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

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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.

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1,962 Comments

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  1. This is kind of the opposite situation, but have not been able to find info on your webite for it. My B12 readings on my last blood workup was extremely high. I’ve been told that having B12 Elevated is just as bad as having a dificiency. What could be causing my B12 to be High, other than when I was taking B12 supplements, but I had stopped for almost 2 months before my last blood workup.

    Is there anything I can do to bring down the HIGH B12 in my blood? If so, can you share what that might be?

    thank you

    • Gabi,

      Vitamin B12 is stored in the body for some time – I’ve read as much as several years. However, because it is water-soluble and readily excreted, supplementation will not cause high B12 levels in the blood.

      According to the Mayo Medical Laboratories website, many conditions other than Vitamin B12 supplementation are known to cause an increase or decrease in the serum vitamin B12 concentration including:

      Increased Serum B12
      Decreased Serum B12
      Ingestion of vitamin C
      Pregnancy
      Ingestion of estrogens
      Aspirin
      Ingestion of vitamin A
      Anticonvulsants
      Hepatocellular injury
      Colchicine
      Myeloproliferative disorder
      Ethanol ingestion

      Also, see http://www.medicaldaily.com/high-levels-vitamin-b12-may-be-linked-increased-cancer-risk-263123.

      • I clicked enter too soon – this is the correct version:

        According to the Mayo Medical Laboratories website, many conditions other than Vitamin B12 supplementation are known to cause an increase in the serum vitamin B12 concentration including:

        Ingestion of vitamin C
        Pregnancy
        Ingestion of estrogens
        Aspirin
        Ingestion of vitamin A
        Anticonvulsants
        Hepatocellular injury
        Colchicine
        Myeloproliferative disorder
        Ethanol ingestion

    • Hi Gabi,
      I just stumbled on this website and your post caught my eye. I put the same response in to another person, but will attach it here as well for you. I, too, had high serum levels of B12 without supplements. I am not a vegetarian. I had also been on PPIs for many years. They were looking at B12 because I had a long history of fatigue and ‘brain fog’. My levels came back more than 25% above the upper limit. Dr said ‘we only worry if it is low’. It really bothered me, and awhile later I saw a nutritionist who recommended intracellular micronutrient testing. B12 levels were deficient intracellularly. I was found to be homozygous for the MTHFR a1298c polymorphism, which presumably affected my ability to get B12 out of my bloodstream and into my cells. I Have been supplementing daily with 1000 mcg of sublingual methylcobalamin and have seen noticeable improvement. So, even ‘high’ levels of B12 in your blood may be misleading. I have lots of things wrong with me – all stemming from a 20 history of RA and consequent treatment with steroids and other meds, but have found many approaches that have helped improve well-being and this was definitely one of them.

      • I too have high B12 with doctors that don’t think it’s a big deal. What type of nutritionist or practitioner did you see for the discovery of MTHFR? I have suspected this, but not sure who can help me figure this out. I have joint and muscle problems for the last 3 years, with no doctors able to figure it out.

        • Hi Babs, sorry for delay in responding. I went to a nutritionist who works in the Integrated Medicine Dept at a local hospital. I kept probing around why my B12 would be high. After a while she suggested a test of cellular micronutrients. (As opposed to serum/blood levels.) Their office used Spectracell Labs. It cost $190; insurance did not cover. I think it was the best money I ever spent. Results included MTHFR status as well as a number of micronutrients. The cellular B12 was “deficient” which was in contrast to serum levels, which were above normal. A couple of other micronutrients were also “deficient” and about a dozen were “borderline”. I have used the results to do targeted replacement. I feel the best I have in years. I have not yet had the test repeated, but plan to do so in the fall.

            • Stephen, I have not checked back on this site for quite awhile so just getting your question now. Hope it’s not too late to respond.

              The micronutrient testing is a blood test but they apparently use the white blood cells to look at micronutrients. The lab was Spectracell.

  2. I have been having issues with my stomach for years being told it is gastritis, then diverticulitis, then colitis had an expensive test done that said it was inclusive but indicated some form of inflammatory bowel disease however all the blood work and stool test and biopsies that were done during an endoscopy and colonoscopy all came back with nothing but i am in constant pain in my abdomen my stomach swells to where i look pregnant at times I can be 10 to 15 pounds heavier in the evenings then i was in the morning and another dr just happen to run test and said my b-12 was low 212 and vitamin d was low and testosterone was 101 for a 47 yr old man. Could the b-12 be causing my stomach issues the gastro dr is wanting to send me to another dr for a second opinion or more testing.

    • Michael, you didn’t mention whether you have been taking any meds for your stomach problems. If you have been taking PPIs or H2 blockers, they deplete B12 because they suppress the stomach acid that is part of the system used by your body to extract B12 from your food. If you are a vegetarian or vegan, unless you have been supplementing then you can have low B12.

      You need to find out the cause of your B12 deficiency. You should get tested for pernicious anemia, which results in little/no stomach acid. PA can run in families so let your doctor know if other members of your family have had it.

      The symptoms of insufficient stomach acid are similar to too much acid. Most people who are older don’t have enough (decreases with age). The drug companies have been misleading the public about this for years. With the availability of PPIs and H2 blockers over the counter, it’s too easy for people to find themselves in serious trouble after taking them long term. These drugs should only be taken for a few weeks.

      Traditional Western doctors are using a minimum B12 that is far too low, typically 200 pg/mL. According to Sally Pacholok in her book “Could It Be B12?” the gray area of 200 -450 pg/mL is where neurological symptoms are known to occur. When in this range, particularly if you are having symptoms, you need to get treatment.

      After you start treatment or supplementing, your serum B12 will greatly increase and any future B12 tests will be skewed. You must stop the B12 for 6 – 8 weeks before testing.

    • Michael ..
      People can have gastrointestinal symptoms with low B12 and low Vitamin D. Yes, it can affect your tummy. Low B12 can reduce the production of thyroid hormones. Your Thyroid also affects your whole body when low. When mine was low I had bad acid with acid reflux. I kept Tums in business. Now that all my levels are in the normal range those symptoms are gone. As we get older many people become milk intolerance and that can make your tummy hurt, swell, diarrhea and gas. So many things can cause your symptoms .. gallbladder conditions, food allergies, Vitamin deficiency, certain medications. When you get your levels back in order if the deficiency is the cause things will improve. During the mean time, I would see the other doctor for a second opinion and have more testing done. Have you been checked for a gallbladder condition or gallstones? That could be another reason your doctor wants you to be seen by another doctor. I’d rather be safe than sorry when it comes to my health. Rule out as much as you can. You didn’t state if your doctor was giving you B12 shots or … Make sure to take a B12 Sublingual not the tablet, if your taking B12 by mouth. Keep us posted how you’re doing.

  3. I just turned 60 and I am a very active woman. A couple of months ago I got a UTI and from that point on my health has gone down hill. Shortly after taking ciproflaxin for the UTI I started getting back pain that would start in lower back and then move to shoulder blades, neck. Then a few weeks ago, I starting getting pins and needles in fingers, legs and toes. I had heart palpitations and shortness of breath. Went back to doctor and wanted me to see a neurologist. I finally talked him into giving me blood tests and it came back that I wasVitamin B 12 deficient. He told me I would have to give myself injections everyday for a week, then once a week for a month and then once a month after that. He still wants me to see a neurologist because he is insistent that I have a nerve problem. I have just made an appt. with a neurologist but I am just wondering if it could be the Vitamin B 12 deficiency. The pain and the pins and needles has subsided somewhat but I still have pain. Has anybody else have the same symptoms.

    • Jean,

      Yes, B12 deficiency can cause nerve pain, particularly when is in an advanced stage. Last fall I had shooting pains up my legs. Felt like sciatica but not always constant like typical sciatica.

      Two years before that I had a disc bulge which caused terrible sciatic pain, and odd back pains that would come and go. Recovery took months, should have only been 6 or 8 weeks. I believe I was becoming B12 deficient then, which caused those symptoms.

      My pins and needles feeling has subsided. When my B12 gets low then it comes back again. I still have a lot of pain in my feet, because I had foot pain well over a year and foot surgery (misdiagnosed as a neuroma). It’s been a year since my surgery and I still have nerve problems in my feet.

      I sincerely hope your foot pain subsides. I’ve read in Sally Pacholok’s book “Could It Be B12?” that if you’ve had it 3 months or less there’s a good chance it will go away. I recommend that you buy the book, it’s available on Amazon.

      I suggest you continue treating your B12 deficiency and also keep your neurologist appointment. There are tests your neurologist can do to determine if you’ve had nerve damage.

      Good luck in your recovery!

    • Jean, Cipro has many side effects that sound like what you’re experiencing. It is in the fluoroquinolone class of antibiotics, along with Levaquin, Floxin and Avelox. Google “fluoroquinolone toxicity syndrome” to find out more. There is also a site, floxiehope.com for help with getting better.

    • For seven years I was experiencing off and on, hands and feet tingling, burning, pain, difficulty walking, extreme fatigue and depression. It then started where I had extreme difficulty getting dressed, had trouble feeding myself, could not write or hold a pen. Bending my neck sent electric shocks thru my body. Went to the hospital for MS testing. MRI, spinal tap, brain scan. After more testing, one Dr. checked my B12 level, it was 80. I spent 10 days in the hospital and 10 days in rehab. They were not sure if I would recover. Left untreated, B12 deficiency can cause permanent brain damage. I was lucky, everything reversed. Maybe if B12 methylcobalamin supplements were given early on, we might be able to prevent MS and other brain and nerve related diseases.
      If that one Dr. didn’t check my B12 level,I would have been diagnosed with MS, because the symptoms are the same.
      B12 is vital for our health. It helps make DNA & RNA, your red blood cells.
      Helps with Depression,Dementia,Sleep Disorders.
      Protects &a rebuilds the Myelin sheath covering your nerve fibers.
      Slows brain shrinkage up to 80%.
      Lowers Homocysteine levels associated with heart disease.
      If low levels are left unchecked, brain damage will occur and can become permanent.
      Helps with age related macular degeneration.
      By supplementing with sublingual Methylcobalmin B12 around 40 or 50 years of age, we could help prevent problems before they start.

      • Hi Joyce
        Ten years ago I was like you experiencing health problems and my doctor tested me for MS and had a spinal tap, MRI’s, blood tests, etc. Luckily my doctor tested me for B12 and my level was 41. I was not in the hospital though, he started me on cyanocabalim injections.My level eventually went up but my symptoms didn’t improve a whole lot. Just a few years ago I found on a website about transdermal of B12 (methylcobalamin) oil. I’ve been using the oil and my MMA has improved. But I think since it took the doctors to find out what was wrong with me, I may have permanent nerve damage, especially in my legs and feet. I’ve done so much physical therapy and aquatic therapy but still my gait, numbness, spacticity, and severe stiffness is still there. I think it will take some time for my nerves to regenerate.

      • Hi Joyce,

        So glad everything reversed for you. Do you know the reason you were deficient? Were you tested for pernicious anemia? I’ve got permanent nerve damage as a result of my deficiency which was caused by pernicious anemia.

        Please tell everyone you know about the terrible consequences of being B12 deficient since you experienced them firsthand. Maybe if enough people pester their doctors to have their B12 tested annually, doctors will wake up to the fact that there is something serious going on and that they should automatically order this test for patients who complain of fatigue, brain fog, hair loss, and/or weird pains. As it is now, thousands of dollars are spent unnecessarily on expensive MRI and CT tests as well as doctor visits and drugs. Why the medical community hasn’t yet woken up to this problem just dumbfounds me. (Actually doctors knew more about it in the 1950s when B12 began being manufactured than they do now).

        • Hi Tracy,
          Amen to that! I totally agree with you about getting the word out about B12 deficiency. I also have permanent nerve damage. In the beginning, my doctors put me thru agonizing tests, costly, and after 2 years a simple blood test discovered my B12 level was 41. I still have specificity, severe stiffness and bad gait. I guess it could be worse.

    • Ciprofloxin is a fluorinated antibiotic. Do some research on prescription drugs containing fluoride and you will find tons of information about the dangerous side effects of these types of drugs. I will not take them. They can cause serious reactions and side effects. When asked about allergies, I list all fluorinated drugs.

  4. I was just tested and have what my doctor considers a ‘normal’ level of B12 at 228. I feel it is too low. Is it too low?? It was 167 two years ago (summer 2013) and I had several injections which brought it up to around 1000, so it’s dropped quite a bit since then.

    What can I do because my doctor won’t prescribe injections for me?

    Is there a way to get Methylcobalamin into my system without injecting it? And is it available to buy online somewhere?

    Thank you!

    • Taura, if you are in the US or UK then 228 is in the gray area of 200 – 450 pg/mL where neurological symptoms can appear. You probably won’t find a regular doctor that will treat you as they typically use a very low cutoff of 200 (some even use lower). A naturopathic doctor is likely to be more willing to treat you. Once you start supplementing then any future B12 tests will be skewed unless you stop taking B12 for 6 – 8 weeks beforehand.

      You can buy oral methylcobalamin on Amazon. If you have pernicious anemia your GI system won’t absorb it properly so get sublinguals. It goes under your tongue so it dissolves slowly into the blood vessels there. If you have a health food or health supplement store nearby, you should be able to get some there.

      Look carefully at the label to make sure you are getting methylcobalamin. You’ll also find cyanocobalamin and hydroxocobalamin. I’ve found the Jarrow brand to be of a reliable strength. Read the reviews if you are concerned about additives.

    • Your Doctor is full of crap. Your numbers are really low. My numbers were at 217 with neurological symptoms. My endocrinologist recommend injections for a few months, which I took. Then he changed me over to a B12 Sublingual 1000 mcg daily. A endocrinologist is the person to seek treatment for this deficiency. I use Nature’s Bounty B12 Sublingual 1000mcg and have been on it for three years now. I’ve tried other brands, but Nature’s Bounty I found to provide supplements of unsurpassed quality and value without the added junk or adverse reactions. The starting standard dose is Sublingual 1000 mcg daily, under your tongue. Take SUBLINGUAL ONLY! Takes up to 2 months to get your levels back into a normal range. Did your doctor test your Thyroid, Vitamin D, etc? Hope you feel better soon.

      • tnt3266

        I agree that they are too low. I’ve been experiencing memory issues and low energy lately. I’m only 37 years old so it’s concerning for me.

        I am currently being tested for high blood pressure (It’s sitting around 145/99) and the doc told me my Iron is low but I don’t know the number. I think I’m going to ask for all my numbers when I see him next.

        I have none of the usual risk factors, I’m not overweight, I don’t smoke, I’m very active, diet is ok etc. So they are trying to pin down the cause (BC pills, heredeitary, or stress), then deal with the iron issue.

        I do have a history of gastro issues like inflamed intestines. I think it’s all related somehow.

        For now I’ve found a sublingual B12 by SunForce – it’s methylcobalamine so I’m hoping it provides some results.

        Thanks for the advice 🙂

    • I highly recommend that you purchase the book “Could It Be B12? An Epidemic of Misdiagnosis” by Sally Pacholok and Jeffrey Stuart. They are two medical professionals who recognized this is a huge problem and are making it their mission to educate doctors and the public about B12 deficiency. It’s available on amazon.

      I came across it when searching for answers after my B12D diagnosis last fall. It is stunning how ignorant most doctors are about this very serious problem.

      Also there are online message boards you can join, such as the Facebook Pernicious Anemia/B12 Deficiency support group and the UK-based Pernicious Anemia Society.

    • Taura,

      A fairly new product that is even more effective than sublingual formulations is a transdermal B12 oil available from b12oil.com. They have several B12 products, including methylcobalamin, adenosylcobalamin, and hydroxylcobalamin, as well as other formulations.

      The transdermal application looks like it is comparable to using subcutaneous B12 injections. I have used the adeno/methyl B12 oil for over two years now, and my MMA test shows I’m getting adequate B12.

      • Lynn_M

        Thanks for the tip! I found some sublingual B-12 methylcobalamin and I’ve been using that for a few days. I will definitely look into the trandermal oil though!

        I can buy injectable B12 form the drugstores but I am not comfortable giving myself a shot which is why I’m looking for alternative options.

    • Taura,

      A fairly new product that is even more effective than sublingual formulations is a transdermal B12 oil available from b12oil.com. They have several B12 products, including methylcobalamin, adenosylcobalamin, and hydroxylcobalamin, as well as other formulations.

      The transdermal application looks like it is comparable in effectiveness to using subcutaneous B12 injections. I have used the adeno/methyl B12 oil for over two years now, and my MMA test shows I’m getting adequate B12.

  5. My Autoimmune Vitamin B12 Deficiency was diagnosed 2007, but inadequately treated for over a year, which had a disastrous impact on the quality of my life and I’m still dealing with some of the negative consequences. As a physician, I could easily access medical literature on the subject, and soon became frustrated and demoralized by medical care providers who were not as well informed and were not amenable to my bringing them up to speed. I was significantly incapacitated by my illness and had to work far too hard advocating for myself in order to finally receive adequate treatment. Currently, I am very concerned that standard dosing regimens are insufficient to achieve acceptable outcomes for these patients, and patients are still not adequately informed about the many potential comorbid medical issues that may be ignored, and thus hampering recovery. In my experience, providers are definitely not attending to quality of life indicators in order to measure the effectiveness of disease management. I am interested in connecting with advocacy groups and finding venues for better educating physicians and the public with the goal of addressing the importance of early detection and improving quality of care for this group patients at high risk for suffering permanent disability, as well as contributing significantly to rising costs of medical care and elder care in this country that is still under recognizing and poorly responding to the problem.

    • Jeanne, I am so happy to learn you are a physician willing to take an advocacy role in educating doctors and the public about this very serious public health problem. I am a member of some online groups that you may wish to join and monitor as there is much discussion there about late diagnosis and the woefully inadequate treatment of B12D.

      The two groups I’ve found to be most active are the UK-based Pernicious Anemia Society, and the Pernicious Anemia/B12 Deficiency Support Group on Facebook. There are members from all over the world who post on these groups.

    • Jeanne, have you read the book by Sally Pacholok and Jeffrey Stuart, “Could It Be B12? An Epidemic of Misdiagnosis”? They are health professionals (RN and DO), Sally discovered she had pernicious anemia quite by accident while in nursing school. Perhaps you could join forces with them as they have made it their mission to educate doctors and the public. You may be able to get in touch with them by contacting the publisher of the book, the info is in one of the inside cover pages.

      Early this year a movie was released about Sally’s life (titled “Sally Pacholok”, IMDb shows 4 stars for it), but I don’t think it is in wide distribution. If that movie got the level of attention that Erin Brockovich did, it would make a huge difference in the level of awareness of this devastating problem.

      • Tracy,

        No, I haven’t read the book, but will. I’m afraid I’ve gotten side-tracked by quite a few of those comorbid disorders I mentioned, after my B12D was finally diagnosed and treated. But I continue to feel very much alone with the management of my B12D. I’ve lived with the illness and studied my own course long enough to know that I function best with a serum B12 level in the high normal range. Only one of my care providers has had the experience and knowledge to understand why that is the case, while others have consistently sought to debate the issue with me. It’s quite tiresome. I also have Vitamin D Deficiency, and under-treatment was, again, an issue. I have Celiac Disease, and still have to be ever-vigilant with my oral medications in order to maintain the necessary strict gluten free diet. I’ve accumulated a number of entirely unexpected diagnoses over recent years. I have been fortunate, so far, in that all my medical problems are fairly easily managed. I have not been fortunate, in that signs and symptoms of each medical problem presented and worsened, just to be ignored until an acute event occurred. I trained under Preventive Medicine and Continuing Care models. Acute medical events are best avoided. Current standards encourage them.

        • Jeanne,

          Good to hear you are managing your medical problems, you are fortunate. I am disabled as a result of my very late B12D diagnosis. And I’m covered by the largest HMO in the western US, you’d think they’d know better! Just two years ago I was a very active and athletic 56 year old woman. Now I must use crutches or wheelchair outside the house and feel unwell all of the time. I have not been able to find or get a referral to a doctor within that HMO system who knows anything about B12D or PA. The doctors I’ve seen just want to hand out powerful scary drugs for my pain. Most meds I have been unable to tolerate as the PA has made my body hypersensitive. Why couldn’t they have figured out what was wrong before all this happened? I had a number of visits with several different doctors, I kept telling them something was wrong and my symptoms, but none of them figured it out. The state in which I live has such a low cap on medical malpractice awards it isn’t even worth pursuing a lawsuit, it’s even difficult to find lawyers who will touch it. A multi-million dollar lawsuit might have grabbed the HMO’s attention (and the headlines) and perhaps resulted in process improvements and more doctor awareness.

          I agree, current medical practice is to wait for something catastrophic to happen rather than being proactive and figure out what is starting to go wrong. I think doctors in the 1950s were much more aware of B12D than the doctors today. To top it off, there are drugs often prescribed or available OTC that cause depletion of B12 resulting in increasing numbers of people at risk for serious, permanent neurological damage. Meanwhile, doctors continue to hand out antidepressants like candy.

          Other issues with the current situation is B12 is not normally tested by traditional doctors, and the currently accepted normal cutoff is far too low. I think that a B12 test ought to become a standard part of the CBC test as we cannot rely on an elevated MCV to flag a potential deficiency (folic acid enrichment of flour masks this symptom). And as Sally mentions in her book, a B12 level of 200 – 450 pg/mL is the gray area where neurological damage is known to occur, so the lower cutoff needs to be raised to at least 400 pg/mL, at my HMO it is currently 200 pg/mL. When my B12 was finally tested it was 196, barely below the minimum, and I was in terrible shape neurologically by then. There does seem to be a wide variation in symptoms vs. B12 level among people so improvements in analytic test procedures as well as allowing physicians to treat by symptoms not just the numbers are also sorely needed.

          Hope to see you on the FB or the PAS message boards!

  6. Hello. I have been reading many posts here very recently and am amazed. It has been a revelation. I will keep my post as short and sweet as possible. I am 57 years old and have been in pretty good health all my life until recently. About a year and a half ago I started to notice pain in my feet after not being on them very long at all. Also noticed range of motion in my hands was decreasing and some loss of sensation in fingers which at the time I attributed to age related arthritis and long standing carpal tunnel. Approx. ten months ago severe neurological deficit started to manifest itself very insidiously. I now have severe paresthesia / hyperthesia in both hands with very restricted range of motion. Intermittent tingling involving various parts of my body especially my lower legs and feet. Periodic electrical zips/zaps. Itchiness.Cervical and lumbosacral spine pain. Myasthenia / myalgia / radiculopathy. Pain…. Pain… Pain… I am anemic and all my doctors never even mentioned the possibility of B12/Folate deficiency. Here are some of my labs:
    RBC – 4.13 M/uL
    MCV – 106 fL
    MCH – 34.1 pg
    B12 – 279 pg/ml
    Folate – 24.13 ng/ml

    I have been a long term user of both PPI’s and H-2 blockers. My paternal grand mother had P.A. which I informed my doctor of after being advised that I was anemic and not knowing at the time what P.A. even was. Still no mention of possible B12 connection. Well that’s my story so far. I dare not speculate on the next 1 1/2 yrs.
    I think I am in pretty bad shape. Any seasoned veterans out there? I don’t quite know what to do. The best way to describe what is happening to me is it feels like all my sensory nerves are short circuiting. Any advice/info regarding all this would be very much appreciated. Many, many thanks.

    • @paul – A B12 test result of 279 is very low. You have a B12 deficiency. If you want to work with your doctor, you should read Sally Pachalok’s book. Your best bet is to get shots (make sure you get methylcobalamin), because you’ll get more B12 into your system in less time.

      If you want to go it alone, you should search Google for the “active B12 protocol”. Take sub-lingual tablets of methylcobalamin and try to keep them under your tongue as long as possible. Longer time in the mouth leads to better absorption. Anything you swallow is absorbed at a very low rate (which is why you have a deficiency). Some people report good results with transdermal B12, but the sub-linguals are cheaper.

      You should get off the PPIs and H2 blockers, because they interfere with absorption of B12. This may not be easy. Many of those drugs leave you with terrible rebound reflux when you stop taking them. Good luck. There are dietary changes you can make to improve your situation. I don’t know details, but Google should help.

      The good news is that many of your symptoms should improve with B12 shots or supplements. It may take some time before all the damage is reversed, but the prognosis is good… if you can convince your doctor to keep you on the shots long enough.

    • Paul, your story sounds sort of similar to mine with the foot neuropathy. So glad you found this when you did. Please DO NOT handle treating your B12 deficiency all on your own, you need to be under the care of your doctor and have it in your medical records. As you get treatment you’ll need tests to follow along how things are going, and you’ll need your doctor’s help for that.

      Have you been tested for pernicious anemia yet? The tests aren’t always reliable but if the Intrinsic Factor Antibodies (IFAB) test is positive then you definitely have PA. The IFAB test can give a false negative, so the parietal cell antibody test is run. Your doctor should order both tests. Since PA runs in your family, it’s very important to get tested for PA as soon as possible BEFORE taking any B12. I have read that supplementing B12 can affect the antibodies tests and you want those results to be as accurate as possible. It is also a good idea to get MMA (methylmalonic acid) and Hcy (homocysteine) tests and these must be tested before B12 supplementation as they will drop back to normal levels very quickly after getting some B12. Elevated MMA is a marker for low B12 so it can back up your B12 deficiency. Elevated Hcy has several causes including low B12, and it is a cardiac and stroke risk (some researchers believe Hcy is more important than cholesterol levels for determining these risks). My doctor ran these tests on me two weeks after I started getting B12 shots and by then they were in normal range, so unfortunately I don’t know how bad my levels were but I bet my Hcy was sky high as I was in really bad shape. If your ferritin hasn’t been tested, you’ll need that checked too as you may need to supplement when you start getting B12.

      Your folate is high, mine was too. That really confused my doctor (many who are deficient in B12 are also deficient in folate), but I think that when B12 is very deficient then folate elevates. Both are needed together and there is an excess of folate when there isn’t enough B12, so it builds up. For the B12 test, the US and UK typically use 200 pg/mL as the low cutoff for deficiency, but it is known that symptoms can appear within the low normal range of 200-450 pg/mL. But your MCV is very high, usually the normal range is something like 80-100 (MCV= mean corpuscular volume, the average size of red blood cells). Yours are very large, meaning your blood cells are what doctors call macrocytic. That is a definite sign of B12 deficiency. Even though your B12 is not below what doctors use as the normal range, your high MCV means you are deficient and you need treatment ASAP. The serum B12 test is a measure of active plus inactive B12 and some people may have a smaller proportion of active B12 even though the total is within normal range.

      Mike S. is right, you need to get off of the PPIs and H-2 blockers but from what I have read it won’t be easy, work with your doctor on this. Search the internet and you’ll find stories from other people who have done this. I sincerely hope that you don’t have PA so that getting off of these drugs will restore your stomach. PA requires lifelong treatment and there are many other problems associated with it (higher stomach cancer risk, stomach and malabsorption problems, continuing fatigue, etc.). Sadly, doctors have been duped by Big Pharma into believing that stomach acid is a problem. The real problem is low stomach acid, which has similar symptoms. As people age, they typically produce less stomach acid, not more.

      Not many doctors seem to be aware of this so you may need to find one in your area that is more knowledgeable. Severe B12 deficiency may require longer and more aggressive treatment than the standard formula most doctors go by (in the US it is 1000 mcg B12 shots of cyanocobalamin, every other day for a week, then once a week for a month, and once a month after that). In Sally’s book she recommends methylcobalamin every other day until there is no more improvement (rather than just a week). I personally have found that once a month isn’t enough and I need to supplement on my own in between.

      There is a Facebook group for PA. You may benefit by joining the group as the members are very knowledgeable and supportive and it sounds like you need this right now. And you should get Sally Pacholok’s book “Could It Be B12? An Epidemic of Misdiagnosis”, it’s available on amazon, not very expensive (the price of most paperbacks).

  7. Hi, my name is Sandra and I am 28 years old. I have been living in Berlin for almost a year and started having what I thought were sciatica symptoms for about a month now. I went to 2 hospitals and they said I was fine after they ran blood test. Until, I decided to go to an orthopedic. I told him my I haven’t really been the healthiest and was definitely drinking excessively and am not really a full vegetarian . He told me I didn’t have sciatica and that I was vitamin b deficient. After I took the vitamin b complex for a week, I felt like my old self again with now pains and was able to run around.. I messed up because friends were in town and I thought I could handle “partying” with them drank and guilty of doing some drugs. It wasn’t a lot, but was enough to make me feel the same again and also spark up a sinus infection.
    I went back to my orthopedic doctor and I told him the truth and he made a vitamin b transfusion. It’s the second day and I still have tingling in my body especially my left leg and feel fatigued. I totally understand that I definitely messed up with my poor choices. And am super ready for a lifestyle change. I just would like to know if this permanent nerve damage, and if there is anything else I can take if I don’t get better. Or if the shot is better than the transfusion? i’m not sure yet how many milograms were put in me. But I am taking the vitamin b, magnesium, vitamin D and C, along with Calcium. I know I am a stupid kid, but in a way its a blessing in disguise showing me that I am not being good to myself by self destructive. Please help me. Thank you, God Bless.

  8. I am going through some attacks formore than 4/years now each each month my body goes through a debilitating attack. Can not get b12 to absorb. Doctor does know what is wrong, worst starts a week before period fatigue blurred vision confusion then worsens right before inflammation breathing labored. Other blood test high MCV, MCH and Absolute Eosinophils. SymptomsMy symptoms inflammation all over (tight feeling, painful in areas of body I use more often). Bluured vision with a pressure and delay in eye (right), crawling skin every once in a while, inflammation, pain, confusion, mood changes, circulation issues, palpation in heart with instead tight feeling around throat, cystics on face, low testosterone and I take a compound for also still low and progesterone even though I take a compound and estrogen very high. I feel like my body is under attack I am no use to myself or family. I can nearly move or talk and the my period starts I get a some relief. The attacked are getting more severe. I am afraid I am getting worse and no one is helping me. I am getting worse. My body is not absorbing any b12, progesterone, testosterone.

    • Sounds like you already know you are B12 deficient. Are you getting large doses of B12? You may need injections, typically these are 1000 mcg (micrograms). Normal RDA for B12 is 2.5 mcg so you can see injections are a large dose. The amount of B12 in a multivitamin is not enough.

      Since your eosinphils are high, get tested for parasites. Elevated eosinphils can be one of the signs. Parasites can rob your body of B12, so if you are getting lots then that could be where it is going.

  9. I am looking for a cause of the neuropathy in my feet. I am 50, have had the problem since 2012 and it is getting worse. In 2013 my homocystine level was 8. I have read that anything above 7 should be followed up with additional bloodwork. In 2014 my neurologist ordered bloodwork and my B12 level came back as 384. I didn’t know much about it and she just said it was fine. Even after I have been taking a multivitamin and B12 fairly religiously, my B12 level came back as 360 last month. I recall that my father had very bad neuropathy in his feet but he was not a diabetic. Also, my daughters B12 level came back as 304 and she is having nerve pain in her feet and hands as well as serious psychiatric symptoms. I have been reading a lot about people having problems with B12 levels under 400 and that the level should probably be above 500 to be safe. I think that I may have an inherited condition concerning how my body processes B12 that came from my father and was passed by me onto my daughter. I don’t think it is full blown pernicious anemia, but I don’t know. Any thoughts someone could share would be greatfully appreciated. If my neuropathy is from a B12 deficiency, any info as to whether or not and how long it might take the nerves to regenerate would also be helpful. Is the prognosis better since me and my daughter’s levels were above 300? Thanks!

    • Hi Joe, short answer to your question: get treatment ASAP as you are showing symptoms. You do need to get blood drawn for some tests before your first loading dose of B12, see below.

      The long story: My neuropathy started in fall of 2013, developed into pain that was diagnosed as a neuroma (swollen nerve). It got so bad I could not sleep with anything covering my feet and had to ice my feet every afternoon. The podiatrist insisted I had neuromas so I opted for surgery in late July 2014 to remove one in my right foot. Two weeks later I sensed something wasn’t right and I got progressively more and more ill. 3-1/2 months went by before I was finally diagnosed with a B12 deficiency, by then my B12 was 196 and I had severe neurological symptoms (shooting pains in my legs, palpitations, personality changes, insomnia, and more). I’ve now been getting treatment for 9 months; unfortunately my diagnosis was delayed too long and I still have the neuropathy as well as other nerve problems, and am disabled as a result. I keep hoping for a miracle, in the meantime I’ve started taking a drug to try to calm my nerves as they went on a rampage as a result.

      I highly recommend you buy the book by Sally Pacholok and Jeffrey Stuart, “Could It Be B12? An Epidemic of Misdiagnoses”, it’s available on amazon. In it they say the current low threshold for serum B12 of 200 pg/mL used in the US is way too low. The gray area is 200 – 450 and is where neurological symptoms are known to occur. You and your daughter are within that range and are clearly showing neurological symptoms so you need to find a doctor willing to start treatment. Traditional doctors are likely to balk as you are not below that low threshold, unless you find a really good one. Naturopathic doctors are typically more likely to start treatment.

      The amount of B12 in a multivitamin is not enough to make much difference when you are deficient. The RDA is something like 2.5 mcg (micrograms). Treatment usually consists of a series of high dose 1000 mcg injections. Initially they are quite frequent to load up your system.

      From what I’ve learned, the biggest impact on prognosis is how long you had symptoms before getting treatment. It’s generally felt that the damage is reversible if symptoms have occurred for 3 months or less. Nerves do heal, but they grow very slowly so it can take years.

      Be sure to get a blood draw for methylmalonic acid (MMA), homocysteine (Hcy), intrinsic factor antibody, parietal antibody, folate, and ferritin tests BEFORE you start B12 treatment. A urinary MMA (uMMA) test is best if you can get one. MMA will likely be high if you are B12 deficient and can be used to confirm deficiency (some doctors may know this and start B12 shots even though you are not below the minimum). Hcy will likely also be high, it is associated with cardiac disease and strokes though when high is not specific to a B12 deficiency. After you start B12 injections, your MMA and Hcy should quickly drop back to normal levels. You need the antibody tests to check for pernicious anemia and these should also be done before your first injection as B12 can interfere with the results. It is important to know your ferritin level as when you start getting B12 injections your body will kick into gear making new blood cells and ferritin is needed for that, you may need to take an iron supplement. Folate works hand in hand with B12, and may need to be supplemented as well if it is low.

      You may have MTHFR genetic mutations which can affect the processes in which B12 is involved. This is too complicated to go into right now other than to say you might want to get a genetic test as it takes a while to get the results. If you have a family history of Leber’s disease (affects the eyes) be sure to tell your doctor as the type of B12 traditional doctors use, cyanocobalamin, should not be given. There are other types of B12 available that should be used instead.

      Good luck and I hope you both get treatment promptly.

      • Thank you for the information Tracy. You were right about the MTHFR mutation. I am compound heterozygous for the two variants. As I understand it, MTHFR mutation can cause neuropathy in and of itself and the gene requires adequate B12 to function as well. With my B12 deficiency and MTHFR mutation, no wonder I have neuropathy.

    • Hi Joe,

      Your daughter should also be taking B12. You both should also be taking D3 and Magnesium.

      Have you been checked for Celiac? I believe that runs in families. Try to eat as organic as you can, and if you have the room, grow your own veggies. The more I read and hear, the more squeamish I am about our food supply. It doesn’t stop me from eating Taco Bell and then Peanut Chews, you understand, but at least I know that stuff is not supposed to be good for me.

      Good Luck.

    • Does anyone else have trouble posting here? Overtime I go to post something, I get an error message that the site’s server is down, so I click the button that says to try a live version, then I hit the back button, and there is my post.
      Today, when I add a post, and then try to add another, my first post is still in the comments section.
      Is it me, or the site? Either way, it’s frustrating, especially the times when my post does not appear.

      • Ann, yes that happens to me when I post to this page, I just ignore the error. I think it might be due to so many comments attached to this particular page. This has got to be one of the most highly commented on pages Chris Kesser has on his blog.

    • Joe, I don’t know if your still tracking this as there’s a 15 month spread since your question. Medications, chemical exposure and air pollution can cause neuropathy.

      Ref: http://emedicine.medscape.com/article/1175276-overview

      Posted earlier today; Chemically induced Neuropathy can be caused by medications, chemicals and air pollution.

      Quote: Management
      In addition to advising the patient to avoid the causative drug or occupational or environmental toxin, management of toxic neuropathy can include the following:

      Ref: Toxic Neuropathy: Practice Essentials, Background, Pathophysiology
      emedicine.medscape.com/article/1175276-overview
      Feb 3, 2016 – Toxic neuropathy refers to neuropathy caused by drug ingestion, drug or chemical abuse, or industrial chemical exposure from the workplace …

  10. My tongue became swollen 10 months ago and my RBC count is 3.8, has been for years. I was given one B12 injection a week for 4 weeks in January then one a month since January. My tongue is still swollen and in fact tingles from time to time. I also take 6 to 8 doses of transdermal B12 daily. Am finding it impossible to take folic acid as I lack enough stomach acid. Nothing has changed. Totally fed up, have already changed my doctor and can’t do it again.

    • I didn’t have a swollen tongue, but I did have really red Geographic Tongue, which still comes and goes, but not so often, and not so bad. It used to go up to the roof of my mouth, and onto my tonsils.

      Anyway, the b12 and the b complex, including folic acid did not help it that much. What helped was the D3 and the Magnesium.

      Can’t you get a shot , a patch, or an oil with folic acid. How about taking it with orange juice, or Apple Cider Vinegar with the mother still in it mixed with water and unpasteurized honey? I haven’t been taking Bragg’s ACV for awhile because, after a month or so, uch, but it really makes me feel good.

      I believe that you have to get the right combination of things in order for your body to work well. Many people tout honey and other bee products. Try adding some of them. I don’t remember the name of the Canadian company itself, but I subscribe to newsletter called “Bee Pollen Buzz”. If you Google it, it should pop up. Try getting something from there.

      For you, and everybody, non-vitamin things that I think are helpful:

      Soups and stews (even if you are vegan, use veggies)
      Unfiltered Apple Cider Vinegar with the mother still in it
      Cod Liver Oil — not just fish or Krill oil
      Exercise — even if you walk for 3 minutes a day, that’s somthin more than nothin
      Stretching — it helps unclog the Lymph system
      Unfiltered and unpasturized bee products
      If you are not vegan, Marrow — I am still up in the air about organ meats

      I read a lot online and listen (tv) a lot, and know what works for me, and I filter out the phonies, so I am confident that the above can really help.

  11. About 10yrs. ago I started having numbness and tingling in my feet, tiredness, mouth ulcers. I went to so many doctors and had numerous MRI’s, lumbar puncture and bloodwork done. Two yrs, went by until a doctor found out about my situation and asked me to make an appt. With doing more bloodwork and this time testing my B-12, I have a B12 deficiency. My level was severely low at 41. He started me on a regimen of cynocobalamin shots and my level went up over the next months. Later, I started using a B12 nasal spray instead of shots. Well as my levels was very good, I still had numbness and tingling and my gait is terrible. Then I started using Transdermoil (methycobalamin) and although I have nerve damage, theres a slow process of nerve regereration happening. It may take a long time for my nerves to regenerate fully but I feel better using methylcobalamin oil rather than cynocobalamin. Doctors here just are not familiar with the knowledge of B12 deficiency and thats why I started doing research on B12 on the internet.

    • may be u take to much nuts (family of seeds etc ground nut, peanut, walnut etc) may cause uric acid problem usually if u stop taking uric acid foods this problem may go away after 6 months

  12. I was diagnosed as low B-12 four years ago (using a MMA test) and started giving myself B-12 shots bi-weekly until I was in a good range and then monthly. My new PCP states that my B-12 level is normal (regular B-12 blood test) and has taken me off shots. I am starting to get the symptoms again of low B-12 (migraines, foggy feeling, fatigue, etc). Pernicious Anemia runs in my maternal family side. I understood I would have to take shots for life so I was surprised I was taken off the shots. Should I request my new PCP run an MMA test

    • Have you been tested for pernicious anemia? You should have been tested when you were diagnosed with a B12 deficiency, especially since it is known to run in your family. Get tested if you haven’t already.

      Other reasons your B12 level has dropped includes gut parasites and SIBO (small intestinal bacterial overgrowth) which can rob your body of B12.

  13. I went to the doctor complaining of dizziness, memory loss, stumbling, depression, numb feet and hands, and many of the other symptoms mentioned here. My B-12 was 115. I have been on B-12 shots for 4 months, every other week. I just had blood work again and it still only 249. She said that is very low considering I have been having shots for 4 months. She wants me to see a Gastroenterologist. What would case my levels to not increase. I could not tell a bit of difference from the shots. I feel exactly the same as when I started. I want to feel better. I have been like this for so long, I guess it just feels normal to me now. It is all I have known for so many years. Thank you for your input.

    • Dianna,
      The B-12 shots you’re getting are probably cyanocobalamin. People with certain genetic polymorphisms lack the enzymes necessary to effectively convert cyanocobalamin to methylcobalamin, the active form of B12. You could look into getting injectable methylcobalamin from a compounded pharmacy, as one solution.

      What I use is a methylcobalamin/adenosylcobalamin transdermal oil from b12oils.com. It’s a red oil that comes in a pre-dosed pump. I apply it on my skin at least once a day and rub it in until the red disappears – takes maybe 15 seconds. You could use daily or even more frequent applications of the b12oil while continuing your injections.

      You need Vitamin B2 to metabolize Vitamin B12. You might check out whether you have any other nutrient deficiencies.

      The serum B12 test is not very accurate. A MMA test (methylmalonic acid) would give you a truer picture of your B12 status.

    • A couple years ago my doctor suspected mal-absorption issues, as my B12, Iron, and Vitamin D (possibly others, too) levels were all below HALF of the minimum recommended level. Colonoscopy revealed no evidence of Celiac Disease…my doctor didn’t pursue any other causes, and eventually I changed my doctor! However, I have heard him and other doctors say that a swollen tongue can be an indication of low Iron levels. If Iron, Ferratin, and B12 levels have not been tested, it’s a good place to start….also fairly easy to treat with prescriptions/injections.

  14. I HAVE BEEN TAKING B12 SHOTS FOR 5 MONTHS. I TOOK 1 ONCE A WEEK FOR 3 WEEKS THEN ONCE A MONTH. I FELT A LITTLE BETTER AFTER TAKING THE SHOT THEN I WOULD GO BACK TO FEELING TIRED, NO ENERGY, ECT. MY DR RAISED THE DOSAGE TO BI-WEEKLY AND THAT WASA COUPLE MONTHS AGO. I STILL FEEL THE SAME WAY. WHEN MY DR’S OFFICE CALLED TO TELL ME MY B12 WAS LOW AND THAT I HAD TO TAKE INJECTIONS PROBABLY FOR THE REST OF MY LIFE, SHE NEVER TOLD ME WHAT MY LEVELS WERE OR WHAT CAUSED IT. WHY DO I STILL FEEL THIS WAY???

    • Hi Lisa,
      I have a few thoughts for you:

      a) 5 months isn’t that long. It has taken me over 3 years of taking the sublinguals, and I still feel tired, but I do feel better. Many of my symptoms, like foot pain, got better right away, so if you have symptoms besides fatigue that don’t seem to be getting better, I would discuss other diseases — diseases which might have developed because of low B12 — with your doctor. Lupus is the first one that comes to mind.

      b) Take other vitamins — B complex, D3, Folic Acid, Iron, Zinc, C, and Probiotic.

      c) Go to a pulmonologist and have yourself checked for asthma. It kind of snuck up on me, but my first visit cleaned out my lungs so well, I had tremendous energy, and didn’t even need my 1x glasses to read! It only lasted for about 2 days, but it was great.

      d) Have your liver checked out. If there is something wrong, there are a lot of things they can do. The latest news is even if your liver is really bad, you can heal it by drinking 4-5 cups of black coffee a day.

      e) See about weekly B12 shots.

      It’s good that you have a B12 proactive physician, so I would discuss all my symptoms, even the smallest weird thing you notice lately, with him, and see if he has any ideas. Good luck!

      • Hi, mostly Vitamin B12 & D3 have similar symptoms except those related to neurological (and some which I may not know). I would suggest please check your Vitamin D3 levels and if found deficient or even insufficient get those shots too. Hope to hear to recovering soon.

        Cheers
        Yash

  15. What many people don’t know is that you can have a high level of B12 but it’s not reaching the cells. My serum level of B12 is 1500 (I have taken methy B12 shots for years) but in spite of supplementation of it and folate, my homocysteine level was still high. My doctor ran a micronutrient test that showed in spite of all those shots, I’m deficient in B12 in the cells. I have a c677 methylation defect. So don’t assume your serum levels are accurate.

    • Collen- were you able to fix this? If so, I’m curious as to how. I’m starting b12 and methylfolate soon myself.

    • I had the same experience- I have very high b12 serum level when blood tested, but neurological b12 defiency symptoms and a nutrient test showed the defiency. I’m homozygous for c677t. I’ve been supplementing with a methyl compound and I’m still deficient according to that nutrient test and symptoms are bad as ever. Has anyone else in this situation found a solution? I’ve been on b12 shots in the past but maybe not enough or consistently enough.

  16. So you never explained what b12 is? Is it a vitamin or a bacteria? I also could not find any links to studies!! You are not a MD or even a doctor so you can’t advise people without providing evidence to the studies you reference? This is dangerous information Chris and you are misleading the public. I feel sorry for people that take your paleo advice, A diet never proven to be healthy or primal for that matter and in fact the studies show the opposite. Seriously I feel sorry for you that you make money while claiming to help people improve their health. You need to provide peer reviewed studies or it’s just an opinion from a guy who created a website.

    • Jon – with all due respect – you need to wake up and smell the carbohydrates. This unsubstantiated ‘Paleo diet’ as you refer to it at heart is simply eating real food. Not food from boxes and plastic wrappers. I do not eat Paleo style – I eat about 100% meat. Now there is something to get worked up about.

  17. Not sure if this helps or if anyone is interested but I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption). Apparently it came out a month or two ago. Has anyone heard of it or tried it??

    • Yes, I’ve heard of Eligen but none of my doctors have. I would love to know whether it will work for those of us with pernicious anemia, who cannot absorb B12 from food. It would be great to just take a pill every day.

      My guess is that it will be heavily marketed to users of PPIs and H2 blockers. Those drugs decrease stomach acid, and low/no stomach interferes with absorption of B12 from food, eventually leading to a B12 deficiency. This could be a way around that problem since many don’t know the danger of long term use of those drugs.

      It may also be prescribed to those who have gastric surgery.

      • I am finally feeling well again. But a year and a half ago I was extremely B12 deficient. No energy, couldn’t see or walk straight. My Dr’s couldn’t help etc.. Anyways, after carving pumpkins before Halloween, roasting the seeds and eating a lot of them one night. I passed a long tapeworm! (I know, it was aweful) it’s embarrassing too, but after that, I started getting b12 shots and am better now! Noone would have known it was a tapeworm if I hadn’t eaten those pumpkin seeds!

        Just don’t rely on dr’s. Luckily I found out the cause randomly. But they would not have found that out. One Dr. tried putting me on anti depressants b/c I was so tired.

  18. I began using an organic vegan based B12 spray after I had an oral surgery that left my lip and chin numb for weeks after surgery was done. I developed severe recurrent yeast infections. I realized that this was in part due to the antibiotics which were given to me after surgery. BUT as Chris Kresser states if the only true form of B12 comes from animals and the vegan version of B12 spray uses Brewers yeast (saccharomyces cerevisiae) to derive B12 then does that mean it’s pointless to be taking vegan B12 supplements? This seems to be the appropriate conclusion. So my question is: how do B12 injections differ from vegan sources of methocobalymin? Is it safe to inject B12 if the vegan methocobalymin (derived using Brewers yeast) may have been the culprit in my yeast infection? How are the shots different?

    • Candida albicans is the yeast that causes yeast infections. You can combat it with Primal Defense ULTRA (contains Saccharomyces boulardii, very beneficial), caprylic acid, gymnema sylvestre, etc.

      Before abandoning the spray, have your B12 levels tested. Sublingual B12 can be comparable to shots and much less expensive. Best of luck.

  19. Can anyone chime in on this process to make homemade B12 mineral brews. You ferment a mineral solution which contains trace amounts of cobalt. The idea being the bacteria can produce b12. Here is the process…

    “What I have been doing is to buy a very high quality probiotic with more than twelve strains (I would like to synthesize one myself from a pristine organic source when I learn the process). I then add this probiotic to water or coconut water in a good sized mason jar or a fresh local organic fruit juice you may have ripe in your area… then I add some ionic minerals and I fill up the jar with liquid and place a loose cap on it and let it brew for one to three days in a warm and dark place- if you have water kefir grains this is better to add to as well- if you are using only water and no juice then it is important to add about one to two ounces of sugar to a quarter to half gallon of water this way the bacteria can “wake up” and start metabolism and proliferation using the sugar as a fuel source. After one to three days the brew will not have sugar and it will have bubbles because of bacteria releasing Carbon Dioxide. The Key is to give the bacteria enough minerals to convert into usable forms for the body for example high quality Ionic Minerals Eco Organics Augustus Dunning in Texas is well made and he can give you an idea how this process works by the analogy of making compost tea. In essence instead of making compost tea for your garden you are making a highly utilizable mineral brew for your body, these bacteria will become house cleaners in the body. One the brew is done you can drink half of it in a day, at the end of the day refill with water and add sugar- or add fresh juice or coconut water and let brew again, because of the activity being present in the brew it will be ready in around twelve hours at around 75 degrees F. So this may well be a source of B twelve if cobalt is present in the trace minerals you feed the brew”