recommend?
Oh, and what dosage of the sublingual methylcobalamin.?
Source Naturals has a sublingual B12 that is methylcobalamin.
And… Source Naturals offers it in a 1mg tablet and a 5mg tablet.
Thanks Mark!!
I’m just curious … I bought the 1mg, but my vitamin guy said I should be taking the 5mg. Any thoughts on this?
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.
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?
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.
Please Jan, did you ever check your vitamin D3…if you did not, you must. It is really essential
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?
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.
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.
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.
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.
Have you tried injections with the same result?
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?
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.
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.
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
Jan, To recover my feet I have to maintain my cobalamin serum level at about 200,000pg/ml.
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
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?
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….
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”!!!!!!!!!!!!!
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.
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.”
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.
I meant two weeks of daily. oops
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!!
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
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
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.
Can’t B12 be obtained from animal feces?
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.
Your doctor would not order the test? Why?
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.
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
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.
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
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*
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!!
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?
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
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.
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
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.
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.)
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!
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.
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
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
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!
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.
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.
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,
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!
No particular brand, but the form is important: methylcobalamin.
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?
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?
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.
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
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
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!
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 ??
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!
If you have the MTHFD gene, there is a possibility it could lead to pernicious anemia too.
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
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.
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.
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.
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!
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.
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?
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
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?
Here you go http://www.pamrotella.com/health/b12.html
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
No response to the post that I made that was more that two words?
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
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.
Oh, and all my blood panels are spot on, as is my weight, etc. Just so you know.
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.
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.
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.
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.
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.
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.
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.
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.
Thank you for sharing Lucia! (and to all who do on this site). Your third paragraph hits close to home for me.
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.
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.
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.
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.
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.
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.
One thing is to question information, something else is to attack information and the people providing it.
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?
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!
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!!!!!
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.
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.
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.
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.
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.
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.
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
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…
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!
I would do more testing.
Thanks Chris!!
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.
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.
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.
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.
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
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.
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?
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!!!
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.
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.
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.
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.
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.
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.
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.
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.
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
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
Have you had your anti-parietal cell antibodies tested? If you have pernicious anemia, addressing the immune dysregulation is key.
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.
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.
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.
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.
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?
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.
Oh, it took about 6 months for me to bring up my b12 levels from 220-5** on 1000mcg/day.
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.
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
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.
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.
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.
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.
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!
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?
There are better ways to treat it than injections now. Feel free to make an appt to discuss.
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!!!!
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?
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?
Urinary methylmalonic acid, along with serum B12, are the best ways to determine B12 deficiency.
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
You can check directlabs.com and privatemdlabs.com. You can order blood tests directly from them.
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?
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.
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.
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.
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.
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.
Mark – Did your LDL come down on supplementing with B12 AND Vitamin D..i too have the pins and needles..please help me Mark.
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 !
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?
sorry that wasn’t me !
hi Mark
Did your LDL come back to normal after the b12 and vitamin D supplements? Can you share your email id?
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
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
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
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.)
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
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…
Deb, I wanted to view your video, but it s set to private.
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
Thank Deb!! I am so glad you are better!! HUGz!
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
Thanks for the video Deb. Really inspirational.
*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.
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
Do you think there is any connection with B12 deficiancy and essential tremors of the head?
I haven’t seen direct evidence, but the mechanism is plausible.
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?
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.
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!
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
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.
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?
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
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.
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
You can try something like this: http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0
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.
See my post above on February 21, 2012 at 11:36 am….
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.
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?
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.
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.
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
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
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!
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.
Thank you Chris!
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.
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.
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!
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
Oops! I missed your thyroid reading. Doesn’t sound like that’s a problem for you.
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!!
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.
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
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!!
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
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?
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
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?
Douglas Labs Magnesium Citrate
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!
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
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.
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?
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
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 …
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
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)
Thanks for your reply Chris.
Really appreciated. Will do the neccessary.
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.
Yes, I have seen it help with RLS and neuropathy is a classic symptoms of B12 deficiency.
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. :/
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..
Hi I am a practitioner of Acupuncture,please try this ancient modality,you will be surprised.
Pls reply in details to santel51@yahoo.com
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.
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.
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
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.
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.
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.
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.
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
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
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.
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
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.
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.
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.
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.
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.
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
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.
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.
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.
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!
Does B-12 have an impact on Parkinsons Disease? AND, can you give yourself the shots?
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.
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.
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?
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.
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.