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A Silent Epidemic with Serious Consequences—What You Need to Know about B12 Deficiency

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Published on

Reviewed by Chris Masterjohn, PhD

This tired man rubbing his eyes may be experiencing B12 deficiency.
Fatigue is a common symptom of B12 deficiency.

What do all of these chronic diseases have in common?

  • Alzheimer’s, dementia, cognitive decline, and memory loss (collectively referred to as “aging”)
  • Multiple sclerosis (MS) and other neurological disorders
  • Mental illnesses like depression, anxiety, bipolar disorder, and psychosis
  • Cardiovascular disease
  • Learning or developmental disorders in kids
  • Autism spectrum disorder
  • Autoimmune disease and immune dysregulation
  • Cancer
  • Male and female infertility

Answer: Their signs and symptoms can all be mimicked by a vitamin B12 deficiency.

An Invisible Epidemic

B12 deficiency isn’t a bizarre, mysterious disease. It’s written about in every medical textbook, and its causes and effects are well-established in the scientific literature.

However, the condition is far more common than most healthcare practitioners and the general public realize. Data from a Tufts University study suggests that 40 percent of people between the ages of 26 and 83 have plasma B12 levels in the low normal range—a range at which many experience neurological symptoms. Nine percent had an outright nutrient deficiency, and 16 percent exhibited “near deficiency.” Most surprising to the researchers was the fact that low B12 levels were as common in younger people as they were in the elderly. (1)

That said, this type of deficiency has been estimated to affect about 40 percent of people over 60 years of age. It’s entirely possible that at least some of the symptoms we attribute to “normal” aging—such as memory loss, cognitive decline, and decreased mobility—are at least in part caused by a deficiency.

Why Is It Underdiagnosed?

B12 deficiency is significantly underdiagnosed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low.

This is why most studies underestimate true levels of deficiency. Many deficient people have so-called “normal” levels of B12.

Yet, it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL—levels considered “normal” in the U.S.—have clear vitamin deficiency symptoms. (2) Experts who specialize in the diagnosis and treatment of a deficiency, like Sally Pacholok, R.N., and Jeffrey Stuart, D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. (3) They also recommend treating patients who show normal B12 levels but also have elevated urinary methylmalonic acid (MMA), homocysteine, or holotranscobalamin, which are other markers of a deficiency in vitamin B12.

B12 deficiency can mimic the signs of Alzheimer’s, dementia, multiple sclerosis, and several mental illnesses. Find out what this vitamin does and learn how to treat a deficiency. #B12 #B12deficiency #cognitivedecline

In Japan and Europe, the lower limit for B12 is between 500 and 550 pg/mL. Those levels are associated with psychological and behavioral symptoms, such as:

  • Cognitive decline
  • Dementia
  • Memory loss (4)

Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.

What Is Vitamin B12 and Why Do You Need It?

Vitamin B12 works together with folate in the synthesis of DNA and red blood cells. It’s also involved in the production of the myelin sheath around the nerves and the conduction of nerve impulses. You can think of the brain and the nervous system as a big tangle of wires. Myelin is the insulation that protects those wires and helps them to conduct messages.

Severe B12 deficiency in conditions like pernicious anemia (an autoimmune condition where the body destroys intrinsic factor, a protein necessary for the absorption of the vitamin) used to be fatal until scientists figured out death could be prevented by feeding patients raw liver, which contains high amounts of B12. But anemia is the final stage of a deficiency. Long before anemia sets in, deficient patients will experience several other problems, including fatigue, lethargy, weakness, memory loss, and neurological and psychiatric problems.

The Stages of a Deficiency

B12 deficiency occurs in four stages, beginning with declining blood levels of the vitamin (stage I), progressing to low cellular concentrations of the vitamin (stage II), an increased blood level of homocysteine and a decreased rate of DNA synthesis (stage III), and finally, macrocytic anemia (stage IV). (5)

Common B12 Deficiency Symptoms

The signs can look like the symptoms of several other serious disorders, and the neurological effects of low B12 can be especially troubling.

Here are some of the most common vitamin B12 deficiency symptoms:

  • Tingling or numbness in the hands and feet
  • Brain fog, confusion, and memory problems
  • Depression
  • Premature aging
  • Cognitive decline
  • Anemia
  • Weakness
  • Fatigue
  • Reduced appetite and weight loss
  • Constipation
  • Trouble balancing (6)

Children can also show symptoms, including developmental issues and learning disabilities if their B12 levels are too low.

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Why Is It So Common?

The absorption of B12 is complex and involves several steps—any of which can go wrong. Any of the following can cause B12 malabsorption:

  • Intestinal dysbiosis
  • Leaky gut and gut inflammation
  • Atrophic gastritis or hypochlorhydria, or low stomach acid
  • Pernicious anemia
  • Medications, especially proton pump inhibitors (PPIs) and other acid-suppressing drugs
  • Alcohol
  • Exposure to nitrous oxide, during either surgery or recreational use

This explains why a deficiency can occur even in people eating large amounts of B12-containing animal products. In fact, many of my patients that are B12 deficient are following a Paleo diet where they eat meat two or three times daily.

Who Is at Risk for a Deficiency?

In general, the following groups are at greatest risk for a deficiency:

  • Vegetarians and vegans
  • People aged 60 or over
  • People who regularly use PPIs or acid-suppressing drugs
  • People on diabetes drugs like metformin
  • People with Crohn’s disease, ulcerative colitis, celiac, or IBS
  • Women with a history of infertility and miscarriage

Note to Vegetarians and Vegans: B12 Is Found Only in Animal Products

You cannot get B12 from plant-based sources. This vitamin is only found in animal products. That’s why vegetarians and vegans need to know the signs of deficiency—and the steps necessary to fix the problem.

B12 is the only vitamin that contains a trace element (cobalt), which is why it’s called cobalamin. Cobalamin is produced in the gut of animals. It’s the only vitamin we can’t obtain from plants or sunlight. Plants don’t need B12, so they don’t store it.

A common myth among vegetarians and vegans is that it’s possible to get B12 from plant sources like:

  • Fermented soy
  • Spirulina
  • Brewers yeast

However, plant foods said to contain B12 actually contain B12 analogs called cobamides that block the intake of and increase the need for true B12. (7) That explains why studies consistently demonstrate that up to 50 percent of long-term vegetarians and 80 percent of vegans are deficient in B12. (8, 9)

Seaweed is another commonly cited plant source of B12, but this idea is controversial. Research indicates that there may be important differences in dried versus raw purple nori; namely, raw nori may be a good source of B12, while dried nori may not be. One study indicated that the drying process used for seaweed creates B12 analogs, making it a poor source of the vitamin, while animal research suggests that dried nori can correct a B12 deficiency. (10, 11) Seaweed may provide B12, but it’s not clear if those benefits are negated when that seaweed is dried. I recommend caution for that reason.

The Impact of a Deficiency on Children

The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age six on a vegan diet are still B12 deficient even years after they start eating at least some animal products. In one study, the researchers found an association between a child’s B12 status and their performance on testing measuring:

  • Spatial ability
  • Fluid intelligence
  • Short-term memory

Researchers found that formerly vegan children scored lower than their omnivorous counterparts in each area. (12)

The deficit in fluid intelligence is particularly troubling, the researchers said, because this area impacts a child’s ability to reason, work through complex problems, learn, and engage in abstract thinking. Defects in any of these areas could have long-term consequences for kids.

I recognize that there are many reasons why people choose to eat the way they do, and I respect people’s right to make their own choices. I also know that, like all parents, vegetarians and vegans want the best for their children. This is why it’s absolutely crucial for those that abstain from animal products to understand that there are no plant sources of B12 and that all vegans and most vegetarians should supplement with B12.

This is especially important for vegetarian or vegan children or pregnant women, whose need for B12 is even greater. If you’re not willing to take a dietary supplement, it may be time to think twice about your vegetarian or vegan diet.

How to Treat a Deficiency

One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment are relatively easy and cheap—especially when compared to the treatment patients will need if they’re in a late stage of deficiency. A B12 test can be performed by any laboratory, and it should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com.

As always, adequate treatment depends on the underlying mechanism causing the problem. People with pernicious anemia or inflammatory gut disorders like Crohn’s disease are likely to have impaired absorption for their entire lives and will likely require B12 injections or high-dose oral cobalamin indefinitely. This may also be true for those with a severe deficiency that’s causing neurological symptoms.

Typically in the past, most B12 experts recommended injections over high-dose oral cobalamin for people with pernicious anemia and an advanced deficiency involving neurological symptoms. However, recent studies have suggested that high-dose oral or nasal administration may be as effective as injections for those with B12 malabsorption problems. (13, 14)

Try Supplementing

Cyanocobalamin is the most frequently used form of B12 supplementation in the U.S. But recent evidence suggests that hydroxocobalamin (frequently used in Europe) is superior to cyanocobalamin, and methylcobalamin may be superior to both—especially for neurological disease.

Japanese studies indicate that methylcobalamin is even more effective in treating neurological symptoms and that it may be better absorbed because it bypasses several potential problems in the B12 absorption cycle. (15, 16) On top of that, methylcobalamin provides the body with methyl groups that play a role in various biological processes important to overall health.

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Change Your Diet

Nourishing your body through whole food is the best way to get the vitamins and nutrients you need. If you’re low on B12, try eating some vitamin-rich foods like:

Eating other kinds of seafood, like octopus, fish eggs, lobster, and crab, can also help you attain normal B12 levels. If you’re seafood-averse, you can also get this vitamin from:

  • Lamb
  • Beef
  • Eggs
  • Cheese

It’s important to note, though, that the amount of B12 in these foods is nowhere near as high as the levels in shellfish and organ meats.

What to Do if You’re Experiencing Vitamin B12 Deficiency Symptoms

If you suspect you have a deficiency, the first step is to get tested. You need an accurate baseline to work from.

If you are B12 deficient, the next step is to identify the mechanism causing the deficiency. You’ll probably need help from a medical practitioner for this part. Once the mechanism is identified, the appropriate form (injection, oral, sublingual, or nasal) of supplementation, the dose, and the length of treatment can be selected.

So, next time you or someone you know is “having a senior moment,” remember: It might not be “just aging.” It could be B12 deficiency.

1,962 Comments

Join the conversation

  1. Hi guys,
    posted a couple months ago when I was initially diagnosed with B12 deficiency.
    So I really think I might have neuropathy. The symptoms eased a lot when I first started getting injections, however lately I have been experiencing some agonizing foot pain. Now I do work part time as well as attending university, which means I’m on my feet a lot, especially at work. But this pain is unbearable. In work I find it so hard to walk and I want to cry with the pain. It’s the usual kind of niggly pains I’d associate with B12, like shooting stabbing pains, mostly in my feet, but it does hit in random spots all over my body. My feet also tingle a lot.

    I’m waiting to bring this up with my doctor, but has anyone any similar experiences? The combination of B12 I’m on is neocytamin, should I be on a different combination?

    The other day as well I got this really strange bolt of electricity up through my left arm and it was numb and tingly for a few minutes. I’m really worried I have a serious neurological condition or something! Any thoughts, experiences etc, will be greatly appreciated!

  2. Very informative article. B12 can help with a host of other issues as well, such as healthy hair and skin and even protecting against cancer. If you really want to see some cool results, look into Lipovimino. It is a cocktail of B vitamins, MIC, and amino acids that can help to restore energy, prevent aging, burn fat and so much more. You can find the benefits of both of these here http://www.agemanagementoptimalwellness.com/injectablesupplements.html . You will also find a tid bit on Glutathione which is the Mother of all Antioxidants and will help the results on B vitamin injections.

  3. I am 22 and I am very afraid of this. My mom has MS and it took a very long time for the doctors to figure out what was wrong…I wish there was a way I could help her with things, she has had a very rough time. I am afraid I my get it to, What exactly should I be doing to try to prevent it? :/

    • Sorry Nicole, I was probably a bit rushed with my previous answer, so let me try to clarify it. The latest evidence suggests that people with mutations involved in methylation have a higher incidence of MS than the rest of the population (this explains the genetic linkage quite well). Methylation is required for proper formation of the myelin sheath around neurones, apart from all the other things. Vitamin D and vitamin B12 are both required for stimulation of nerve growth factor production, so if these levels are low then NGF levels are low and so it is hard to repair nerve damage. Both vitamins are also required for correct mitochondrial functioning (which is low in MS), so you need to keep your levels high. Now women have a higher incidence of vitamin D deficiency around the time of puberty, which helps to explain why they have a higher incidence. So in short, given that you can’t change your genes, you need to make sure that you vitamin D levels are above 100 and that you vitamin b12 levels are well above 300 pmol/L. You can also get preliminary evidence of MS from mental score functioning such as can be seen with the now popular Lumosity brain training (no I don’t have shares in it). Email me if you want further info.

  4. This is all quite fascinating to me! There is one major cause that you didn’t mention at all, though… A mutation of the MTHFR gene. It’s estimated that 40-50% of the population has one or more mutations go this gene, but thus far it’s not widely recognized or treated. This is something I have recently been diagnosed with and because it causes you not to process folate & b12 the effect is symptoms of being folate & b12 deficient and can cause a wide variety of health issues.

    • Hi Jamie,
      You are so right about the mutations not only in the MTHFR gene, which many concentrate upon, but also in other methylation related genes. As for the incidence, it is arguably highest in the countries that have been supplementing with folate for some time. This the homozygous mutation rate is around 166-18% in the US, but in India, where they don’t supplement it is only 3%. In addition, whilst folate supplementation has reduced spina bifida and associated spinal development conditions by 30%, autism spectrum disorders have increased by over 8-fold since folate supplementation, and possibly this will get worse. FYI and for others I have been trying to update some of the chemistry etc involved, which you can see at
      http://vitaminb12deficiency.net.au/
      http://www.vitaminb12deficiency.net.au/VB12MTHFR.htm
      Please let me know if there is other information that may be useful that I can add to the site.

      • Greg,
        Don’t you mean folic acid supplementation in the form of enrichment of breads? It’s so important that we are very clear on folic acid vs folate especially when we are talking about MTFHR. I can’t tell you how many people get diagnosed with MTHFR mutations and are told by their doctors to TAKE FOLIC ACID! UGH!!!! Folate is what they should be taking, specifically methylfolate.

        • Hi Mary,
          An interesting technical point, which is worth discussing. Technically folate and folic acid are in fact the same molecule, but the discussions on the web would not lead you to believe this. Thus folic acid is the unionized form of unmethylated folate. When you change the pH of a solution of folic acid (R-COOH), the material becomes ionized, at which time it is known as Folate (“-ate” being understood as the carboxylate ion R- COO-). So if you use sodium hydroxide to alter the pH it would be known as sodium folate (Na+Folate-). Now in the folate cycle all the other forms of folate have different names (how can see that on the diagrammes on the link). Thus you have folate, dihydrofolate, tetrahydrofolate, 5,10-methylenetetrahydrofolate (the first methyl form) and then as you say 5-methyltetrahydrofolate. Now in solution in the body they will be at around pH 7.0, so they will all be in the ionized form (or the “-ate” form).
          In the standard multivitamin supplement, the form you will find is generally folic acid, which is the unionized form This is actually the form that will be in the stomach anyway, as the low pH of the stomach ~pH 1.0 will definitely produce the unionized form. Thus, even for the 5MTHF it will be 5MTHFolic acid, when it is processed in the stomach. Once it reaches the small intestine, the pH rises and so the majority of the folic acid and the 5MTHFolic acid with be the “-ate” form. Thus, in the stomach it will be in the “ic” form, but it will be the “ate” form that you will absorb.

  5. Just got on line to order some more B12 oil but the site is no longer operating due to issues with supply and payment.ive nearly run out as my daughter is also using it now.does anyone know if the sites closed permanently or if i can get it from another supplier.In Australia nobody has heard of it in the city i live in.

    • Hi to all,
      Yes the web-site was shut down on the week-end. There were several issues that I should not go into.
      The current company directors are working through putting up a web-site that more accurately reflects the product and the wishes of those who have been using it. Hopefully this will be within 2-4 weeks.
      In the meanwhile if you do want supplies please contact me directly and I will endeavour to get stocks released. Contact at [email protected]

  6. Does eating cooked liver as good as raw liver, and how much daily should one take? I just started taking injections 2 month ago

    • Hi Robert,
      I gather that you are deficient in vitamin B12. Do you know why? I gather by your wish to eat liver, that it is not because you are a vegan or vegetarian. If you are deficient due to antibodies to intrinsic factor, or similar, then you will not really absorb much vitamin B12, no matter how much or what you eat. IF is the most important of the vitamin B12 transport proteins and if you have antibodies to it you basically won’t get any uptake. You also won’t get much uptake if you have had a bowel resection, have Crohn’s disease or other IBD’s, or are taking ant-acids. I would suggest if you want an alternative source of VB12 to avoid injections that you use the TransdermOil product available at http://transdermoil.com/products/transdermoil-b12 Many of us are using this product, which has turned out to be surprisingly good.

      • Hello Madge
        I have no problem taking injections as my daughter is a nurse. I just started taking injections 2 months ago, as I had tingling in my finger and toe tips, and took a blood test and my Doctor put me on 1000 mgms/per month injections. How often should blood test be taked to check Picogram level?
        Many thanks
        Robert C

        • Hi Robert,
          Testing serum levels is a great idea, but to get better evidence of efficacy it is perhaps better to get your serum homocysteine and MMA levels tested. These tell you if you are having functional sufficiency. Thus, depending upon why you are deficient can determine how you respond to injections and how well they do. It would also be better to have little more often as far as restocking you body with VB12. This depends on why you became deficient in the first place.
          You can tell if you are restocking or maintaining your levels by measuring in the week or day before you take you next injection. If you levels are getting higher with time that is great. If you basically just going up and down, then I woudl look at an alternative way of getting the VB12 as it means that for half the month you are actually still low.

          • Hi Madge
            Thanks for your information about testing, I will bring it up with my Doctor. How often should a test be taken? I was thinking about 6 month intervals, what is your advise?
            Many thanks
            Robert

            • Hi Robert,
              Sorry been away. As for testing, well every week would be too often, but probably if you were to do it after one month, particularly if you want it to be signficantly different from the last time. Mind you, within in the month you should probably experience some differences anyway. I’ve seen a paper sent to me by Greg, where even at levels of 400 pg/ml they were still seeing brain shrinkage. Also if you have been low, you need to restock your stores in the brain, which apparently is very slow and needs a constant slow drip of high dose VB12. Apparently (well so he thinks) that is one of the main advantages of the TransdermOill Ado/Me Cbl mix. You will have to wait for that to come back on sale though.

  7. Is it possible that with a level of 326 I could still be suffering from symptoms of deficiency??? It appears in this country anything over 200 is considered normal. I’ve had the relevant part of my intestines removed, so I can’t help but wonder. Are you able to offer an opinion Chris Kresser?

    • Absolutely it is. Check out the book “Could it Be B12: An Epidemic of Misdiagnosis” in which she says that anything under 450 can show symptoms.

      • Hi Hails, it is actually quite hard to determine from a simple blood analysis if you are sub-clinically deficient. Sub-clinical deficiency starts at around 400 ng/ml, so you could be deficient. You almost definitely will be deficient if you have had a significant part of your ileum removed. Similarly if you had had lap-band surgery for weight loss. You will probably also find that you gradually become deficient in other B group vitamins as they are pretty much all absorbed in the same area. VB2 deficiency will give you similar symptoms as too will hypothyroidism, so you probably need to check that out as well.

  8. My latest number is 290 and I was told just to take 1000 a day. Is that sufficient? I took shots prescribed by my neurologist years ago.

    • Hi Lorraine,
      I recently saw a paper where they reckon that you still get brain shrinkage if you levels are as low as 400. Also there is a big correlation between dementia and low VB12, so I would get the levels as high as possible. This is particularly relevant if you have any signs at all of deficiency, such as incontinence, memory lapses, brain fog, unsteadiness on your feet, an inability to stand on one leg with your eyes closed, shakiness or tremor in your hands, macular degeneration, etc, et. In a way it is best to have the symptoms as they are a warning. What is worse is to have low VB12 levels (below 300) and not have symptoms, because you will almost certainly be doing damage and increasing your risk of dementia and cardiovascular disease.

  9. From Wikipedia: “Only bacteria and archaea have the enzymes required for its synthesis, although many foods are a natural source of B12 because of bacterial symbiosis” and “Industrial production of B12 is through fermentation of selected microorganisms. Streptomyces griseus, a bacterium once thought to be a yeast, was the commercial source of vitamin B12 for many years. The species Pseudomonas denitrificans and Propionibacterium shermanii are more commonly used today.” So vegetarians of all ages, children and elderly included, can remain healthy by taking readily available B12 supplements, no need to eat meat.

  10. Does anyone know how long the numbness last? I started taking b12 shots approx 8 weeks ago. I waited 2 weeks before I started with the numbness b/c I thought it would go away. LOL. I still have the numbness and it’s driving me crazy!!

    • Hi Patty, from what I can glean, it seems to depend on how long you were deficient before you were treated. For some reason some people can get really low before they have any “real” symptoms. In the time it takes to get that bad they are doing so much damage to things such as their nerves. If you have real nerve damage it may take months or even years to get better. In this time you have to make sure that you still keep taking both the methyl and adenosyl forms of vitamin B12. Most of us should be on them for life, particularly as we age. I trust that you didn’t get cyanocobalamin shots, they are so much less effective than the Ado/Me VB12. Try to think of it as having to replace all the defective insulation on your nerves, molecule by molecule – boy what a task.

  11. Hi everyone,well same old story went to the Dr today and asks for my levels to be tested before I have an injection and continue with using b12 oil.Dr said its not necessary to be tested every 3 months and refused to do so.since diagnosed in June I’ve been tested for pernicious anaemia and had to really convince another Dr to test my active b12 and Mthfr gene.my levels were high last tests and she tells me 1 injection every 3 months and maybe tests once a year. I wasn’t expecting tests every 3 months ,I just trying to understand my body at this stage.
    My 16 year old daughter requested her active b12 to be tested and was refused after a lecture on unnecessary tests.my dr wasn’t interested in hearing me telling her I want to know why we’re deficient and is it a coincidence many family members are deficient.she tells me it’s our diet as we don’t have pernicious anaemia so we don’t have an absorption problem.i mentioned my daughter eats meat regularly and so did I and had symptoms than.my nan and auntie also ate meat and developed pernicious anaemia.17 years of not the best quality of life and blaming all my symptoms on my hypothyroid, 3 children with learning disabilities.my daughter had many tests since one and a half years old.never got a diagnosis until age 14 of ADHD and at age 16 b12 deficiency.she always had a sensitive stomache and chest infections with bronichal asthma regularly. one would think all the tests shes had over years were very unnecessary and only needed one important b12 tests .my dr tells me it’s no big deal its not a rare thing your b 12 is fine,even though I don’t feel fine after 3 months .I really don’t want to just go on for another 17 years just feeling low ,thinking nothing can be done.lets hope the red b12 oil works for me .still waiting on Mthfr results.will keep searching til I find a dr that gives a little more support..

    • Hi Colleen,
      Sorry to hear about your interactions with the Dr and the lack of a satisfactory treatment. You mentioned before that you were going to get your genetics done, did you end up doing this, and if so what were the results. You have also mentioned that close family members have had similar problems with deficiency in VB12. Do you know why, is it antibodies to IF, cbl mutations of other? I did have a couple of suggestions. You mentioned that you had hypothyroid problems. This (in fact in around 40%) can cause vitamin B12 deficiency. It is a curious link, but if you are low in T4/T3, then you can’t convert your dietary riboflavin to FMD and FAD. FAD is an essential co-factor for MTHFR, so low levels of FAD leads to effectively MTHFR-like problems. More importantly FAD is used in the cross-over energy step in the CAC (Krebb’s cycle) to electron transport chain. Hence this is a big reason why the hypothyroidism can affect both your VB12 levels and your energy levels. Now the other thing you could ask to get tested is your vitamin D levels. These are essential for energy production in the mitochondria and for stopping osteoporosis. If you have low vitamin D levels, hypothyroidism and low methylVB12 you almost certainly will lack energy. Curiously I have found that many people with CFS have mutations in their vitamin D receptor gene. It looks like optimal levels of vitamin D should be above 100 ng/ml, rather than the 50 that is normally quoted. We are still trying to link up all the biochemistry with this. I will try to update the vitaminb12deficiency.net.au site to reflect this in the next week.

  12. I had burning sensation in my tongue for more than a year. I was evaluated by ENT specialists in Ethiopia and they were giving me various anti fungal agents which didn”t help at all. I had generalized weakness fatigue and depression which I thought was due to overwork. Finally, I collapsed and I was found to have severe Anemia, low WBC count and low Platellate count. I developed severe reaction when they were tranfusing me with platellate.The surprising part is I didn’t have much of neurological symptoms. In retrospect I remember that I some times used to bite my tongue by mistake. I was then evacuated to Bangkok where I was diagnosed to have severe B 12 deficiency and was given high dose of vitamin B 12 daily in the first week which was gradually spaced to a monthly shot. My imptovement was dramatic. The burning sensation subsided immediately within 24 hours. my wbc count and platellates were corrected in 2 weeks time . Hemoglobin took a bit longer but I was told that I had associated Iron deficiency Anemia. My energy came back to normal and I am now taking a monthly shot.

    Vit B 12 level can not be determined here in ethiopia. But one impresive flab finding I had was high levels of LDH. Which became normal after treatment.

    At the moment cynocobalamin is not available in Ethiopia for the last one year and I am taking a combination of vit B1, B6 and B12 ( Neurobion) shot on my own and doing fine clinically. I thought my story helps and I am sharing to others.

    And how do you think I can get Vit B 12 injectable?

    Thank you so much!!

  13. I can anyone advise me? In Feb 2013 my B12 was 100. I was given 5 b12 injections, (not sure what kind) and my levels went up to 770, May 2013, but my folic acid was then deficient, 2.5 range 2.7 to 20. I have been taken 5mg of folic acid for the last 3 months. Now my Folic acid level is 12.6 and my B12 is 400.

    My question; is it normal for b12 to drop from 770 to 400 in 4 months. I have been eating meat and eggs daily.
    Could the folic acid have caused the B12 to go down?
    I would like my levels to be higher than 400, so should I start taking over the counter supplements as my doctor will no way give me more injections when my levels are at 400, range 189- 1162.

    Any advice would be appreciated

    • Hi Cynthia, this all sounds pretty normal for VB12 treatment. Firstly they over-dose you incredibly, they when the serum levels are high the doctors walk away thinking that they have done their job. At this stage the serum VB12 start to drop because you haven’t actully “refilled” the liver and so even though you are eating the egss and meat these will certainly help you not get too low, they will not really raise your levels dramatically on their own. Initially, if you have been VB12 deficient you will find that once you start the VB12 that your folate will drop (as you found), then you “expose” you folate deficiency.
      I believe that you are right in keeping your levels above 400, but I bet you won’t find a doctor that will say so. If you do, many people who read these posts would certainly like to know who the Dr is.
      I would try taking the OTC VB12 supplements as an additional supplement and make sure you monitor your VB12 levels. If they still keep dropping you might have to try to work out why, or take the transdermal VB12.

      • Hi Greg, thanks for the reply and you are dead right, as far as my doc is concerned 400 is within a healthy range, so job done! Luckily I don’t have any of the bad symptoms of b12 deficiency, other than fatigue which isn’t as bad as it was when I was deficient.
        I am going to take the OTC supplements and get my levels measured in 6 months to make sure that they are rising. My only concern was that if I take the OTC supplements it might hide an underlying issue, (if there is on) or give a false reading? Does that make sense?

        • Hi Cynthia,
          Yes you make total sense and it is certainly worth being aware, although perhaps not worrying.
          Others may want to comment further on this, and I know that there are many who have been contributing to this site for years. (See Jinny April 11, 2013 at 7:56 am, amongst others) One of the real issues that may be of concern is why you became deficient in the first place, as this may determine whether oral supplementation will work of not. Another issue is how long you were deficient, as this will determine if you have underlying undiagnosed damage. You say that you don’t have any of the other symptoms of deficiency so that is a plus.
          If you have an absorption problem, then supplements will be less effective and your levels will drop off over time. You will discover this at the 6 months assessment (a long way off). In the meantime, I would be monitoring for sub-clinical signs of deficiency, and if you are worried get your thyroid function tested, as hypothyroidism is very common and can give some symptoms similar to B12 deficiency (such as the tiredness), it can also cause VB12 deficiency.
          Otherwise, you could check out the sites that deal with the causes of vitamin B12 deficiency and see if you fall within any of the categories. You are doing very well in “being aware” which is the main thing. Good luck.

  14. My 15 year old daughter as tested very low on B12 and Iron so she has been put on Iron pills but nothing for the B12 at all. This past year she has been diagnosed with bad depression and is now seeing a counsellor and is on antidepressants. She has been diagnosed with ME and has violent head aches and can’t concentrate or remember what she studies. she has been a straight A student up and till now and I am worried cause she has only gone to school once this week and it is an important year. she has terrible pain in her spine but it has all being put down to ME and depression. Could this all be down to her B12 being very low and if so what do I do? please help

    • It sounds like there is a lot more going on there. There are many genetic mutations that can cause problems with the methylation pathway cycles. Some triggers can be stress, infections, etc. Whatever the case all these changes trickle down the pathways. Its quite complex but here is a diagram http://www.autismpedia.org/wiki/index.php?title=Image:Methylation-cycle.jpg . One of the major problems is MTHFR genetic mutation which doesn’t allow your body to process folic acid and you must take an activated form like (6S)-5-methyltetrahydrofolic acid, calcium salt or L-methylfolate. Nearly 50% of the population have this mutation. While taking this, you must also try to stay away from folic acid form like in fortified cereals and multi vitamins. dr’s can perform MTHFR test. A larger view of your genes can be ordered from 23andme. Then from there you can find all the problems to address.
      With the depression it sounds like there may be problems in the serotonin levels. While antidepressants contain the serotonin and such, there may be other supplements to help boost serotonin naturally. Possibly tests more geared to checking serotonin, dopamine, epinephrine, and norepinephrine levels would be helpful. Another test would be to check homocysteine level.
      this article was good too on B12 deficiency anemia – http://www.webmd.com/a-to-z-guides/vitamin-b12-deficiency-anemia-topic-overview. Activated forms of B12 would be a good idea like some of those referenced above. They can be found in health food stores. Hope this helps some

    • I am very surprised that if your daughters B12 levels were low that the doctor didn’t treat it. Looks like he might have known about anemia and low iron, but not that low VB12 can cause the same thing. Subclinical vitamin B12 and its consequences is incredibly poorly understood. Depression is a common symptom of VB12 deficiency and it is surprising given that she tested low that she wasn’t advised to take it. I would certainly stay away from the anti-depressants until you try VB12. You could go to another doctor, armed with all the information on vitamin B12 deficiency and ask for VB12 shots. Alternatively you could try high dose VB12 preparations such as the RedB12 from transdermoil.com Many people who have been deficient have found that this work, myself being one.

    • How is your daughter? I am asking because my 16 yr old daughter has been suffering similarly and I am beginning to question many of her struggles as B-12 deficiency, but she is in the low end of ‘normal’ so I am wondering if I can get a doctor to treat her.

  15. Drew: do you ever experience jaundice coloration? Are you taking any supplements for weight gain or muscle enhancements like in the health food stores–that could raise your creatinine or also high meat diets as well as dehydration? What about diet-do you eat high meat diets or have adequate fruits and veggies? Another question-do you consume enough water in a day?

  16. I have been experiencing weight loss, fatigure, numbness and sharp pain on the bottom of my feet at few times daily, low appetite. The levels below have already been ran by my doctor but he feels as if I am fine. I am wondering if anyone knows how to interpret these levels and could possibly help me out. I have lost 20+ pounds in the past month to two months and am in the Air Force. These military doctors don’t seem to know a whole lot and I don’t have the choice to be seen off base because my insurance won’t cover it. I was healthy and active at around 165 pounds a year ago and am currently struggling to stay above 130 pounds.

    Thyrotropin Sensitive Chemistry/Hematology Test Name Result Units Reference Range
    Thyrotropin, Serum or Plasma Quantitative Detection limit <= 0.05 mIU/L 1.75 mcIU/mL (0.34-4.82)

    Comprehensive Metabolic Panel Chemistry/Hematology 17 Sep 2013 @ 1831
    Test Name Result Units (Reference Range)
    Albumin, Serum or Plasma Quantitative 4.9 g/dL (3.4-5.0)
    Bilirubin, Serum or Plasma Quantitative 1.5 Higher Than Normal mg/dL (1.0)
    Calcium, Serum or Plasma Quantitative 9.8 mg/dL (8.4-10.2)
    Carbon Dioxide, Serum or Plasma Quantitative 25.7 mmol/L (21-32)
    Creatinine, Serum or Plasma Quantitative 1.5 Higher Than Normal mg/dL (0.6-1.3)
    Glucose, Serum or Plasma Quantitative 84 mg/dL (70-110)
    Alkaline Phosphatase, Serum or Plasma Quantitative 96 U/L (50-136)
    Potassium, Serum or Plasma Quantitative 4.8 mmol/L (3.6-5.0)
    Protein, Serum or Plasma Quantitative 7.9 g/dL (6.4-8.2)
    Sodium, Serum or Plasma Quantitative 142 mmol/L (137-145)
    Alanine Aminotransferase, Serum or Plasma Quantitative 30 U/L (30-65)
    Aspartate Aminotransferase, Serum or Plasma Quantitative 10 Lower Than Normal U/L (15-37)
    Urea Nitrogen, Serum or Plasma Quantitative 15 mg/dL (7-18)
    Chloride, Serum or Plasma Quantitative 103 mmol/L (98-108)

    CBC Profile Chemistry/Hematology 17 Sep 2013 @ 1831
    Test Name Result Units (Reference Range)
    Leukocytes, Blood Quantitative Automated Count 9.88 x10(3)/mcL (4.0-10.2)
    Erythrocytes, Blood Quantitative Automated Count 4.57 Lower Than Normal x10(6)/mcL (4.69-6.13)
    Hemoglobin, Blood Quantitative 15.3 g/dL (13.5-17.5)
    Hematocrit, Blood Quantitative Automated Count 42.3 % (41-53)
    Mean Corpuscular Volume, RBC Quantitative Automated Count 92.6 fL (80-100)
    Erythrocyte Mean Corpuscular Hemoglobin, RBC Quantitative Automated Count 33.5 pg (26-34)
    Erythrocyte Mean Corpuscular Hemoglobin Concentration, RBC Quantitative Automated Count 36.2 Higher Than Normal g/dL (31-36)
    Platelets, Blood Quantitative Automated Count 265 x10(3)/mcL (150-400)
    Erythrocyte Distribution Width CV, RBC Quantitative Automated Count 12.5 % (11.5-14.5)
    Platelet Mean Volume, Blood Quantitative Automated 9.7 fL (8.3-12.0)
    Neutrophils/100 Leukocytes, Blood Quantitative Automated Count 72.7 % (37.0-80.0)
    Lymphocytes/100 Leukocytes, Blood Quantitative Automated Count 18.7 % (10.0-50.0)
    Monocytes/100 Leukocytes, Blood Quantitative Automated Count 7.6 % (0.0-12.0)
    Eosinophils/100 Leukocytes, Blood Quantitative Automated Count 0.6 % (0.0-7.0)
    Basophils/100 Leukocytes, Blood Quantitative Automated Count 0.4 % (0.0-2.5)

    Microscopic Urine Chemistry/Hematology 17 Sep 2013 @ 1830
    Test Name Result Units Reference Range
    Leukocytes, Urine Sediment Quantitative Light Microscopy HPF NONE OBSERVED /HPF (NONEOBS)
    Erythrocytes, Urine Sediment Quantitative Light Microscopy HPF NONE OBSERVED /HPF (0-2)
    Bacteria, Urine Sediment Quantitative Light Microscopy HPF TRACE /HPF (NEG)
    Mucus, Urine Sediment Semi-Quantitative Light Microscopy 1+ Higher Than Normal (NEG)
    Epithelial Cells.Squamous, Urine Sediment Quantitative Light Microscopy HPF 0-1 /HPF (RARE)

    Urinalysis Chemistry/Hematology 17 Sep 2013 @ 1830
    Test Name Result Units Reference Range
    Color, Urine Qualitative YELLOW (YELLOW)
    Appearance, Urine Qualitative CLEAR (CLEAR)
    Specific Gravity, Urine Quantitative Test Strip 1.025 (1.005-1.025)
    Protein, Urine Semi-Quantitative Test Strip 2+ (NEGATIVE)
    Glucose, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
    Ketones, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
    Bilirubin, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
    Blood, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
    Nitrite, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
    Leukocyte Esterase, Urine Semi-Quantitative Test Strip NEGATIVE (NEGATIVE)
    pH, Urine Semi-Quantitative Test Strip 6.0 (5.0-7.5)
    Urobilinogen, Urine Quantitative Test Strip 0.2 EU/dL (0.2-1.0)

    • Drew: do you ever experience jaundice coloration? Are you taking any supplements for weight gain or muscle enhancements like in the health food stores–that could raise your creatinine or also high meat diets as well as dehydration? What about diet-do you eat high meat diets or have adequate fruits and veggies? Another question-do you consume enough water in a day?

    • Hi Drew,
      Looks like a fairly comprehensive blood test, where the the only real anomaly appears to RBC count. Weight loss can occur in people with vitamin B12 deficiency, which I notice that they haven’t tested. You mention that you are in the armed forces. Any chance that you have been OS and got a gut infection. Giardia is a very common contaminant of foreign water and there is evidence that it can cause vitamin B12 deficiency. Other gastro-intestinal bacteria can possibly do the same the most notable of which would be H. pylori, which is also known to cause VB12 deficiency.
      I would suggest that you get this checked out.
      FYI here is a reference on the Giardia
      Aust N Z J Med. 1986 Feb;16(1):78-9.
      Giardia infection causes vitamin B12 deficiency.
      Cordingley FT, Crawford GP.
      Abstract
      A patient presented with hematological evidence of vitamin B12 deficiency. The Schilling test performed suggested intestinal malabsorption and further investigation revealed heavy infestation with Giardia lamblia. Specific treatment of the giardiasis with tinidazole resulted in correction of the abnormalities in vitamin B12 absorption. These findings, together with the absence of other causes of vitamin B12 deficiency, suggest that giardiasis should be considered as a cause of vitamin B12 deficiency
      Let the group know how you go. There are a lot of people with a lot of experience in this group.

  17. It is not written up anywhere. This is actually on my 4 year old daughter. I am just starting with the genetics up and seeing the whole picture. Both her and I started having crazy symptoms about a year and half ago and God just keeps leading further in. I just kept asking the questions and researching. It was surprising on the cobalt. It wasn’t the vitamin at first, but then realized all the foods containing cobalt were causing more and more of a problem-fortified grains, milk (cattle are given in feed or spread in fertilizers in pastures and fields). Other things with other forms of cobalt are sidewalks, metals are often combined with it like chrome or nickel, so then you have to think about doorknobs, faucets, metal fasteners, even silverware and pots and pans. Crazy! But it helped. Hers could be seen on the skin, and i thought if it burned her skin, imagine how the body is reacting to it inside. So then you ask, why does she react all of a sudden to it? why are there other strange allergies showing up? is there a bigger picture we’re not seeing? We can’t just treat the symptom, it’ll never solve the problem. And what was the original trigger? But the strange thing is that we’re not the only ones. Since that time others across the US started having strange problems too that no one can figure out the cause or problem. Makes you wonder what the common link is or was. The only thing I can think of common may have been vaccines or shots, unless something in the air or water supply b/c I have seen some reactions in animals too.
    So this is going longer than i’m sure anyone wants to know. She is now able to withstand about 1/4 dropper Methyl cobalamin, and with no skin reaction from a patch test. For all the other things going on it was the best form over hydroxl form. We’re still working on it as well as other vitamins. Due to other allergens we can’t take just any multivitamin.
    I suggest for anyone not getting anywhere with B12 to look further. Without addressing other cycles, you may keep taking more and more b12 to no avail. The cycles I refer to are Methylation cycle, folate cycle, BH4 cycle, urea cycle, homocysteine, etc. There are so many conditions or symptoms wrapped up in here-heart trouble, anger, sugar issues, cancers, allergies, depression, blood clots, etc.

  18. Yeah, it was a patch test and it burned the skin to a scab in 2 days. That lasted nearly 2-3 months. It was anything cobalt-so more of the unactivated form of B12; which is in anything fortified. So we stayed away from all foods containing it and it got better to an extent. when those foods were reintroduced skin areas would flare up, or blister and such. There are other things to worry about when not having b12 like anemia, as well as hindering other cycles. So as time progressed we were able to try activated form of B12. It is handled fairly well, but it seems is better if mixed with vitamin C supplements. Both separately seemed to not work as good as with them mixed together. But you also have to be careful as vit c at a certain strength will counter the B12. There are also other supplements involved. But its almost like everyone is a case by case study as the genetics may not work the same in all.

    • Thanks CM for the information. So as far as you are aware were you allergic to all of CNCbl, OHCbl, AdoCbl and/or MeCbl. Supplements are generally CN-Cbl, which was an historical mistake. Some people can’t handle the CN that is produced. This is the inactive form of the vitamin. When you say activated forms, do you mean Ado and MeCbl? As you know the cobalt is in all forms, but it is hardest to “get at” in the AdoCbl. The OHCbl is actually quite reactive with many, many things, such as GSH, thiols, NO, NO2, sulphite, sulphate, so it could “look” as if it was reactive, but if it grabbed something else it may have been that. Very hard to tell without running a proper panel of material against it. Most people with an allergy to cobalt are allergic to “free” cobalt, not porphyrin bound cobalt. The cobalt chelated into VB12 is almost impossible to remove from the corrin ring in humans, which makes it very different to say the iron in heme, which is released. I know that there was a paper on toxicity of cobalt to cells with some reference to the appearance of cobalt in urine. At best the science was questionable. Some of the papers on allergy to VB12 have questioned that it is actually the VB12 that people are allergic to and suggested that it is actually a contaminant in purification. At one stage nearly all of the VB12 used in the world came from one supplier in Europe, and I know that that material does have some other non-VB12 material in it. We used to use it and had to extract out the contaminants before we could do any chemistry on it. Not very helpful for the average user though. Thanks for sharing your experience. I don’t suppose it has been written up in any journal that we could quote?
      It is good to hear that you have at least found a preparation that you can take now.

  19. Ok folks – my level was 84 third week of July. Was on weekly shots and now did a blood draw. its now at 1800! does that even make sense? I still feel a bit of tingling / spasms in my groin and calf area on and off. Bit confused now really….

    • Hi GD, Many reasons why it may be high. All that reading does is basically say that the injections got into the body. You don’t know what type of VB12 it is CN-Cbl or otherwise (given that you were injected with CN-Cbl it most probably is this. FYI CN-Cbl is not actually biologically active, it has to be converted to Ado and MeCbl inside the cell for it to be at all useful), and you don’t know what sort of protein it is bound to. It has to be bound to TCII or it is useless. Then it has to be transported into the CSF, which is a slow drip-like process. Generally when levels are very high it is bound to haptocorrin (HC) and is not available to the cells. You can have high levels of HC if you have any sort of infection or have psoriasis, RA, or other inflammatory conditions.
      Many people who have contributed to the site have had high VB12 levels after treatment. I think most of them agree that basically you have to be driven by the symptomology. It will stop your doctor giving you more shots though, which generally is not a good thing.
      If you scroll through the various comments on the site they will give you an idea.

      • Greg – you were right! He did cut back on the shots from once a week to twice a week for 2 months and then monthly. After three months we will another blood draw to determine course of action. I had told him that i am still experiencing symptoms of muscle spasms at different areas, tingling/numbing in different areas to which he replied that it is normal and could take some time for all that to go away. He has also advised me against doing an MRI. I cant really sleep at night with all these symptoms….is it the general consensus that the symptoms would stay for a while although VB12 levels are high? Its not like a hungry stomach that doesnt feel hungry anymore after some food ie., not an instantaneous relief of symptoms once the VB12 levels are within reason.

        worried sick.

        • Hi GD, I would have thought (and that is just judging from various conversations I have read, and I am not a GP), that if you were getting the shots and your levels are high you should be starting to feel much better. Now there are several caveats on this. Firstly, you were given CNCbl if you are not converting it efficienty to Ado and MeCbl you won’t get the desired effect. In this case you would need to take the Ado/MeCbl mix. Secondly, I don’t know if you smoke, but if you do the CN-Cbl also won’t work well (sorry, but I don’t know, so please don’t be offended). Here again you would need to take either OH Cbl, or the Ado/MeCbl mix. Thirdly, sometimes if you are deficient in magnesium you may still have some symptoms, but you would probably need to have this tested. If you are low, then taking the Magnesium may help.
          Some of this may be indicative of why you became deficient in the first place.
          I am sure that there are others who may have other suggestions.

  20. I think the b 12 is just the tip of the ice burg. While addressing the b 12 is essential, it won’t help if other parts of the methylation cycle and other cycles off there aren’t helped as well. At least 50% of the population has defect in the MTHFR gene allowing decreased ability to process folic acid. They in turn need to take activated form. The genetic mutations trickle down from there. Not a lot of doctors look at this big picture. There seems to be triggers that throw this whole system off where supplements are needed then for life.
    As with my daughter it has come to an allergic reaction to b 12 and having to completely remove it from her diet until help with methylation cycle was addressed. Only until then was she able to handle an activated form of B12. So I saw with her a back up of B12 to allergic point (or where body couldn’t deal with excess). It seems until looking into the whole genetic makeup that you won’t be able to find all the problems to address.

    • Hi C, you may be right. Could you please describe your symptoms of “allergic reaction to b12”. I know of a couple of people who have reported a reaction to methylVB12, but it was not a classical type 1 to IV hypersensitivity. Thus, there was no wheal and flare on the skin, the reaction type was very delayed, not in 15-30 minutes, and there was no generation of heat. If you lightly scratch the skin and drip some of the VB12 solution onto it do you get a classic wheal and flare reaction?
      As for the “trickle” process, you are right, there was a very good paper dealing with how a reduction in substrate in any of the cycle generally reduced the rate in the whole cycle. Given that there is considerable feed-back in many enzymatic reactions as well as the effect of Le Chatelier’s principle one would expect this. There is also the the added affect of improper absorption of many of the B group vitamins in conditions of folate and VB12 insufficiency. So yes you have to look at the whole picture.