B12 deficiency: a silent epidemic with serious consequences

Sad lonely pensive old senior woman

What do all of these diseases have in common?

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

Answer: they can all mimic the signs and symptoms of vitamin B12 deficiency.

B12 deficiency: an invisible epidemic

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

However, B12 deficiency is far more common than most health care practitioners and the general public realize. Data from the Tufts University Framingham Offspring Study suggest that 40 percent of people between the ages of 26 and 83 have plasma B12 levels in the low normal range – a range at which many experience neurological symptoms. 9 percent had outright deficiency, and 16 percent exhibited “near deficiency”. Most surprising to the researchers was the fact that low B12 levels were as common in younger people as they were in the elderly.

That said, B12 deficiency has been estimated to affect about 40% of people over 60 years of age. It’s entirely possible that at least some of the symptoms we attribute to “normal” aging – such as memory loss, cognitive decline, decreased mobility, etc. – are at least in part caused by B12 deficiency.

Why is B12 deficiency so under-diagnosed?

B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so-called “normal” levels of B12.

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

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.

What is vitamin B12 and why do you need it?

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

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

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

Why is B12 deficiency so common?

The absorption of B12 is complex and involves several steps – each of which can go wrong. Causes of B12 malabsorption include:

  • intestinal dysbiosis
  • leaky gut and/or gut inflammation
  • atrophic gastrits or hypochlorhydria (low stomach acid)
  • pernicious anemia (autoimmune condition)
  • medications (especially PPIs and other acid-suppressing drugs)
  • alcohol
  • exposure to nitrous oxide (during surgery or recreational use)

This explains why B12 deficiency can occur even in people eating large amounts of B12-containing animal products. In fact, many of my patients that are B12 deficient are following a Paleo diet where they eat meat 2-3 times a day.

In general, the following groups are at greatest risk for B12 deficiency:

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

Note to vegetarians and vegans: B12 is found ONLY in animal products

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

A common myth amongst vegetarians and vegans is that it’s possible to get B12 from plant sources like seaweed, fermented soy, spirulina and brewers yeast. But plant foods said to contain B12 actually contain B12 analogs called cobamides that block intake of and increase the need for true B12.

This explains why studies consistently demonstrate that up to 50% of long-term vegetarians and 80% of vegans are deficient in B12.

The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age 6 on a vegan diet are still B12 deficient even years after they start eating at least some animal products. In one study, the researchers found:

…a significant association between cobalamin [b12] status and performance on tests measuring fluid intelligence, spatial ability and short-term memory” with formerly vegan kids scoring lower than omnivorous kids in each case.

The deficit in fluid intelligence is particularly troubling, the researchers said, because:

…it involves reasoning, the capacity to solve complex problems, abstract thinking ability and the ability to learn. Any defect in this area may have far-reaching consequences for individual functioning.

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

Treatment of B12 deficiency

One of the greatest tragedies of the B12 epidemic is that diagnosis and treatment is relatively easy and cheap – especially when compared to treatment of the diseases B12 deficiency can cause. A B12 test can be performed by any laboratory, and should be covered by insurance. If you don’t have insurance, you can order it yourself from a lab like DirectLabs.com for $60.

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

Some recent studies have suggested that high dose oral or nasal administration may be as effective as injections for those with B12 malabsorption problems. However, most B12 experts still recommend injections for people with pernicious anemia and advanced B12 deficiency involving neurological symptoms.

Cyanaocobalamin is the most frequently used form of B12 supplementation in the US. But recent evidence suggests that hydroxycobalamin (frequently used in Europe) is superior to cyanocobalamin, and methylcobalamin may be superior to both – especially for neurological disease.

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

If you suspect you have B12 deficiency, the first step is to get tested. You need an accurate baseline to work from. If you are B12 deficient, the next step is to identify the mechanism causing the deficiency. This is something you’ll probably need help with from a medical practitioner. Once the mechanism is identified, the appropriate form (injection, oral, sublingual or nasal) of supplementation, the dose and the length of treatment can be selected.

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

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Comments Join the Conversation

  1. Mary Gannon says

    Chris,

    I just ordered B12 supplements because I just found out I am deficient. What I don’t understand is for how long I have to supplement. Is that forever or until my B12 is higher? What is the rule of thumb for stopping taking vitamins? Thank you

    • Tracy says

      Mary,

      You need to find out the cause of your B12 deficiency. You should be tested for pernicious anemia before taking any B12. I’d be cautious about getting this tested after starting on B12 as it can interfere with the test results.

      Do you have any of these other B12 deficiency risks: vegetarian/vegan, used PPIs or H2 blockers, take Metformin, had nitrous oxide anesthesia for surgery or dental work, gastric surgery?

      If you have pernicious anemia you will need treatment for life.

  2. gaurav says

    hi
    I am having severe vitamin b12 deficiency.(167)
    my doctor prescribed me cyanocobalamin (vitcofol).
    but i would like to take methylcobalamin instead.
    Is it ok.
    also can you tell me how to self inject methylcobalamin by syringe.
    thanks in advance.

    • Michael Lim says

      I did a little researcg on this before and this is what I understand: If you have a high concentration of mercury in your system, methylcobalamin isn’t advisable. This will react with mercury and produce methyl mercury, which is worse as it is more reactive biologically. Perhaps someone else can shed more light on this.

  3. says

    Hi, Chris – thanks for writing such an important article. I only wish I’d seen it in 2011 when you first published it! For the last 7 years or so, I struggled with many symptoms of an undiagnosed B12 deficiency. In fact, I may have been low in B12 most of my life.

    It reached a crisis level a month ago, and by sheer luck I was able to diagnose it, then confirm via an MMA test at my doctor showing a reading of 340. Details of my story are here:

    http://ghn.thegraychannel.com/uncategorized/my-sobering-wake-up-call-b12-deficiency/

    Neurological symptoms for me, unfortunately, are severe, and while I’ve recovered some, after 3 weeks of supplementation with oral methylcobalamin, 1 mg per day, heavy fatigue is still with me, and my doctor has very little advice for how to proceed.

    I would love it if you could write a follow-up article that focuses on the best approaches to recovery. It’s not clear if taking >1 mg methylcobalamin is necessary to heal long term neurological damage, MTHFR gene mutations add more layers of confusion for the newly initiated, and since this truly is an epidemic, that our doctors usually know very little about, we look to people like yourself to continue speaking out and taking the lead.

    Thanks again.

    TC

    • AnnF says

      Hi Terry,

      Three weeks isn’t that long at all, so stick with it. If you are taking sublinguals, you have to seriously increase your dose. I take 10,000mcg, or 10mg a day. I also take Vitamin D, just added B2, iron, zinc, magnesium, a multi, and B complex.

      I knew there was something wrong in my 30s when everything seemed to be getting just to much and was always tired. Symptoms kept piling. The one day I went to the doctor for a cough, and he kind of knee-jerk diagnosed me with acid reflux and prescribed the heavy duty acid blockers an antacids. I didn’t think that was it, so I went online and looked up something like problems with taking antacids for a long time. One of the artcles that popped up was “Antacids Ruined My Life”, where tge author described her B12 deficiency, and there were ALL The symptoms I was experiencing right down to the sore tongue. Symptoms that I did tell my doctor about. She just dismissed them, seemed miffed that I had seen other doctors, and upped my prescription of Amlodipine for my admittedly VERY high blood pressure.

      Anyway, it took about a month for some of my symptoms to go away, but after three years, and adding the other vitamins, I still get very tired. I feel a lot better, but I still go from general to heavy duty fatigue.

      I think it would help if I exercised, but I now have asthma, brought on, I am pretty sure, by the Amlodipine I took for my HBP.

      I meant to explain more than complain. My advice, seriously up the B12 dosage and add the vitamins I wrote down.

      Good Luck

  4. Terry Chattsworth says

    I really appreciate this article, Chris. I’ve been struggling with the symptoms of B12 deficiency since the late 1990s, didn’t realize it – and was never tested by any doctor because they assumed a meat-eater wouldn’t require B12 supplementation.

    1 month ago my symptoms reached a crisis point, and I was luckily able to make my own diagnosis, then follow up tests with my doctor confirmed it: an MMA test of 340.

    Unfortunately my neurological problems became advanced enough in recent months that I may not fully recover. I’ve done 3 weeks of supplementation and while much has improved, heavy fatigue has not. More detail on my story can be found here:

    http://ghn.thegraychannel.com/uncategorized/my-sobering-wake-up-call-b12-deficiency/

    Diagnosis is only half the battle. I’d love it if you could do an update on your B12 article that focuses on approaches to recovery. The MTHFR gene mutation and other variables make deciphering and applying protocols really confusing, and since B12 deficiency really is an epidemic that most of our conventional doctors don’t include in their workups, we look to people like you, Chris, to lead the way.

    Thanks again!

    TC

  5. divya says

    Hello chris
    I have been suffering from hair fall problem since7-8 years. 3 years ago i was diagnosed with iron deficiency. it was 0.7(too low). I started with medications and thought it is the end of the problem but last year (august 2014)along with hair fall a lot of problems such as fatigue,weight loss, improper digestion, farting,weakness engulfed me. It was b12 deficiency(130 pg/ml) i started getting b12 shots and december 2014 all my problems were solved. But from the past 2 months again weight loss, hair fall, weakness, digestive issues(i dont feel like eating anything), gas have started. in 2014 i also had endoscopy done it showed chronic gastritis. What should i do? please help

    • Mike S. says

      @Divya, Are you still on B12 shots? If you don’t address the reason why you became deficient in the first place, you will become deficient again without constant supplementation.

      The iron issue along with B12 may indicate some other problem such as low stomach acid (achlorhydria) or gut dysbiosis interfering with absorption of nutriets. Chris has a lot of info on this site about gut issues.

      • divya says

        Yes I have the same symptoms again. Rather more this time. Gastro issues are there. I am not able to eat anything. If i eat anything i have gas, bloating and feeling like vomitting

        • Pankaj Arora says

          Hi Divya,
          For the last one month, i started developing symptoms of little dizziness and unsteady gait. First i thought its related to Inner Ear and thats why i saw a ENT specialist, he told that it might be related to inner ear inflammation and asked me to wait and watch without prescribing any medicines.
          But the situation remained the same and fatigue also started groping me. I decided to see an experienced neurologist and did CT Scan as well, it came fine.
          The neurologist immediately asked me to get the thyroid and b12 levels checked. The thyroid came normal but my b12 level was 229 and according the neurologist, if the level is below 500, i should get started with b12 injections.
          I had my first injection yesterday evening and i am hoping my symptoms would go in the near future.
          The cause of b12 deficiency according to the doctor is the long term use of Proton Pump Inhibitors (nexpro,parit,acilog etc.) for my acute gastritis.
          Thought to share with you as you have very similar symptoms and please suggest anything that would help me get rid of these uneasy symptoms.

  6. Divya says

    Hi Chris
    I was having problem of hair loss since 8-9 years. I tried many things but nothing worked. Three years ago i was diagnosed with iron deficiency. My ferritin was 0.7(too low). Last year in august 2014 i was diagnosed with vitamin b12 deficiency(pg/ml), vitamin d was also less. I was on bed for almost 2 months with b12 shots. My digestive issues and hair fall got completely solved in december. I am again experiencing a lot off hair fall,weakness, weightloss, poor digestion, farting, burbs(i even dont feel like eating anything). I had endoscopy also done last year. It showed gastritis. i dont have wheat allergy. What should i do? please help

  7. Gabi says

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

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

    thank you

    • Lynn_M says

      Gabi,

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

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

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

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

      • Lynn_M says

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

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

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

  8. Michael R says

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

    • Tracy says

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

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

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

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

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

    • Tanya says

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

  9. Jean says

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

    • Tracy says

      Jean,

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

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

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

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

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

      Good luck in your recovery!

    • Ren says

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

    • Joyce Kazanjian says

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

      • Judy says

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

      • Tracy says

        Hi Joyce,

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

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

        • Judy says

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

  10. Taura says

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

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

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

    Thank you!

    • Tracy says

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

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

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

    • tnt3266 says

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

      • Taura says

        tnt3266

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

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

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

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

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

        Thanks for the advice :)

    • Tracy says

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

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

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

    • Lynn_M says

      Taura,

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

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

      • Taura says

        Lynn_M

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

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

    • Lynn_M says

      Taura,

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

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

  11. Jeanne Semones says

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

    • Tracy says

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

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

    • Tracy says

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

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

      • Jeanne Semones says

        Tracy,

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

        • Tracy says

          Jeanne,

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

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

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

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

  12. says

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

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

    • Mike S. says

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

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

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

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

    • Tracy says

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

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

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

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

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

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

  13. Sandra says

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

  14. Kimberly Miller says

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

    • Tracy says

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

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

  15. Joe says

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

    • Tracy says

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

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

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

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

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

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

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

      Good luck and I hope you both get treatment promptly.

      • Joe says

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

    • AnnF says

      Hi Joe,

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

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

      Good Luck.

    • AnnF says

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

      • Tracy says

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

  16. Rose says

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

    • AnnF says

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

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

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

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

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

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

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

  17. Judy says

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

    • tom says

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

  18. Karen says

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

    • Tracy says

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

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

  19. Dianna says

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

    • Lynn_M says

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

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

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

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

    • Loretta M says

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

  20. LISA says

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

    • AnnF says

      Hi Lisa,
      I have a few thoughts for you:

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

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

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

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

      e) See about weekly B12 shots.

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

      • Yash says

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

        Cheers
        Yash

  21. Colleen says

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

    • Ally says

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

    • Candace says

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

  22. Jon says

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

    • wy~ says

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

  23. Chris says

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

    • Tracy says

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

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

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

      • whitleigh says

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

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

  24. Jane says

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

    • framistat says

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

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

  25. Ian says

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

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

  26. kristy says

    I feel so frustrated. My results came back as 142 p/mol and my doctors response was that i need to ‘stop reading up on B12 deficiency on the internet’ as my level is ‘normal’. I would like to start trying for a baby and would like my levels to be a lot higher. My GP told me that my B12 levels are of no concern. I could accept this if it were easy to simply get a second opinion however I live in a remote community and there is no other doctor. She honestly made me feel like I was a moron for requesting a B12 shot with my current levels. Crap Doctor award goes to her.

    • Samantha says

      My B12 level was 232 pg/mL and my doctor had me come in everyday one week and get a shot, next week twice and I did twice a week for a month, then once a week for a month, then the following month bi-weekly, and then finally once a month. My symptoms were fatigue, tired all the time, depression, memory loss, body aches, and dizziness. But also my vitamin D level was horribly off along with the B12. If I were you I would get a second opinion. My level was 232 pg/mL but my physician said that was extremely too low. Good luck!!

    • AnnF says

      Hi Kristy,

      Unfortunately, a lot of doctors are ignorant about B12. They feel it is homeopathic nonsense. I had CLASSIC B12 symptoms, right down to the red sore tongue, but my doctor didn’t diagnose me. She was only worried about my blood pressure.

      If I were you, I would definitly start taking at least 5000mcg a day of B12. I take Natural Factors that I get through Drugstore.com. You should also take Folic Acid. Some B-complex pills have it, and some don’t (you should take a B-complex, but ignore their B12). Check out different OTC pre-natal vitamins for the rest of your vitamins. See if your doctor will test you, and give you the right info for D. She might, they are all into D now. I don’t know what the right number is, but if it is low, make sure you spend 15 minutes in the sun every day without sun block — that includes face cream with sun block. If you have to take a supplement, I take VitaFusion D3.

      Good Luck!

      • Ally says

        Many people cannot utilize folic acid, especially if they have the mthfr gene mutation. A prenatal with folate or methylfolate is much better than folic acid.

        • Greg says

          Ally, that is not really true. For a start folate is the ionized form of folic acid. It is used as the back-bone for many derivatives of folate. All people, regardless of their MTHFR status can use folate for their folate cycle, as it does not involved MTHFR. In contrast, you cannot use methyl-folate in the folate cycle unless you first remove the methyl group to make tetrahydrofolate. For this you need the enzyme methionine synthase, BUT in order for that enzyme to work you need methyl B12 as a co-factor for methionine synthase. Thus you cannot use 5MTHF if you are severely B12 deficient. This is regardless of your MTHFR status. MTHFR only becomes involved in this process in order to move folate out of the folate cycle so that you can use the resultant 5-MTHF as a methyl donor for the methylation cycle. So theoretically you can use either folic acid (folate) or 5MTHF for the folate cycle, but you can only use 5MTHF if you have sufficient B12 for methionine synthase to work.

          • Ally says

            Yes, I absolutley agree that methylcobalamin is needed. It’s very important to have adequate levels of b12, specifically adequate intracellular levels, in order to utilize methylfolate and improve methylation. I disagree on two things, however. Folic acid is NOT the same as folate. Folic acid is synthetic, while folate is found in food. The terms cannot be used interchangeably. Those with the mthfr mutation, especially those who are homozygous, lack the ability to break down folic acid. If one is heterozygous, the ability is approximately 30% reduced. If homozygous, the ability can be dangerously low at around 20-30%. Depending on other factors, including lifestyle, nutrition, other snp’s, etc, folic acid can build up in the blood in those who aren’t methylation well and cause many problems. If a woman knows she has mthfr, she is much better off supplementing with a prenatal that contains methylfolate. Pregnancy is a time of high demand for folate, and if the mother or baby have mthfr, and are not receiving adequate amounts of folate or methylfolate needed for growth, repair, methylation, etc, problems can arise. Again, I defenitley agree other cofactors are needed, but as a dietitian and someone with mthfr, I whole heartedly disagree that folic acid is safe for those with mthfr, especially women of child bearing age.

            • Greg says

              No Ally, you are not correct about folate. Folic acid, is the unionized form of the vitamin, the ionized salt form is folate, thus sodium folate, would be how you describe the sodium salt of folic acid. Thus if you take folic acid the carboxyl group is COOH, now if you then add sodium hydroxide to a solution of folic acid the change in pH will ionize the folic acid from COOH to COO-, The sodium ion (Na+) will then associate with the negative charge on the now ionized folic acid and form the complex sodium-folate Na+Folate-. This an incredibly basic bit of chemistry and I cannot understand why people don’t just check this. The same thing happens with most organic acid, such as acetic acid (R-COOH), when this is neutralized with sodium hydroxide, it becomes sodium acetate (Na+RCOO-), which you can purify as a salt. When you put folate into the stomach, the reduced pH in the stomach turns it into folic acid as the carboxyl group is now not ionized.
              Once either folic acid (folate) or 5MTHF enter the folate cycle THEY ARE IDENTICAL no matter which form was administered.

              • Ally says

                I think we’re going to have to agree to disagree on this. I understand what you’re saying, but that doesn’t change the fact that those with mthfr cannot break down and utilize folic acid. They lack the enzyme to do so. Folate contains some methylfolate, but not enough to support methylation. Thus, with low amounts of the usable form of methylfolate in food, and an inability to breakdown folic acid, supplementation with methylfolate is necessary for those with mthfr. Again, as someone who has been directly affected by this mutation and who works in the field of nutrition (and yes, I took a lot of chemistry), I stand by my original statement. I encourage you to read and learn about how the two are different and how those with the mutation are affected. Here’s an article from Chris kresser himself explaining it. http://chriskresser.com/folate-vs-folic-acid/ There are MANY others if you do a simple search. There are even some comments from those on this thread with mthfr who commented about the need for methylfolate and methylcobalamin. I’m not tring to argue. I’m merely passionate about this topic because of how poorly it began affecting my life after having a baby.

                • Greg says

                  Hi Ally, You seem to be mixing up two cycles, the folate cycle and the methylation cycle. In the folate cycle, the backbone molecule folic acid(folate) is modified to form different analogues/derivatives of folate. If you start with folate, you then make dihydro-folate, tetrahydro-folate, 5,10-methyelene-tetrahydro-folate and N10-formyltetrahydro-folate. Now these are all analogues/derivatives of folic acid, but in the pH of the body they would be derivatives of folate. They are NOT folate, they are folate analogues or derivatives. Nor are any of them involved in methylation directly. You can make all of these derivatives of folic acid by consuming folic acid as a supplement. So folic acid as a supplement will make all of the folate cycle analogues. For the folate cycle you do not even need MTHFR, as in the presence of enough SAH it is turned off.
                  Now the methylation cycle is very different. Here, technically you don’t need folate analogues at all. If you eat enough methionine you can get your methylation from methionine and thereby make SAM. Now you would have to eat a lot of methionine though. Similarly, if you provided enough methyl B12, you still wouldn’t need 5MTHF, you only need 5MTHF to regenerate methyl B12, once it has donated its methyl group to homocysteine to make methionine. Technically, if you provided enough folic acid, you technically don’t need to provide 5MTHF at all, as you borrow it from the folate cycle, strip it of its methyl group and RETURN it to the folate cycle. Being a cycle the folate backbone goes round and round being modified and forming the various folate analogues.
                  So the problem happens when you want to move the folate analogue out of the folate cycle so that the methyl group that was put onto THF by SHMT can be used to regenerate demethylated methyl B12. This is when you use MTHFR. It has nothing to do with dietary folic acid, 5MTHF or folinic acid, it has to do with modifying 5,10-MTHF and reducing it to 5MTHF. Thus, regardless of the source of the folate backbone, be it folic acid, folinic acid, THF, 5MTHF, it is the 5,10-MTHF that is modified to form 5MTHF. What appears to have happened in the “Great Folate Debate”” is that somewhere along the debate someone has shortened the common “folate analogues” description of all of the folate derivatives in the folate and methylation cycles and changed the terminology to “folates”. One would normally only do this in a paper, or similar publication where you would tell the reader that you were going to group all of these analogues under the terminology “Folate” with the added “analogues” being then understood. FYI despite the claim that folic acid did not exist before supplementation, this is incredibly unlikely as you have the enzyme dihydrofolate synthase. From an evolutionary point of view one would not bother making an enzyme for which their never had been a use, and then maintaining it in the population. Similarly it was the addition of folic acid to food that reduced the incidence of spina bifida, not 5MTHF.

            • Greg says

              Ally, you are also wrong about MTHFR. MTHFR has nothing to do with the initial processing of dietary 5MTHF. This B2/B3 dependent enzyme is responsible for reducing 5,10-methylene-THF (hence the name reductase) to form 5-MTHF. So the enzyme moves and converts folate out of the folate cycle and makes it available to donate the methyl to regenerate Met from homocysteine. Thus, MTHFR has no idea where the 5,10-methylene THF originated from, either as folate or as 5MTHF. Thus MTHFR mutations have no variable influence on the processing of either type of folate analogue. In fact in the absence of B12, only 5,10-methyleneTHF, which has originated from folic acid (folate) will be processed by MTHFR. The good news is though that most people have at least a very small amount of B12 (they would be dead otherwise).

              • Ally says

                I’m not wrong, but maybe you’re misunderstanding what I’m saying. Yes, that’s what mthfr does, but those with the mutation, esp those who are homozygous, have a greatly reduced ability to convert 5,10-methylene-THF to 5-MTHF. 5-mthf is what the body needs and uses to function. Folate from food is a better option for those w the mutation because it already contains some methylfolate. With a 70-80% reduced capacity to metabolize folic acid, it starts to build up in the blood and cause many problems (high homocysteine, birth defects, etc), esp for those who are homozygous, meaning both copies are defected and do not function properly. Low b12 only adds to the issues. Most people with mthfr have problems utilizing b vitamins as well. Generally speaking, supplementing w methylfolate and other b vitamins, bypasses the ineffectiveness of the defected genes, and provides the body with the necessary amount needed for methylation.

                • Greg says

                  Ah, Ally, we have a saying, “convince a person against their will….”. We have studied the incidence of over 165 SNPs in many people with CFS and in the children and mothers of children with ASD. There is no difference in the incidence of MTHFR alleles than in the general population. I even have people who are “-” for all of the common alleles in MTHFR and yet they have CFS. IT IS NOT THE REASON THAT THEY HAVE CFS. What is more they were perfectly fine with their genetics for all their life until they got sick. What is more we have been able to basically cure the CFS without using 5MTHF at all, so once again IT IS NOT THE SOLUTION. It is your nutrition, not your genetics that is the problem.

              • Molly Malone says

                http://www.seekinghealth.com/media/MTHFR-Introduction-Basic.pdf

                1. Folate is vitamin B9
                2. Critical regulator of methylation
                3. Essential for DNA synthesis and repair
                4. Essential for neurotransmitter production
                5. Essential for WBC, RBC and platelet formation and maturation
                6. Essential for detoxification of homocysteine
                7. Folic acid is unnatural to the human body
                8. There are over 150 forms of folate in food
                9. Use the appropriate term – don’t just say ‘ folate ’ – be specific
                10. Folic acid must undergo numerous steps in order for humans to utilize it
                11. Various nutrients and enzymes are needed to convert folic acid into methylfolate
                12. MTHFR is the last and final step from the conversion of folic acid into methylfolate

                http://seekinghealth.org/gift/folatevideo/

                • Greg says

                  Thank you Molley for those functional aspects of the “folate derivatives. Technically you only need to convert folic acid to DHF, which can be used for regeneration of BH2, so it doesn’t need a lot of steps to contribute. Most of the functions come from the folate cycle. In addition, I would regard 5MTHF as being more a regenerative molecule to make methyl B12. It is methyl B12 in combination with methionine synthase that reacts with homocysteine, but it is also betaine. Further, homocysteine should not build up in the cell if CBS is working properly. Evidence now suggests that it is lack of function of CBS that leads to Hcy accumulation. MeCbl is probably really only used when dietary methionine is low and you need to recycle the Hcy, though to Met, then make SAM.
                  As for the 150 different “analogues of folate” most of these would be accounted for by polyglutamate modfication of the various analogues, thus having 1,2,3, 4 or 5 glutamates would increase the number of analogues,. I am sure that you realize that this is required to keep the analogues in the cell. 5MTHF from diet is not polyglutaminated but (like folic acid) must enter the folate cycle for this to occur. In contrast to folic acid though, in the absence of MeB12 this won’t happen with 5MTHF and leads to elevated serum folate, confusing the picture for the diagnostician, particularly when B12 levels are low.

    • Leslie says

      Kristy–If you have the insurance or simply can afford the b 12 shot–Demand It. I live with a b 12 deficiency. I get a shot every 2 weeks and I’m not even 40. It has taken a permanent disabling toll on my body–overlooked for so long. Lord knows–those babies will suck the life out of you! Babies get ‘fed’ first, right? Don’t be afraid to tell your doctor–“It’s my body–Give me the shot.” Then-do your research. Sometimes we just can’t trust the doc to take care of us. Try to find your underlying cause and start there. Best of luck. Get em.

    • Learner says

      Kristy,

      Dug up that Japanese study and take it to your doctor, along with info from the CDC that says under 200 is low.

      There are also some writeups by doctors for doctors online. Print and take to the doctor as well.

      Good luck!

      • AnnF says

        Learner,

        That was very nice of you but I am willing to bet that Kristy’s doctor will not read anything, make a face, and say something nasty.

    • Tracy says

      Kristy,

      At 142 your B12 is low. The gray area where neurological damage can occur is 200-450 pg/mL which corresponds to 148 – 332 pmol/L. I sincerely hope you have gotten treatment by now as you are definitely deficient.

      To convert pg/mL to pmol/L, multiply by 0.738. In the US, we typically use pg/mL. For the lower level of 200 pg/mL, 200 * 0.738 = 148 pmol/L.

      Or to convert your 142 pmol/L to pg/mL, divide it by 0.738. So in more familiar units to those of us in the US, your B12 was 192 pg/mL. Low!

      • Judy says

        Kristy,
        10 yrs. ago I was having numbness and tingling in my feet.
        Went to numerous doctors who couldn’t find out what was causing it. Two years later a doctor did bloodwork on me and found out I had a severe B12 deficiency. By then nerve damage and muscle weakness had already set in. The doctor had me get a B12 injection every day for a month and then broke it down to where I hasd to get a shot once a month.At the time when my deficiency was found my level was an extremely low 41.
        Don’t let this happen to you. Start to get injections or some sort of absorbable way.Good luck.

        • Judy says

          Is there anyone that has severe spacticty from a B12 deficiency in their legs? And if so, is there anything to help it. My legs get so very stiff cuz of neuropathy.

  27. wendy says

    Hi, I’d like to suggest you add symptoms of allergy to your list of things b12 def mimics. At age 21, I was diagnosed with b12 deficiency, at the same time I had random strange allergic episodes of facial swelling/itch etc. The b12 deficiency was put down to vegetarian diet. The facial oedema just stopped happening (I think now because my B12 defiency was treated). Ten years later I was b12 deficient again, and again was having random allergic reactions that included severe facial swelling (I did not connect the 2 things back then). Allergists were never able to come up with an answer other than to take antihistamines. At the same time but unconnected, my b12 defiency was treated and the swelling episodes went away. Fast forward another 15 years and I am plagued by urticaria, again an allergist can’t explain adequately why this has come on but recommends daily antihistamines. I continue on these for a few years – then I am diagnosed with b12 defiency again (and finally confirmed as pernicious anaemia). And again, treatment of the b12 deficiency leads to complete resolution of my allergic symptoms. Can’t be coincidence?

  28. Elizabeth says

    Just asked my primary care doctor to test me for PA. B12 was 214 and intrinsic factor antibody test was 1. Both were stated to be normal on the report but since they were both borderline, I was told to follow up with a GI. I have numbness/tingling in hands and feet, severe fatigue, anxiety, cold intolerance and eye twitches. My mother had PA otherwise I would never have thought to get checked. I want to be sure I am prepared with the right questions for my appointment. Any advice? I am also hypothyroid. I am quite disappointed that since the two conditions are often seen together I was tested for RA, Lupus, Celiac and kidney issues but never PA until my request. How can I trust the next doctor and yet I am unsure of what might be involved to ask the right questions. Appointment is five days away and everyday it seems symptoms are a little worse. So hard to be patient while feeling so unwell. Nothing I can do but wait.

    • AnnF says

      I guess you are waiting to see if you can get the shots. I think you should accentuate your B12 symptoms — though I had CLASSIC symptoms right down to the red painful tongue, and nobody thought I was deficient.
      Anyway, if the next doctor doesn’t give you the injections, don’t wait, start taking the sublinguals or start using the oils.
      For hypothyroid, make sure you eat foods with high iodine, and use iodized salt.
      For the eye twitch, take Magnesium. A word of warning, though, if you get the poops often from the lack of B12, magnesium might worsen that.
      See if you are D deficient, that’s any easy one to diagnose.

      Be careful on the dosage of the other vitamins and minerals, they are not as safe as B12, but you don’t have to worry too much if they are, I’d say, as a rule of thumb, up to 200% the daily recommended allowance.

      There was a study recently that Vitamin E intake might seem like it is adequate, but it can attach itself to certain fat molecules ( I don’t think they were specific about which ones) in the bloodstream, and never make it into the cells at all. Well B12 is the same way, only more things can keep it from doing its job. Then “they” say that taking vitamins does nothing. How they quantify this, I don’t know. The medical community really needs to wake up and learn how bodies really work rather than how they theoretically work.

    • Kerin T says

      You sound like my clone. I just had a doctor’s appointment today and found out I have this problem. The thing that gets me is I’ve had every symptom almost over a 10 year period. A fluke thing had me at this gastrologist who thank God knew what was going on! I’ve had so many tests over the years and never once was tested for this.

  29. Dawn says

    Over the last 3 months, I have started to suffered from what seems like musclular pains, started, in my shoulder and moved around to my knee, foot arm and hands causing a lot of swelling, and stiffness. I have now had 2 blood tests that have ruled out iron and B12. Also, I tend to start having a period 1st one after 19 days lasting 10 days 2nd after 17 days lasting 7 days,started to feel numbness and swelling to the hands and shoulder, and started to bleed after only 6 days, doctor has suggested more bloods to be done in a month I am so tried – think I should go and get bloods tested earlier, any advice.

    • AnnF says

      Hi Dawn,
      First, the muscle pain could simply be caused by your pillow. Every time my arm goes numb and my hip and knee hurt, I know it’s time for a new pillow — use a higher, firmer one rather than two.
      With regards to your period woes, you didn’t say how old you were, but I am in my early 50’s, and starting to go through menopause. I was originally getting my period every 31 days exactly. Then last yearish, I started getting it every 3 weeks, then 33 days, then 3 weeks. Now twice (I am on the second time) I haven’t gotten one for about three months. In between I had 3 in 1 month. The first day of the 3rd one, I had to call my husband at work to ask him to buy me iron on his way home. I definitely think you should be taking iron and zinc to help absorption. I use Feosol (Bifera, the purple one that doesn’t stop up your colon). I have used the regular Feosol in the red, every once in a while I couldn’t go, and it turns my stool the same color as the pill, but it works well and is a lot cheaper.
      Problems with periods can also be caused by cysts/fibroids. I’m not sure, but I think your OB/GYN can use an ultrasound to detect them. You should ask.

      Defintely try B12 5,000mcg, it couldn’t hurt, and it might help. Try it before they diagnose you with Lupus or some other thing when all you might need is B12.
      I did have joint pain and problems with my period for about six months before I started taking B12, so you might have luck with it as well. Good Luck.

        • AnnF says

          Hi MJ,

          I had such pains in my legs and feet that I could barely walk. I started by trying cyanocobalamin, and 2 weeks after I started, I realized that I didn’t have as much pain, and within a month, I could walk up and down stairs with no problem at all.

          The feeling that everything was just too overwhelming took about 2 months to START going away.

          I actually started by taking FOUR 5,000mcg pills a day for, I think, about a year. I eventually lowered the dose to ONE 5,000mcg a day, but my symptoms, especially the foot pain came back after about one month, so now I take 2 about every other day, and that seems to work out well for me.

          I also take TWO Phillips Magnesium pills a day
          TWO VitaFusion Platinum gummies a day
          FOUR VitaFusion D3 a day (I was practically negative)
          ONE Nature Made Super B-Complex every so often. I should take it more often, but it makes me so instantly hungry that I feel extremely nauseous. Vitamins can do that.
          ONE Feosol Bifera a week. ONE a day if I get my period.
          ONE Zinc when I take my iron, but I should probably take one a day, or every other day.
          TWO Sundown Prebiotic every day(ish).
          TWO Sundown Probiotic every day(ish).
          ONE Cod Liver Oil pill or 1 TEASPOON Cod Liver Oil in the bottle a day.
          ONE pill Jet Alert when I need energy — sometimes none, sometimes 4x a day.

          It’s 4 1/2 years since I first started taking B12, and about 3 years since I started the other supplements, and I noticed a few weeks ago that I am starting to feel like my old self again! I still get super tired super fast, and I do still have a real problem with mucus, but I feel pretty good! I don’t feel overwhelmed by the smallest thing, I feel a lot more lighthearted again, and I have my balance back — another symptom was that I kept walking into walls.

          Hope this helps.

        • Leslie says

          MJ-
          I get b 12 injections every 2 weeks. You can tell when I need them–I get, let’s say-cranky. I can’t find my words, constant headache, unsteady, nauseous, over-tired etc. If I go too long I start to get the numb tingling in my face and limbs. To answer your question–I feel better immediately after my shot. Makes my jaw drop. My Father-in-law was the same way. I don’t know how you go from one extreme to the other- but I tried the supplement pills and the sub-lingual liquid…nothing works like the shots. My underlying cause is pernicious anemia if that applies to you.

    • AnnF says

      Dawn,
      I just saw on Doctor Oz PCOS — poly cystic ovarian syndrome (I think syndrome).
      So, take B12, but it’s one more thing to check out.

  30. Lisa says

    I have recently been diagnosed with ME/CFS. My b12 level is 268 which is in normal range, however I believe if I was given b12 injections my symptoms would improve. But I am having trouble getting the doctor to listen to me. I am thinking of getting a second opinion and getting further tests done. Listening and reading other peoples stories b12 does seem to be a miracle in helping people rid or easing the symptoms

    • Tracy says

      Go get a second opinion. You may want to try a naturopathic doctor, they seem to be much more aware of B12 and gluten issues.

      You can always supplement B12 yourself. Amazon has sublinguals and mouth spray. Cyanocobalamin, the form most US doctors usually administer, is the worst option as the body has to convert it to a usable form and rid itself of the cyanide. Hydroxocobalamin (used in the UK) or methylcobalamin are much better. You can find injectable methylcobalamin over the internet, I did and from a YouTube video learned how to inject myself subcutaneously. I have pernicious anemia so sublingual B12 doesn’t work very well.

  31. Jen Garrett says

    Thank you so much for this forum! In the last two years, I have experienced worsening tingling in my legs, arms, and just recently around my lips. I had blood work done and my b12 is low, but still in the range. I’m a vegetarian of 5 years, but I still eat cheese on a daily basis. I thought that would provide the b12 I needed. When I became a vegetarian, the books advised b12 supplements but I had no idea that a deficiency could have such lasting effects. What’s the best way to reverse all this? I’m really concerned now about lasting nerve damage. What’s the best route – is a supplement sufficient or should I ask my doctor for shots? She didn’t suggest anything because my levels were still in the acceptable range. Thank you!

  32. karen biers says

    My B12 is under 100. Four months ago I was getting shots and it was at 1500. Four months later its under 100 and Im so weak, dizzy, muscle pains, cant think, overly moody when Im not a moody person. All I want to do is cry because NO one will help me. What do I do next? Please I beg for help

    • Someone who knows says

      Hi, Karen,

      I used to have many of the symptoms you describe too, before I took charge of my health and started taking B12 supplement daily. I feel MILES better now that I’ve been taking it daily for some time.

      You can buy it on Amazon.com:
      http://www.amazon.com/Jarrow-Formulas-Methylcobalamin-5000mcg-Lozenges/dp/B0013OQGO6

      This is the brand I use and it works great, though I’m sure any brand offering the same ingredients would work equally well.

    • Tracy says

      Karen, have you been tested for pernicious anemia?

      If you have PA then oral supplements won’t work very well as you have antibodies to intrinsic factor in your gut which is what absorbs the B12 from your food and transports it to where it is needed in your GI system.

      With PA you will need B12 supplemented for life (usually by injection but there is a nasal spray available). Pay attention to the kind of B12, cyanocobalamin is readily available in the US but considered inferior as the body needs to convert it to a usable form and flush out the cyanide.

      With your B12 so low, you can get serious neurological damage. My B12 was 196 and even at that level I could hardly walk. I had terrible sciatic pain and pain in my feet for months before finally diagnosed with a B12 deficiency. Then I tested positive for PA.

  33. Pam says

    I am have been veggie for years and always had normal Blood results, until recently, my latest tests show B12 deficiency. Nothing changed in my diet, i guess I just finally depleted my reserves.

    • AnnF says

      Hi Sacha,

      I have never heard of a B12 deficiency causing weight loss, only the opposite. Though it’s possible I suppose.

      One friend of mine started losing weight rapidly, and it turned out she had diabetes. Another friend of mine had an overactive thyroid that caused her weight loss. I would see my doctor and ask about those two as well as any other thing he could think of that would cause unexplained weight loss. However, it also wouldn’t hurt any if you took B12.

    • Tracy says

      Yes I think for some B12D can cause weight loss. You may not have sufficient stomach acid, which aids in digestion. Then you could have malabsorption of nutrients from your food.

      I lost 15 lbs. over several months and I was quite thin to start with (my BMI is currently 19, low for a woman). Not sure whether it was my Paleo diet which is pretty lean in starches, or my deficiency (I have pernicious anemia), or both. Still struggling to gain some of it back. I don’t tolerate fat well, a higher fat diet makes me feel horrible.

      • Roy says

        Hi Tracy,
        Do you know if you have hypothyroidism as well as the PA, or have you not been checked?. There is quite a bit of evidence to suggest that hypoT may precede PA in some cases.

        • Tracy says

          Hi Roy,

          I certainly had hypothyroid symptoms (severe insomnia, night sweats, weight loss) but my lab tests never showed TSH to be out of normal range. My endocrinologist did not run any other thyroid tests (T3, etc.). When I was so very ill it felt like my thyroid was fluctuating between hypoT and hyperT but never could catch it in the labs. And docs in the US won’t treat thyroid based on symptoms alone. Part of my treatment has been acupuncture, the actupuncturist said those symptoms were classic PA where red blood cells becoming enlarged (mine are currently at the top of the normal range in size).

          I recently learned I also have erythromelalgia (feet turn red at night, are very hypersensitive) and hypohidrosis (I don’t sweat much, real danger of heat exhaustion). So maybe some of my symptoms were related to that.

          • Roy says

            That would seem to be a problem. There are many steps between the secretion of thyroid hormone and making active B2 as FAD/FMN, one of which of course is the iodination to make T3/T4, which requires dietary iodine (hard to get naturally without seafood), selenium (which is low in many areas), then of course there is dietary B2, which is hard to get enough of if you don’t eat dairy. You would be surprised at how many “euthyroid” people come up as functionally B2 deficient.

          • divya says

            Hi tracy
            My problem is also similar to yours. When i had b12 deficiency last year i had unexplained weight loss. This time also from the past 2 months my weight is decreasing along with some other symptoms. Did you get any solution now?

  34. Bobbie Anderson says

    Hi, I had the MTHFR test done and i am not sure what i need to be taking. I have two mutations. C677t and A1298c. My doctor have me a cream but i dont think it is working too well. What other things could i try. Thanks!!

  35. JJohn says

    I had to ask my primary care to include testing for homocysteine in the course of a routine exam and blood workup (age 64) and he wanted to know why I wanted it. It turned out my homoscysteine level was 20 (which I think is dangerously high) and I immediately switched some of the B12 folic acid supplement to a folate 5- methyltetrahydrofolic acid alternative. When I had first started taking B12 years ago my urine turned quite pungent and strong. I didn’t notice over the years that to have changed. As soon as I started the folate, the strong pungent urine returned…… which I take to be an indication that the folate is doing its job. I have a retest coming up and will be waiting to see that verified.

  36. Tamara Harrison says

    Hi Everyone, I had gastric bypass Oct 2014 after surgery I started getting weekly B12 injections and soon as I get the injection I start to feel like in having a allergic reaction to it. I loose my voice, my throat gets tight and I loose my train of thought. I’ve had food allergies my whole life this is the same type of symptoms I get when I have a allergie to food. Has anyone ever heard of someone being allergic to a b12 shot? Oh and I receive mine from a natural path and I use a vitamin B 12 with methyl.

    • Tanya says

      I got the shots at first when my B-12 was low. Yes, I also had some kind of allergic reaction after my 3rd shot. My chest and neck got a large red rash all over my skin. Looked like I had been in the sun way to long. Told my Endo and he stopped the shots and put me on B-12 1000 mcg sublingual. I’ve been on this for almost two years now. Just had my B-12 checked and it was high so they are having me to take 1 every other day or 500 mcg daily. I’m also taking D3-5000 IU daily. Doc will see me again in June.

  37. bukhtiar says

    I am male 37 year old
    I am use cholesterol medicine.
    Imy vitamin d level 28.
    b 12 level 128.
    use injection last 2 week.
    I a have pain chest tightness every time.
    heart palpation.

    any experience pls share
    regards

    Bukky

    • Stella says

      Bukky – you need to take a potassium supplement until your body has built up its B12 reserves. Correcting B12 anemia temporarily drains your own potassium reserves.

      Same thing happened to me, palpitations and chest pain. Once I started taking potassium the pains went, and I was able to stop taking it once the B12 levels had got up to normal. I used a soluble potassium “Sando-K”

      Your doctor should know about this.

      Hope this helps.

    • Amy B says

      Start taking Vitamin C (Food Based like Rose Hip or Camu powder or the one by MegaFood) to help the absorption and to increase levels of B12. Usually Vitamin C deficiency is the cause of low B12.

  38. Diana says

    I’m wondering that since Chris says there are no vegetarian forms of B12, why do some methylcobalamin supplements say “suitable for vegans”. I’ve tried unsuccessfully to find out how B12 supplements are made. Someone online mentions that they are made from bacteria, and that the only reason animals have this in their gut is because they eat the plants that have the bacteria on them. Ultimately I need a methylcobalamin supplement, but want to make sure I’m taking one derived from the right source?

    • Laurie Getchell says

      I have been vegan for over 4 years and vegetarian for over 10 years and I am not deficient in b12. i am also currently pregnant, so my b12 needs are higher. I take a vegan methylcobalamin spray once a day and my most recent blood test showed my b12 to be in perfect range. The methylcobalamin spray I take is from Garden Of Life, Kind Organics (certified vegan) and is produced from Saccharomyces cerevisiae ( a food yeast grown on molasses solution). I am living proof that Vegan b12 exists and this article is BS, meat eating propoganda. We have 0 nutritional requirements for animal flesh or their secretions. period.

      • David I says

        I believe that Chris was talking about FOOD sources of B12–and he is right.

        I’m not sure exactly why you are taking such a nasty tone. I don’t consider this to be ‘meat-eating propaganda,’ I consider this to be factual. The supplement you are taking is industrially produced, and is not ‘food.’

        Incidentally, I’ve been a vegetarian since 1969, so I’m not exactly a tool of the meat industry.

        • Roy says

          I agree with David. I always find it curious that a supposedly “normal vegetarian or vegan” life-style is in fact one highly supplemented with B12. You may be surprised at what they feed the yeast or bacteria that they use to make the B12. Normally the amino acid supply comes from acid hydrolysed casein, which is obviously a milk product from cows, so it is hardly Vegan. I would also be very careful of assuming that your B12 levels are “normal”. What you are measuring in serum is what you put into serum, and in your case it was methyl B12. This does not necessarily correlate with what is in your cells, where you need both methyl and adenosyl form of B12.

          • Cathy says

            OK David and Roy, please tell me then – why, after being vegan for 20 years do I have a normal B12 level along with a normal blood cell count and full blood work up?

            I have been tested various times over the 20 years, and there is no variation from when I was a massive meat and dairy eater. Why? After seeing these kind of articles this shouldn’t be the case, but it is. I am wondering what the real cause of B12 deficiency is, and whether it actually has anything to do with being vegan or not.

            I heard that humans used to be able to produce B12 in their gut like other animals, but somehow lost the ability. Maybe that is not a universal truth. I’m not saying to ignore the issue. I think people need to pay more attention to their B12 levels. I’m just asking you to check your rhetoric and tell me why I don’t have a B12 deficiency.

            • Becky says

              Cathy, I’m happy for you in that you are healthy and have good B12 levels, albeit having to supplement.

              What I find frustrating is your apparent superiority because you don’t eat meat. This is a choice and as far as I am aware always is rather than your bodies intolerance. Unlike many including my daughter who has Fructose intolerance (the sugar in fruit and veg, also no gluten, wheat, or spices), without eating meat she would live on potatoes and rice and would probably not survive long (also has cfs due to above plus vitamin deficiency). It’s great that you’re healthy and able to make a lifestyle ‘choice’, but others aren’t so fortunate.

        • says

          Great response. I have in my life been all over the board. 16 years vegetarian many on and off years as vegan. I’m often anemic and b12 deficient. Started getting chronic uticarea( hives), but no one ever diagnosed it to be related to the b12. Currently I’m having like mental fog and constant headaches and haven’t been taking supplements for a long time. I’m only about 80% vegan if there is such a thing. Any recommendations on the right form of B 12 that I could get from Amazon that would help me right away? Thanks

      • Jo says

        Laurie, a vitamin b12 deficiency is an insidious condition and you have stores of the vitamin in your liver, estimated to last 2-4 years so it will take several years to become deficient but it will happen, your body can not survive without b12, it’s vital, so please don’t believe that this article is BS, because it’s not. You are correct when you say that your unborn baby will be drawing on your nutrients and I am happy to read that you are supplementing. Please continue to do so and if you are intending on your child following a vegan diet then it is paramount that you supplement your child too because during their years of growth and brain development, vitamin b12 is essential. Trust me when I say that having irreversible neurological damage from an undiagnosed vitamin b12 deficiency, is the last thing that you would want.

  39. Krista says

    I have MTHFR polymorphism. I just found out that my B12 is very low. I know from reading Dr. Ben Lynch’s website that I need to be careful with methylfolate but does that include being careful with methyl B12? I need B12 injections and not sure whether to take the methyl B-12 my doc wants me to use (which has methylfolate included) or ask for hydroxocobalamin. I am already having severe neurological symptoms. Any ideas? Thanks.

    • Tanya says

      Do you see a Endocrinologist? This type of doctor deals with these kind of chemical problems in the body. A Endocrinologist will test your B-12, folate, thyroid function, Vitamin D, with a few other test. My family doctor has never tested my B-12 or my vitamin d. I’ve had long term symptoms and was being treated but medication never helped. I had depression, crying spells, body aches/spasms, fatigue, mild seizures, memory loss. The family doctor stated he thought with all of these symptoms, i was bipolar. The word depression … So off i go to see a doctor for depression and this guy orders new lab work and he never checks my b-12 or my vitamin d level! I ended up in the ER after passing out in the shower. The ER tested me for B 12 deficiency and told me to get to an Endo first thing the next morning. I started out with B-12 injections for a few months to get my level back into a normal range. Then I changed over to 1000mg B12 sublingual once a day. Also, When your b-12 is low it effects your thyroid levels, they correlate together.
      I know methylcobalamin treats the neurological symptoms and occurs naturally in the body. When you start the shots it can take a few months before you start feeling better. If you’re seeing an Endocrinologist he will know the best treatment for you based on your test results.

      • finndian says

        I’ve been to many, many endocrinologists and not one did any type of nutritional testing. No, I find if you have B12 deficient tingling feet and go to the average endocrinologist you get put on Lyrica. Your endo is very unique. If the nutritional tests he gives you are serum testing instead of red blood cell tests I would find a more knowledgable alternative doctor.

        California recently passed a bill making it mandatory that its medical schools require substantial nutritional training… first state in the union to require it. Right now future doctors have minimal training in nutrition and can opt out of it.

        “On average, (medical) students received 23.9 contact hours of nutrition instruction during medical school”

        http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430660/

        • Tanya says

          A good Endocrinologist does more than just a CBC or give you a prescription telling you to try it and see if it helps your symptoms. They do Metabolic profile, Amino Acids, A1C, etc. These are the chemicals your body needs to sustain life. Tingling feet? I never had that with B-12 or vitamin D deficiency. I do know a few people that are diabetic and they complain of tingling feet. They’re also being treated with Lyrica.
          I have been with the same endocrinologist for 22 years. You couldn’t pay me to see his assistants, much less a different endocrinologist. No matter what your medical situation maybe, he talks about weight and nutrition with all of his patients.

          • Mike says

            I am a PA working for an Internal Medicine practice and I routinely check patients for their Vit B12, Vit D, etc. I must agree that during my schooling I received very little nutrition education. I have learned a lot from this and other sites.

            Not all PAs are the same. You could always tell your physician what it is you like about him/her and why you don’t want to see their assistants. They may have one that has a similar thought process they would recommend to you should the physician not be available.

      • Tracy says

        I had foot surgery late last summer for pain I’d had for well over a year, which was diagnosed as a neuroma (swollen nerve). A couple weeks post surgery, I started having major problems (horrible insomnia, surgery foot just didn’t feel right, felt depressed, had terrible pains in my legs and feet, heart palpitations, fatigue). My PCP referred me to an endocrinologist who had me get a whole battery of tests. But she NEVER ordered a B12 test (or vitamin D test for that matter). My cortisol was a little higher than normal, but that’s about all she found.

        My PCP then decided I needed an antidepressant, Lexapro. That made me feel just awful and it was causing me vision problems, so I quit taking it after a week. Fast forward two months later, I was using a walker to get around and was seriously feeling like I wasn’t going live to see the New Year. No one at my HMO could figure out what was wrong with me, nor did they care. About every couple of weeks I would make an appointment to see my doctore and ask for yet another set of tests, hoping to figure out what was going on with me.

        Finally in late Oct a doctor who was substituting for my regular physician for that day ordered a B12 test, which was found to be 196. My PCP said it was so close to the low cutoff of 200 that he didn’t think it was significant. Since by then it was the ONLY test that appeared abnormal, I did some internet research and learned my symptoms matched many of those for B12 deficiency. I then insisted he begin treating me for B12 deficiency. Another blood test later on determined I had pernicious anemia.

        It’s now 5 months after I began treatment and am still recovering from neurological symptoms and may have permanent nerve damage to my feet. As yet I am unable to to work (I was an engineer and lost my job since I’ve been out since Aug) and have difficulty walking due to pain in my feet.

        I am so angry with the medical system for 1) not catching this simple vitamin deficiency, 2) using a low cutoff of 200 which is WAY TOO LOW, and 3) doing a poor job of helping me manage my treatment (cyanocobalamin worked for me at the beginning but now makes me very sick for about a day after I get a shot and I have had to find alternatives on my own as the HMO formulary only has cyanocobalamin).

          • Tracy says

            Lisa,

            Yes I am still having symptoms and I would like to talk to you too. How do you suggest we connect? There isn’t a private message capability on this site. I am a member of the Pernicious Anemia facebook group so you could find me there.

  40. Ghadir says

    Hello!
    I am experiencing symptoms that are exactly associated with B12 deficiency.
    I have numbness in my legs and feet, twitching/spasms in muscles and a finger, memory loss, loss of concentration and hairloss. I do have a lot of dairy in my diet and i do eat red meat. Which doctor should i go to for these symptoms ?

    • jr says

      i just was told by my ”stroke Dr.” that my b-12 and vitamin d is serverly low and i have to take injections .i had 2 strokes 2 yrsa ago and have had alot of mental and physical problems.but finally 2 months ago i can walk without a cane or worrying when i will tumble.i was early fifties when i had my stroke just lost alot weight the right way and walking 3 miles a day then it hit me .so i am concerned about the supplements because i take my blood thinners .i was also told i had corti basal degenration diease.the stroke damaged 2 parts of my brain memory short term the other i do not know.could being low in these vitamins cause the symtoms

  41. Yvonne says

    I am new to all this although I have suffered with constant pain for a lot of years now And I think now that I have been mis diagnosed I have ostio arthritis in a lot of my joints I have had both hips and one of my shoulders replaced also my knees are bad and now my feet more left than right has started with very serious pain my hands are now very swollen and my fingers are quite bent now so sore some days it’s just like toothache the swelling is round all my knuckles as well .I also have depression which seems to never go away I cry and get very emotional all the time .this has gone on for years. I take mess for depression,my stomache(gallbladder has been removed due to stones and pain) Flicky legs and arms pain patches and paracetamol and trampoline I get what I can only describe as electric shocks in feet and hands .my hands also go in to spasms and lock very painful when this happens . I was very obese .But I had a gastric bypass in 2010 and that’s when they discovered my B12 was low and I was started on B12 injections at first 3 monthly then and and now every 8 weeks ( and for a few days I do feel more myself .) I do have fatigue were I will just go to sleep can’t stop it and then most nights don’t sleep tired but can’t sleep. The pain is the worse thing it’s all over my body my joints,muscles in my legs and arms and although they have replaced joint I still get pian in them .Anyway I am know thinking that all this may well be caused by the B12 not being right I have seen lots of doctors for all the different thing but never for all of the symptoms together They all seem to latch on to the depression. But I get tearful every time I see a doctor it’s like banging my head against a wall .I have had this (depression) for years or have I ? Sorry for the long post but I am at the end of my tether P.S I am now being sent to see a rumatoligist but they say I don’t have that .

    • AnnF says

      Hi Yvonne,
      Gastric bypass? If you weren’t deficirnt B12, you are now. Better to be at a healthy weight, though, and then deal with anything that comes up!

      Besides B12, first, try to eliminate problems with your thyroid, pituitary, and any other endocrine gland you have. Second, I’ve been reading about the problems an overgrowth of Candida (the yeast in your body naturally) can do, so have that checked out. I know this is weird, but if you can, get your heart checked for holes. It’s always in the back of my head, because every once in a while, I hear a story of someone who had seemingly unrelated symptoms, until doctors found a “pinhole” in the patients heart, and once it was fixed, the person’s various symptoms disappeared.

      B12 deficiency can cause all kinds of problems, unfortunately, bringing your levels up to normal doesn’t help fix what it helped break, but it will help you to feel better, and stop any more problems from occurring. If you can’t increase the frequency of your shots, at least take B12 supplements in between. Make sure you also take Magnesium, Zinc, Potassium ( but watch the levels), and B complex with Folic acid. In order to absorb vitamins, even the water soluble ones, you need to take them with some kind of fat — if you are not lactose intolerant, regular homogenized milk with the red cap will do. Plus, if you take them with food or milk, they usually don’t cause nausea. I know from experience, that some brands/forms of vitamins will give you GAS! If you take them at least 12 hours before you go out, you should be o.k.. If it doesn’t let up after a month, try another brand or form of a particular vitamin, like, oh, say, if supposedly easy-to-absorb Magnesium Citrate gives you so much gas you offend a skunk, then switch to Phillips’.

      Fats are more important to your diet than modern medicine would like to admit. I know you are counting calories (understatement, right?), but if you can, add 2 tablespoons of olive oil, avacado oil or grapeseed oil to your diet. If you take the oil straight up, you will need to take a half a slice of bread right after in order to stop it from repeating on you.

      A lot of people are claiming miracles after they take Turmeric pills for joint pain. Please, try drinking chamomile or Sleepytime tea 3 times a day for two weeks, and see if it doesn’t help ease your mind, help a little with that depression, and help you sleep. Two things I realized when I had trouble falling asleep or falling into a deep sleep: even though I felt warm enough, once I put on an extra blanket, I fell right to sleep, and, if I had a collar on my pajamas, I was a lot more likely to have trouble sleeping than if I had no collar. Which leads me to add, always block the light from stereos, cable boxes, alarm clocks, etc., and always wear 100% cotton to bed.

      Lastly, try daily Yoga and meditation.

      I hope this can help, even a little.

    • tnt3266 says

      Hey Yvonne,
      I found this on the web today .. Your diet after gastric bypass surgery!
      After gastric bypass surgery, your body will not absorb some important vitamins and minerals. You will need to take these vitamins and minerals for the rest of your life:

      Multivitamin with iron
      Vitamin B 12
      Calcium (1,200 mg per day) and vitamin D. Your body can absorb only about 500 mg of calcium at a time. Divide your calcium into 2 or 3 doses during the day. Calcium must be taken in the “citrate” form.
      You may need to take other supplements also.

      You will need to have regular checkups with your doctor to keep track of your weight and to make sure you are eating well. These visits are a good time to talk with your doctor about any problems you are having with your diet, or about other issues related to your recovery.
      I hope this helps you too.

    • michael says

      Your symptoms identical to mine re pain and electric shock feelings. Living in Australia was put on antidepressants. Moved to UK where a specialist took 5 mins to diagnose Fybromyalgia. An Aussie doctor I emailed said “that doesn’t exist” although the UK specialist gave me a whole book on living with and managing it produced by arthritis UK. A UK eye specialist (elderly lady) echoed that it didn’t exist but my heart surgeon, cardiologist and gastroenterologist say it does exist and is diagnosed via clinical observation rather than a blood test. Existing or not I am getting on top of it and it is months since I had a bad day. You will tell from the number of specialists I see that I have a lot of health issues but my local doctor (she is young and very on the ball) guides me constantly with nutrition etc and slowly we are unravelling the mess of issues and improving my life. You too may have many intertwining conditions but keep up the search. Incidentally, the book I mentioned is available online from Arthritis UK. Best wishes. Michael.

    • jen linda says

      It sounds like you have food allergies. I used to wake up with tingling arms, swollen hands and bloating off and on. I went to Center for Advanced Med. and they took me off Night Shades (tomatoes, potatoes, peppers) b/c I could not digest them. They are very acidic. Also, my intestinal bloating went away when I went gluten/dairy free(couldn’t digest the milk protein, cassein. I would get heart palpitations too, but this got better at first with some extra potassium and cal/magnesium. I suggest you do a ten day elimination diet, w/ doc’s approval. You can do bone broth every day with green veggies. You may feel worse the first few days, but by day 7 or 8 you should feel better.

  42. gg2493 says

    i was diagnosed with vit b12 deficiency when i was 18.
    had continuous pain in my left wrist and left calf.
    when i take the injection the pain goes away and comes back in 5 days.
    have taken more than 30 2 ml injections.
    still there is no relief

    • gg2493 says

      also i forgot to mention that i feel tingling sensation in my right thigh and upper left back.
      my knees get cold very quickly.
      my b12 level in 2012 was 180 and after 30 injections in 2 yrs it is 230 .
      i am from india.
      and a strict vegetarian.
      should i take any other vitamins for efficient absorption of B12????
      any tips ??

      • AnnF says

        First, I have to say, that although many people do well being vegetarians, once you know you have vitamin defifiencies, particularly B12, you might want to think about eating meat. I am convinced that the best thing is to eat soups and stews, particularly ones that use blood and bone as well as meat, because so many nutrients depend on one another for absorbtion. This is more like do as I say, not as I do — my own diet is HORRIBLE! No stews, and I don’t suppose you would call instant Ramen soup.

        More to the point, if you only feel the effects of your injections for 5 days, you really should have them once a week. You will have to take B12 for the rest of your life, sorry. Unless, of course, you start eating meat and your levels shoot up. Even then, I would still recommend taking a tablet once a day.

        I take the B12 you can dissolve under your tongue (3 a day for 15,000 micrograms) but somebody here mentioned the B12 oils which are supposed to be better absorbed.

        Make sure you take other vitamins, such as Magnesium, Zinc, and Folic Acid as well.

        Good Luck!

        • gg2493 says

          thanks a lot.
          can you help me with self injecting vit B12.
          the amount of the liquid and the ideal place for injecting?
          any precautions i should take?
          and also the procedure?

          • AnnF says

            I have never taken the injections, so I have no idea. Others here might write back about that. In the meantime, try YouTube. It always surprises me howmuch different info they have on there.
            I was just thinking, with the cold knees, you might be deficient in iron as well. I know the one from animals is better absorbed, but I haven’t had any problems with the regular ferrous sulfate. Just take it with vitamin C and zinc.

  43. Donna says

    I have Hashimotos Thyroiditis and severe Graves eye disease. My labs just came back and my B12 was 299pg/ml. After reading this article I an assuming that is low. What type of B12 would you recommend to enhance my levels…

  44. yadab poudel says

    HI, I found this site very helpful for me. Since last 10 years I have been feeling very tried, always feel sleepy, can’t getup from bed in morning. I did lots of tests and couldn’t find any thing.poor apatite, always looks like lazy. I was scared about this.Last year I came USA and I went to the hospital and it is identified as vitamin B12 deficiency. My B12 level was only 98. Since then, I took shot every week for one month and once a month for next four month. I am very new to USA. I don’t know the treatment process here. I had Free insurance in New York. Now I moved Texas due to my work and stopped getting shots and started getting oral supplement ( 1000 MCG Daily) I still feel fell same pain and tried. Because of this continuous pain (specially in the feet) I couldn’t sleep properly for couple of days and had to visit even mental doctor. Now I am also having sleeping pills as prescribed by the doctor. Can anybody please help me how long does it take to have effect of injection/ Tablet of vitamin b12. How long does it take to get well . How dangerous deficiency is. I am new immigrant here. I am scared lot regarding my health as I need to do physical work for long hour even for my survival. I am mentally also disturbed because of this problem. My age is 30. I am sorry for my bad English

    • sunshine 92 says

      I’ve been doing a lot of research recently, and most of us cannot absorb b12 from pill form. Go get regular injections in a local clinic. Should be around $35 per shot.

      • yadab says

        Thank you so much for your information. If I again start getting injection normally how long does it take to feel better.

        • Rudy says

          Part II Yadab. Sorry I disconnected by mistake. I went to HEB and bought Nature’s Bounty Vitamin B12 Quick Dissolve Methylcobalamin 1000 mcg. My doctor told me this is the BEST. It is “sublingual”, which means you put it under your tongue and let it dissolve. It is a small pink pill and dissolves very quickly.

          From reading my google sites, I have also started eating red meat again (grass feed cows), eggs (free roaming non-caged), beef liver, natural salmon, tuna, scallops (not farm bred), and organic milk. Two weeks ago, Dec 8, 2014, my doctor ordered another blood test and my Vitamin B12 is now 650 (from 320 in Aug 2014).

          I am feeling so much better. The semester is over and I can now run and exercise without too much pain. It takes time. I still feel tired and my energy is not 100% for running , exercising – but I feel is is 75% from one year ago. I will continue my B12 vitamin and good diet (meat, eggs, fish, milk, cheese – all natural, organic). My next B12 blood test will be in Mar 2014 – but I feel much better now.

          Your culture may be vegan/vegetarian, and that will be a problem if you can’t change that (B12 deficiency is major in vegan countries). In that case, maybe two B12, 1000 micrograms a day would be ok. My doctor told me two vitamins a day is ok during treatment because our bodies need it at this point and it can’t harm.

          Note: there is nothing else wrong with my health according to the tests, just a major diet change with no V-B12. Hope this helps.

          • AnnF says

            Rudy,
            Check your vitamin bottle. I’m pretty sure that Nature’s Bounty is Cyano, not methyl. If it’s working for you, fine, but I try to avoid cyanide, even when small, because a lot of things have it in, and it builds up. I use Natural Factors.
            I found out I needed Magnesium as well. I thought I was getting enough through my diet, but I wasn’t, so I think everyone should take Magnesium as well. Just be prepared, some of them give you GAS.

            • Eric says

              As I recall (from the shelves at my own H-E-B–like Rudy, I’m an Austinite), Nature’s Bounty actually sells *both* forms, presumably for the simple reason that there’s a market for both. (The one virtue of cyanocobalamin is it’s cheaper to synthesize, but the bioavailability frankly cancels that out.)

          • Bec says

            A B12 level below 100 is a severe deficiency and I would not recommend taking sublingual in preference to injections. Even though sublingual bypasses the stomach absorption, you are still only getting small amounts of B12 – certainly not enough to treat a severe deficiency. Please find a doctor who will administer the shots again – once you start injections, you should be on them for life.

      • David I says

        If you have been doing a lot of research, perhaps you should check out the Cochrane Reviews. The general conclusion from carefully controlled and reviewed studies is that oral administration CAN work as well as injection.

    • Rudy says

      Hi Yadab,

      I am from Austin, Texas, and also in treatment for Vitamin B-12 deficiency. I hope I can help you – there is hope. I am male and was always active in sport and good, health food, and vitamins. In Jan 2012 I started studying at college and working full time every semester. My diet changed – I became a vegan/vegetarian – no red meat, eggs, fish, cheese, milk. I ate lots of salads and chicken, turkey. Working so much and studying – I often ate from cans and junk food. I also stopped my vitamins.

      Last year, I started to feel sharp pains in both my legs and feet. Like pins and needles. In fact, they felt like they were on fire. I also felt nerve sensations in my lower back – I could feel electric currents in my lower spine. I was so scared.

      I could not walk very well either. I would lose my balance when walking, and always the “fire” in my legs and feet. Many times my feet and legs would jerk because of the electric current. I would become so tired and could not work in gym or run (I would just lose my energy).

      In Aug 2014 I FINALLY went to my doctor of many years and told him. He did exams on me, and had me walk for him, and I lost my balance. I told him my history and he did a blood exam. I found out my B-12 was at 320 (normal is between 1000 – 1100 !!). In American, doctors still think levels are at danger below 250. In Europe, the danger level is below 500. I really thought I was going to be paralyzed and never walk again.

      He was a smart doctor. He did not want to give me injections. He started me with 1000 micrograms of B-12 Methylcobalamin right away.

      • Cathy says

        If you ate chicken and turkey, you were not a vegetarian/vegan, because chicken and turkey are meat, and vegetarians and vegans do not eat any form of meat. Seafood is also meat, so if a person eats seafood they are not a vegetarian.

        You are still classified as a vegetarian if you eat dairy and eggs, but vegans do not eat dairy and eggs. If you are a vegetarian for ethical reasons, an ethical vegetarian, then I can’t see how such a person could justify still eating eggs, since ALL hatcheries, cruelly kill all of the male chicks, including hatcheries sourced by free range egg farms.

        Hatcheries have been caught suffocating the chicks crammed in large plastic bags and then just tossing them like that in the dumpster because it’s too much trouble and cost to bother gassing them, which is also hideously cruel and vile.

    • AnnF says

      Hi Yadab,
      I started taking FOUR 5,000mcg pills a day, so 20,000 mcg a day, and it was about 2 weeks before me feet and legs stopped hurting. I started with Cyanocobalamin, and have now switched to Methylcobalamin. I took the four pills for 2 years, then went down to one pill, but have had to go back to taking two a day. someone here writes about the oils, but I haven’t tried them yet.
      Try taking Calms Forte by Hyland in order to help you sleep. It’s an all-natural pill. It used to be better, but it’s still o.k., or simply try chamomile or Sleepytime tea — you’d be surprised how well they work.
      Be careful of any kind of prescriptions you are taking. I took one form of Blood Pressure pill, and noticed that I was jittery, depressed and paranoid, so I switched pill type right away.

    • Angela says

      You may want to either check your vitamin D or just get some subligual vitamin D at least 2000IU, I take 5000iu.. Vitamin B12 and V. D kind of go together.. if your deficient in B12 and D, taking just one of those isn’t going to help you.. If someone is deficient in Vit. D then they will always be deficient in B12 and Vice Versa.. usually not always of course.. Getting out in the sun isn’t always going to work either.. if you came from a Country where people work outdoors and it’s always sunny and you come here to the US.. you will surely be missing your usual Vt. D (which is actually a hormone by the way, and once it is low then all your other hormones get thrown off).. I bought myself a Sperti Vt. D sunlamp and take Vit. D by LA Naturals.. it’s the best I have found..highly absorbable.. good luck

    • Cathy says

      Yadab, I agree with sunshine. If you have an absorption problem, you will need the injections, and you will need to monitor the B12 levels with regular testing.

      Your feet might be hurting if you are working on your feet every day and constantly lifting things without a shock absorbing mat to stand on and/or without proper footwear. In this situation you can develop some kind of bone spur and even small fracturing of the bone. I had this happen to me and I had to do really firm massaging to the area on the bottom of my feet that were hurting, and switched to footwear with air cushioned soles that solved the problem, because I didn’t have mats to stand on at work. Target and K-mart usually sell air cushioned sneakers really cheap if you can wear sneakers to work, otherwise a shoe with a lot of cushioning in the sole, and you can add sports insoles too, which I add to all my shoes for shock absorption to prevent foot pain.

      Also, in your situation, you may need a good general vitamin and mineral supplement to support your functioning because of the extra demand that your work schedule is having on your body’s entire system, which could even be contributing to the problem of absorbing B12. You don’t need an expensive vitamin and mineral supplement, just a good broad spectrum one that has everything in it.

      Lastly, if you haven’t already, I urge you to get your thyroid gland functioning checked. My aunt and mother both had hypothyroidism (underactive thyroid) and it was a downhill slide of fatigue and tiredness that ended up with not being able to get out of bed. Of course fatigue and tiredness are symptoms that mimic symptoms of a whole range of things, but thyroid malfunction should be tested for. I hope things improve for you.

  45. says

    excellent article, Vitamin B like Vitamin D has numerous powerful effects on the body. Women are especially vulnerable to vitamin B deficiency. You can find supplement give away’s at supplementadvisor.org However eating foods high in vitamin B is also helpful (liver, fish, fortified cereals)

  46. Laura says

    I’ve had B12 deficiency since my teenage years. My mainstream doctors would give me B12 injections, get my levels back and then stop giving injections. Since seeing my Naturopath in June, I’ve been diagnosed with pernicious anemia. My levels were below 200 (187 in fact) and I was having serious neurological symptoms … many of the ones mentioned in this article. I started off receiving weekly shots of methylcobalamin. I’m now getting them once every 3 weeks and the majority of the neurological symptoms are gone now. My insomnia and anxiety are almost completely gone now … it’s amazing how much a deficiency can affect.

  47. Frank says

    Please help! My wife started having seizures a few years ago that present as grand mal seizures, but she is totally awake and can communicate. She has had every test you can think of. Recently, we were working with a neurologist and a rheumatologist and found out her b12 levels were insanely low and that that could possibly be the reason for the “seizures”. She started with sublingual b12, because the rheumatologist suspected that she was not processing the b12 inher intestines. Her levels did not improve. We started injections and they seemed to work at first but slowly the results diminished, with the only result be back acne. She was re tested and her levels were 83l…nmol/L. I don’t know how to read that! All of her other results were in pg/ml and she was at 186 then. She is in constant pain-nerve, muscular and joint. The rheumatologist just informed us that there’s nothing else she can do that we need to see the neurologist. My wife is done, she is so upset and depressed she is suicidal. I do not know what to do. She does not want to waste any more time with another doctor or waste our time and money. If anyone knows anything or can help I would be eternally in your debt!

    • Madge says

      Hi Frank, it sounds like the rheumatologist was part of your solution. Chronic inflammation such as in rheumatoid arthritis eventually leads to B12 deficiency, which can explain the symptoms. Once you are deficient, oral or sub-linguals are not really a very good option. If she hasn’t responded to the B12 injections, it was probably because it was cyanocobalamin, not methyl/adenosyl cobalamin. Many people can’t process cyanocobalamin (a pro-vitamin) into the two active forms adenosyl and methyl cobalamin. Now the problem is that after the injections, she will show up as having very high levels of B12 in her blood. This is a real reading, however, the B12 will be the B12 that was injected. Thus, if it is cyanocobalamin, what you measure in serum will also be cyanocobalamin, not the active adenosyl and methyl cobalamin. The next problem is that if she can’t actually process the cyanocobalamin you will have to wait until the levels drop until she gets the proper Adenosyl/methyl B12 (cobalamin). As she was so low, she will need months of daily injections to get better. Alternatively you could use the topical Adenosyl/methyl mix from b12oils.com , which I have used before. It is probably best to contact enquiries there and ask for their help

    • Lynn_M says

      Frank,
      I agree with Madge that her B12 injections were likely cyanocobalamin. People with common genetic polymorphisms can’t metabolize cyanocobalamin and need either methylcobalamin or hydroxycobalamin, which the body uses in the cytosol of cells. People also need adenosylcobalamin, which is used in the mitochondria. Using the topical B12oils that Madge mentioned may be the easiest course of action right now, unless you can get a doctor to prescribe high dose methylcobalamin injections. Adenosylcobalamin can be taken orally.

      Was your wife tested for pernicious anemia, where the body makes antibodies against intrinsic factor? That could explain why her B12 was so low.

      Your wife might also have a deficiency of B12 in her central nervous system. That will require very high dosing of B12 to overcome. To learn about that, go to forums.phoenixrising.me/index.php?forums/detox-methylation-b12-glutathione-chelation.6/ and search on “central nervous system” for posts by Freddd.

      The serum B12 test measures both active and inactive forms of B12, and it measures what is in the blood, not in the cells. A high value doesn’t mean there is enough of the active transcobalamin form, especially if there is a CNS deficiency. As long as your wife has symptoms, the serum B12 level is probably meaningless. A urinary MMA test is a better test than the serum B12 test.

    • Melissa L says

      HI – Any chance your wife has been test for the MTHRFR mutation that affects how B vitamins are metabolized? I have both mutations (C667T) so I have trouble metabolizing folic acid and B12 especially (estimates range from 5% – 30% efficient). I take methylcobalamin (B12) and methylfolate – bioavailable forms – and avoid regular B12 and folic acid supplements (or fortified foods). Note: I have learned there are very few doctors aware of the mutation or its implication beyond pregnancy and neural tube defects. BTW there are estimates that 30-50% of the population have one mutated gene and 5-10% have both copies mutated.
      Prayers and warmest wishes on your search and healing!

    • Donna says

      No caffeine, no alcohol, no processed foods. Protein and good fats at every meal. No more than 2 starches a day, not to eaten with protein. A cup of homemade ginger tea (3-4 tbls of chopped ginger steeped for 10 minutes) 1/2 hour before meal, no fluids consumed with meal. Cabbage, sea salt, tomatoes, olive oil, home made nut milks, sardines, clams, beef liver, plain yogurt, 2% milk. Vitamin supplements: iron, cod liver oil, ( vit D depending on where you live), K2 and a zinc tablet before bedtime.

      I also take enzyme Q10 and brewer’s yeast tablets. Breakfast: Sunflower seed/almond milk, vegetable and cheese omelet with half an orange. Snack: glass of milk or a small bowl of oatmeal. Lunch: a quick clam tomato sauce over a large bowl of lettuce. Recipe: 1/4 – 1/3 cup of olive oil med heat add one peeled chopped carrot sauté for 3 minutes add 4 – 8 minced garlic cloves, 30 seconds later add two medium chopped tomatoes, 1/4 tsp salt, 1 tsp dried oregano, 1 tsp dried basil, 1/4 tsp chili pepper, some ground black pepper and 1/4 cup white vermouth simmer on medium for 4 – 5 minutes. Remove from stove, add 1/2 can of drain clams and juice of half a lemon and stir. Pour your sauce over bowl of washed and dried lettuce. Optional finely grated Parmesan cheese. This recipe also works with a can of sardines, replace carrot with 1/2 a fennel bulb, less 1/2 a tomatoe and 1 tsp of fennel seeds. Snack: Julia Child’s potato salad made with white vermouth. Dinner protein and veges. Snack: 2% milk.

      Never give up hope! :)

    • Lynn says

      I know this is an older post but I am doing my own research for me and this came up. However, in reading your post this sounds exactly like what my daughter-in-law was going through and it was diagnosed as Celiac disease. She cut out all gluten and within days she was feeling much better. She too had suicidal thoughts from the pain being so bad. This may not be the case with your wife, but you might want to check it out if you haven’t already.

      • lis says

        i too believe that celiac disease can cause this. i have learned that i am allergic to wheat. i was wondering if it could be a gluten allergy. a few days after stopping wheat (and gluten) my nerve, stomach, and heart problems went away. my nerve pain and twitching, stomach pain, and heart palpitations were scaring me. my heart would beat rapidly, stop (skip few beats), continue slowly, then quickly, etc. my stomach would cause me so much pain, swell up, felt like it was full of razor blades.. since i was a child i remember having pain after eating bread, didn’t know it could be an allergy. i went to the doctor who (i know i’m not the first one to experience this) basically said i was making it up. i never thought the heart and nerve problem could be related to wheat. i stopped eating wheat because of my stomach. i didn’t know it would solve the other issues. it’s been a few months of not eating wheat and i’ve had a few accidents of eating wheat. usually i first notice when my muscles start twitching. then i realize i had wheat. maybe it allows b12 to be absorbed, maybe it’s independent of b12.

    • Denise says

      This is not intended to be disregard the tremendous suffering your wife is experience but your post reminded me of this video. Some argue that conversion disorders do not exist but the mind/body is an infinitely complex system so who knows.

  48. Veronica mcguigan says

    My daughter starting loosing her eyesight about eight weeks ago an after a lot of tests the dr has said he thinks it down to her b12. She had to get injections for 14 days every day an now twice a week until things improve but the eyesight hasn’t got any better. She is only 19 so this is a very worrying time for everyone, we have been told there is no guarantee the sight will return to normal

    • Helene says

      It may help to find a doctor who works with genetic methylation and the MTHFR genes to see if they can help your daughter with the B12 problem. There are companies that do genetic testing that could refer you to a doctor.

    • Lynn says

      What type of vision loss is she experiencing? Has she had a lumbar puncture to determine her intracranial pressure? Many folks with Idiopathic Intracranial Hypertension (IIH) seems to also have low B12 (not sure why), but one of the symptoms of IIH is Papilledema. IIH is often misdiagnosed, and incredibly frustrating and painful for the patient and loved ones. I hope it’s just B12 – much easier to treat, but vision loss is not something to sit around waiting idly hoping for a solution.

    • Bartybear says

      A friend of mine had an episode where she lost her sight for some time then returned. At the time, they put it down to the fact that she was pregnant. A few years later she was diagnosed with an under active thyroid and told that her loss of eye sight will have been linked to this – maybe worth getting tested? Must be very scary for your daughter I hope she finds a resolve x

    • Molly Malone says

      I have no real idea what has happened to your daughter, but please also consider taking a look at other vitamin deficiencies as well, notably vitamin A. Many people cannot convert carotenes into vitamin A efficiently, so they become deficient – this particularly applies to vegans and vegetarians. Only animal foods have actual vitamin A in them, and supplements almost all have synthetic – not as good. The best source I can find seems to be cod liver oil that has not been stripped of its vitamins in the processing techniques. There are only a very few, most American cod liver oil has synthetic vitamin A added back in at the end of the process, unfortunately. Synthetic may be better than nothing, but the real deal is always best.

      You can find info here: http://www.westonaprice.org/health-topics/cod-liver-oil-basics-and-recommendations/
      And here: http://www.rositarealfoods.com/cod-liver-oil/2-artisan-extra-virgin-cod-liver-oil
      And here: http://www.ratfishoil.org/rosita-ratfish-oil/about-ratfish-and-ratfish-liver-oil This is not cod liver oil but ratfish liver oil. This is what I use.

      You can find cod liver oil here:
      1 – http://ratfishoil.net/ This is from Norway, not cheap, but excellent. I use their ratfish oil, and my kids take it as well.

      2 – http://www.greenpasture.org/public/Products/index.cfm This is fermented cod liver oil, very good for health, but very strong tasting. I used it, but my kids refused to take it.

      3 – Carlson’s cod liver oil is a good second choice, and is available at market’s like Whole Foods and co-ops and health food stores, as well as online, like Amazon.

      I wish you the very best.

    • Rekha Sharma says

      Dear Veronica and well wishers, My parents and I have experienced temporary vision loss/complaints/weakness of some sort at varying levels. Both parents suffer from other underlying problems, and I was recently diagnosed with B12 deficiency! Please give “schizandra berry” a go for your eye problems as it’s worked a treat for us. It also helps aid a healthy liver (which we all know stores our B12). To good health x

  49. AnnF says

    Can anyone help me?
    I don’t know if it’s because of the B12 deficiency or something else, but I have asthma and sinus problems. The problem is mucus ( sorry, gross I know) that goops up my whole respiratory system and even traps food on the way down.
    Any vitamins I should take, teas I should drink, foods I should eat or avoid? Anything? It’s kind of the last thing that’s holding me back, but it’s really a big thing.

    • Amber says

      Hi Ann, you might want to check into Patrick Mckeown’s dvd/book/cd set called “Buteyko Clinic Method 2hr DVD, CD, Manual; the Complete Instruction to Reverse Asthma…”. It’s available on Amazon.
      I bought it for a reason other than asthma, but it’s really directed at asthma sufferers. I find the excercises helpful so far and I believe will help you resolve your symptoms.

    • Robert says

      My wife had sinus problems all her life and two years ago it was so bad that she was coughing for four months non stop. Every winter she was on different kinds of antibiotic and her nasal was always congested and very weak as a whole.
      As a result of her sinuses she got pneumonia few times in past and consequently she got scar on her lungs. Two years ago pathology expert suspected of aggressive cancer in her lung, but thank God he was wrong. As a result of that we went to a lung specialist and the doctor diagnosed my wife with severe sinusitis which was the cause of her pneumonia problem.
      They put her on heavy antibiotics, but after clearing this time, I thought enough is enough, and after long research on internet I asked my wife to start to take (Bragg)Apple Cyder vinegar with mother in it, and as a result of that, for the first time in her life she is free from sinus problem for last two years.
      She was a frequent visitor to doctor for common cold and influenza but thank God for this simple solution she hasn’t visited doctor since two years.
      She started taking one tea spoon mixed with water three times a day before breakfast, lunch and dinner.

      Hope this help. God Bless.

      • AnnF says

        Robert,
        Thanks! I kind of do take a tablespoon of Bragg (the best!) with water and honey, but only once a day. Though I like the taste, and it makes me feel pretty good, I’ve unfortunately only taken it sporadically. I think I’ll get another bottle today and stick with it.
        I started a cold on September 3, and it’s just going away now. My sinuses still hurt. So, here’s hoping it works as well for me.

        • says

          I can’t take Braggs for my coughing(asthma/mucus)because I also have Barrets(esophigyle erosion)it burns too much.Has anyone tried ACV tablets with any luck?

          • AnnF says

            Bee,
            I’ve taken Swanson Double-Strength Apple Cider Vinegar that I bought from Amazon.
            I haven’t taken it for long enough periods of time to tell how good it is, though it does give me that calm feeling that Bragg gives me, but it received good reviews on Amazon.

            By the way, I don’t know if it still helps anything when cooked (I don’t see why not), but I use it in things like pancake batter. The batter smells of vinegar, but the pancakes don’t taste of it. They taste gooood.

          • AnnF says

            Bee,
            I forgot to say that the pills helped my heartburn. The one time, they worked instantly, even better than Tums. I figured I’d let you know if they helped with that, they must be doin’ sumpin’.

      • AnnF says

        finndian,
        Thanks for your help! I looked up NAC on Amazon, and quite a few people complained about stomach upset, so I think I’ll wait to see how the Apple Cider Vinegar and the breathing exercises go, but I’ll definitely try NAC if things don’t improve in 6 months.

    • AnnF says

      Thanks so much for everyone’s help. My inhaler barely works, and this past month and a half has been really bad. I must admit, I have been pretty lazy, and not followed through with a lot of health plans, but your quick replies have made me determined to get better, starting today. In six months, I’ll let you know how it’s going.

  50. Tanja says

    I have the opposite issue- my levels of B12 are very high -1300 per last blood test done (without supplementation). I have a huge gut issues for already 8 months (not digesting anything without help of digestive enzymes) and everything started with Advil pill I took on an empty stomach. After this, my digestion completely stopped. Having all this indigestion/malnutrition issues , one would think that I would not absorb B12 as well. Homo-cysteine levels are normal and I don’t have MTHFR gene mutation. The blood tests don’t show any sign of malignancy (often connected with high levels of B12).
    The only thing I could think of is that my liver is not working properly (although standard liver tests are OK) and it’s dumping B12 into my blood instead of inserting it into the cells so the test show high levels although my cells are maybe lacking B12.
    Any other ideas?

    • AnnF says

      Did you just have a blood test, or MMA, or any other test mentioned here? It could be just that the test you took is at fault. You are right to be concerned. It is strange that with such a bad digestive problem that any test would show a high B12 level.
      As for your stomach issues, have you thought of a cleansing fast done at a facility? I have heard quite a few stories about how it can release toxins and “reset” your system. However, I would wait for a few more months to see if your body slowly but surely heals itself.

      • Tanja says

        Thank you Ann for responding to my post.
        This B12 level was determined by routine blood test- so I guess it’s total B12. I didn’t get MMA test as I didn’t know it exists- I will have to check with my FD if I can do more specific testing.
        As for the digestive issues- I didn’t try fasting diet as I lost 30 lbs because of all of these digestive issues (I had 90 something lbs on 5”5′ heigth) and I regained half of it back now….but when this all started I barely ate anything for 2 weeks and it didn’t help at all:)
        Answer is somewhere there I just need to keep searching for it.

        • AnnF says

          Yeah, I don’t know if barely eating and fasting are the same thing, I would assume they are. Any info I have on fasting is anecdotal, so I don’t know the specifics. It should be done as one of the last things to try, I don’t know why it popped into my head right away, maybe because I heard when something stops working, fasting helps to start it again.

          Glad to hear that you’re slowly coming back. I am still puzzled about your B12. Maybe your liver is releasing extra B12 in order to help heal yor stomach, or to compensate for it, or maybe your levels were even higher before. Let me know if you find anything out.

        • Lou says

          Hi Tanja,

          I have really high b12 – been tested for blood disorders like PV and leukemia and liver function is fine. Did you ever manage to get a resolution/answer to your high b12?

    • Dorie Tiseth says

      I sure do have comments. My b12 level on the CBC test is more than 1500. A few years ago my b12 level was at 235 and my doctor put me on b12 shots. Getting an injection every month did not do the trick. I was exhausted and dizzy. I asked to have injections at least twice a month. I became so much better. By big mistake was to quit the injections and started on b12 tablets. I was so ignorant and did not know that the tablets were not being absorbed through my small intestine. For the last year and a half stayed at home because I suffered from sudden bouts of diarreha

      • Dorie Tiseth says

        Sorry I was cut off. Anyway, I had many symptoms of b12 deficiency fatigue, dizziness, anxiety. I went many doctors who practically threw me out of their office because my b12 levels were so high due to taking high doses of tablet b12. I begged to have a parietal antibody cell test and the folate which both showed problems with the absorption of b12 through the small intestine and that despite the high levels of CBC test I was b12 deficient.

        I have pernicious anemia in my family. Unbelievably, the doctors still deny me b12 shots. I am about going crazy. I was able to find a b12 supplement that absorbs more easily and some of my symptoms have subsided. I know that injections are the true answer for helping my b12 problems. Keep your fingers crossed for me I am going to another hematologist, hopefully he will give me the help. I need.

        • Tanja says

          Hi Dorie,

          You have another option available : B12 patches , you will baypass the gut this way. I don’t know if the patches really work but a lot of people say they helped them.
          And there is also a sublingual B12 spray.

          • Madge says

            I use the oils from http://b12oils.com/Home.htm
            These are great. They have even been shown to be of great benefit to people with acute B12 deficiency such as is found with chronic fatigue syndrome. You simply rub them on your skin. They gradually release the B12 over hours and hours. Much easier to use than the Patches, which I have tried and which didn’t work

        • says

          I have the same issues as my B12 is over 2000 no suppliments at first.Been doing injection now once a week.Forget the hematologist go find a N.P. to prescribe it.Down side it’s a self injection.No biggie after a couple of times!

    • Laura says

      Have you had your lithium levels tested? That helps transport B12 into the cells. I would also suggest getting a DNA test from a place like 23andme. I did and I found out I had genetic errors that cause me to be unable to convert b12 into methyl b12.

    • KK says

      You are deficient in B12 – in US anything under 300 is.
      And if you ask EU/Japan – anything under 500.

      I suggest starting with B12 shots or big doses of sublingual methylcobalamin ASAP.

  51. Ann Ling says

    I have to have B12 injections, and will have to have them for the rest of my life, my Doctor is not very knowledgeable on the subject and feels normal levels should be between 200 and 600, I was so ill with a level of 192 I was falling over and so tired I was unable to function I am a young 77 year old and believe these levels quoted are much too low. Ann

    • Tracy says

      Ann, I totally agree that the levels used are much too low and need to be revised. My level was 196 and I was severely ill, fatigued, depressed, shooting pains in my legs, lost a lot of weight, and had to use a walker. Referring to the minimum of 200, my doctor said he doubted that my slightly decreased B12 level was causing my symptoms. Wow was he ever wrong about that!

      I’m so very thankful for the internet, because I did some research and learned that my symptoms matched those of B12 deficiency. I knew that had to be what was ailing me. I had to be a real pest to get my doctor to start treatment.

  52. Marilyn Cody says

    Sadly a lot of drs are not aware of the genetic mutations MTHFR with Vit b 12 .Both my husband & I have been diagnosed.So an infant can be born with it especially if the mother is a vegetarian.My lifesaving book was Sally’s book Could it be B12 ? Just so frustrating when I have seen 15 drs including 7 specialists waste of money A dr at Ed suggested because of my symptons but was dismissed as level was 290 in norm range.My husband almost killed himself with memory loss .I just wish we could get it out there istead of being told its in your mind hardly with severe tinnitus numb feet approx 25 other symptons.

    • Stephen says

      That is a revelation to me that tinnitus can be a symptom of Vitamin B12 deficiency! I have recently been diagnosed with a very low Vitamin B12 level. My Naturopath was amazed I could still function normally with the levels I had. But my tinnitus is pretty bad. Perhaps with me that is where a low Vitamin B12 level has revealed itself.

  53. Ron says

    I was diagnosed as being anemic when I was very young. Maybe 8 or so. About 30 years ago my B-12 level reached a low of 75 and I was having problems remembering where I was going, almost falling asleep at traffic lights, and not remembering peoples names. I also was getting short and upset and having heart problems. I went to several doctors and no one checked my B-12 levels. One day when I was driving on the freeway, my vision became double and I had to close one eye in order to get off safely. My wife and I spent several days going to various doctors, when a neurologist finally discovers I had a b-12 deficiency. They started me on immediate injections and told me I would have to take them the rest of my life. I was told that my body destroyed any B-12 orally and that my body no longer produced it. I found that when my level was over 1000 I felt best and had more energy and strength. Because of health insurance I have had to switch doctors. So far I have had to train 4 different ones on my condition. Perhaps it would be good for them to teach this in medical school. I did have the same problem walking when this started as many of you. Everything was on my left side and that is the way I kept walking. My wife had to hold me by the belt to keep me going in a straight line. When my level of B-12 went up, I was able to correct the nerve that controlled the eye and get ride of the double vision. It took about 8 weeks.

  54. Christy says

    I was diagnosed with a B12 deficiency at 8 years old. My teacher called my mom to tell her there was something wrong with my health, and it was discovered I was severly anemic due to a B12 deficiency. I was given B12 shots at first but since I was needle phobic, I ended up taking prescription B12 pills. I am now 40 and take B12 pills to this day. It is a scary thought to know that if I had been born just 100 years earlier, I would most likely not have survived to adulthood.

  55. Zowiezombie says

    Hi there,

    I have what my MD is calling neuropathy in my left arm. It tingles and there’s a spot that itches although there’s nothing there to be itchy. It kind of travels down my arm and sometimes feels kind of like an electric shock. She’s never done any tests just said that’s what it is. After reading about B12 and how people who take acid reducers and Metformin have a higher chance of their levels being depleted I decided I should have it checked. I just got back the results on just a straight up B12 test and the result is 540. I’ve read on some websites that even though the blood test says number is normal that it’s still low. Does anyone know? Could the level I have still cause neuropathy? I’m considered “pre-diabetic” my A1C is 5.3. Thanks for any ideas!

    • Madge says

      Hi There, your B12 levels would not normally be considered to be low at over 500, but it depends if you have been supplementing and what you have been supplementing with. Other causes of peripheral neuropathy can be low intracellular folate, low B group vitamins in general, and low vitamin D. Your intracellular folate should be above 7 ng/ml, whilst with vitamin D, it should be as high as possible (.50 ng/ml).

      • Zowiezombie says

        Thanks for the response Madge, no I hadn’t been taking any vitamins except for Vit. D. Before I started taking the D years ago my level was 8. So, I guess I need to ask my doc to check my folate then. I’ve started supplementing some B12 now just in case. It’s just some cheapy stuff I got at the drug store. 5000mc I figured that might help some even if it’s not a better brand. :)

        • Madge says

          Hi Zowiezombie, looks like you have a bit of sleuthing to do. If your genetic profile is normal it will be different to if you have methylation associated mutations. If you are deficient in B12 you will have to try to work out why. If you have a vegan or vegetarian diet, then it is quite simple, you need to supplement with B12. If you are hypothyroidic (and you will need tests to determine this) you will need to fix this. Folate and B12 are very inter-related in how they work together. It is actually quite hard to get enough folate if you don’t eat lots of green leafy vegetables. If your genetics is fine then normal folate will also be, but if you have methylation problems, particularly MTHFR, you will need 5-MTHF (deplin). The easiest thing will be identifying why you are deficient.

    • Rose says

      ZowieZombie…From what I’ve gleaned from the internet, the serum B12 test doesn’t differentiate between active and inactive B12. Your result can actually be up to as much as 90% inactive B12. I have ‘failed’ all my B12 tests. They all come back as normal to high B12, but my RBC count was as low as 3.8 at one stage, MCH and MCV levels were both slightly elevated, I felt like a rag doll, had no energy, just couldn’t function at all unless I took transdermal B12. GP swears I don’t have a B12 issue even though I now have a swollen tongue. I am doubling my dose of B12 in case I’m just not taking enough. It would be a big help if doctors would go back to the old ways and read the symptoms. Numbers on a chart are totally useless IMHO.

      • pam says

        @Rose,

        that is very interesting.
        once i was diagnosed with severe anemia (RBC was also like 1/2 of lowest normal & many others also abnormally low;
        my B12 was really high

        (800 i think; i don’t remember the numbers — dont’ have the test results handy right now)
        i was tired all the time & hair was brittle & thinning.

        then i ate liver everyday for 2 months & finall bright it to low end of normal.
        mmm i wonder if my high B12 level was “inactive” so even it was high.

  56. AnnF says

    Should I take my B Complex containing Folic Acid and C, with my B12, or some hours later? I know B12 travels with folic acid, and was wondering if that’s a good thing, or if they have troubled separating.

    Also, all my life I feel sea sick whenever I read. Does anyone know if that’s B12, or something else, like some form of dyslexia? I can read well, it’s just that I feel sea sick.

    • Laurie says

      Ann, I just have to chime in here and tell you to go google Irlen Syndrome. My daughter has it and it made a huge difference in her life when she started wearing her special glasses, and later, contact lenses. I think it’s something that too few people are aware of, and I hope the info helps you.

      • AnnF says

        Laurie,
        Thanks for the info. I looked very quickly, but I don’t think that’s it, because it seams that the quick info I looked at pairs it with trouble with reading comprehension, or some other learning difficulty. The only problem I have is the nausea, but I definitely will look further into it. I’ve had sinus problems for a long time, and I’m kind of thinking that is really what it is. However, I saw a show — “The Incurables”, I think — and a man had problems reading, along with a feeling of motion as he tried to concentrate on the words on the page. He was diagnosed with dyslexia, but found a doctor in California that prescribed a certain color glasses for him to wear, which make his dyslexia go away. Are your daughter’s contacts tinted? Was her only symptom the feeling of movement? What type of doctor can diagnose this?

        • Laurie says

          It’s thought that Irlen Syndrome may be a form of dyslexia, so the man in the movie being helped by colored glasses would make sense. My daughter hated to read because it caused her discomfort. She would get headaches, preferred to read in the dark, and although brilliant, she had a lot of trouble with comprehension because of what she perceived as movement of the words on the page. The end of one word would “run” into the beginning of the next sometimes. Florescent lights are the worst! My daughter’s contact lenses were specially colored (several layers of colors, in fact) and looked light gray. She actually no longer needs them because she learned over time to adjust and be aware of circumstances in which she might have a problem. After struggling to get through 8th grade, she went on to be graduate High School as Salutatorian of her class, get an Associate Degree in Graphic Design, a B.S., then a Master’s in Teaching by the time she was 22! The glasses/contacts got her through a tough time. I hope you figure out what your problem is.

          • AnnF says

            Great! I’m a classic underachiever myself, and I admire people with drive, like your daughter.
            The man in the show described what he was experiencing almost the exact same way. I’ve had sinus problems for most of my life, and I just had a virus that lasted for over a month and a half and really did a number on my sinuses — even the pressure of my readers made me queazy. That’s why I was thinking recently that that must be the cause. However, some of what you said does sound like it could be right, and the one site did have as an added note that some people only experience nausea. So I will definitly look into it some more.
            Who diagnoses it, though, a regular Ophthalmologist, or someone else?

    • Jennifer says

      You would be better off taking folate rather than folic acid, which is a synthetic substance, High intakes of folic acid have been associated with cancer, they can mask a low B12. Also, regarding B12 there are a couple of paragraphs above that read: “A high intake of folic acid might mask detection of vitamin B12 deficiency and lead to a deterioration of central nervous system function in the elderly. In one study, consumption of folic acid in excess of 400 micrograms per day among older adults resulted in significantly faster rate of cognitive decline than supplement nonusers. (11) Another study found a higher prevalence of both anemia and cognitive impairment in association with high folic acid intake in older adults with a low vitamin B12 status. (12) As vitamin B12 deficiency is a common problem for many older adults, these studies suggest that high folic acid intake could cause serious cognitive consequences in the elderly.

      Despite the risks associated with high levels of folic acid intake, it is well established that adequate folate intake from the consumption of folate-rich foods is essential for health. Folate aids the complete development of red blood cells, reduces levels of homocysteine in the blood, and supports nervous system function. It is well known for its role in preventing neural tube defects in newborns, so women of childbearing age must be sure to have an adequate intake prior to and during pregnancy.

      Excellent sources of dietary folate include vegetables such as romaine lettuce, spinach, asparagus, turnip greens, mustard greens, parsley, collard greens, broccoli, cauliflower, beets, and lentils. (13) Not surprisingly, some of the best food sources of folate are calf’s liver and chicken liver.”

  57. Lan says

    How long does B12 from an injection stay in the body?
    ND says could be around and affect blood test result after 2.5 months; MD says it can only be around 2-3 weeks.

    • AnnF says

      I don’t know about blood tests, but I’ve heard some people say that for them, the effects only last one day.

    • Greg says

      Hi Lan, the real answer is “it depends”. Thus, the half-life of stored B12 is over 200 days. The half-life of injected B12 is different, and it depends upon how it is administered. IV injected material seems to have a half-life of around 16 hours. Thus a 1 mg dose would be almost totally gone (less than 4 ug left) by 9 days. IM injected material lasts slightly longer, but probably not much. Topically administered material in b12oils would be longer due to the depot effect of the skin. IM injected material given 4-6 weeks apart doesn’t actually top up areas such as the brain or restock the liver, because if it did, you would only need to have 3 or 4 injections every 4-5 years, In stead the IM injected material give you this massive peak and trough effect. What is also important is that the B12 has to be around to saturate any “free” transcobalamin (holotranscobalamin), as this is the protein that is required in order to get cellular uptake. Only about 25% of protein bound B12 in serum is bound to TC.

  58. says

    Great post, thank you. I have ulcerative colitis so B12 deficiency is a big concern for me. Just wish I could find a doctor who took it as seriously.

    • Greg says

      Sorry to hear about your UC. Make sure that you get your vitamin D levels up as high as you can. Vitamin D is supposed to be very good for UC. Apparently there are lots of vitamin D receptors on the gut wall, and they help with the maturation of the gut cells. I’d also make sure that you check out on iron deficiency as well as B12 deficiency. Apparently 85% of people with IBD conditions, including UC get iron deficiency. The reason is most likely due to poor maturation of the gut wall, plus loss of uptake of recycled transferrin as this is compromised in UC. Sorry haven’t tracked out the best method for iron supplementation, but evidence suggests that you are wasting your time unless you get injections. You will of course need vitamin B12 via a non oral route, such as injection or transdermal oils.

    • AnnF says

      Can you take vinegar with UC? I know the unfiltered Apple Cider Vinegar — the one that is cloudy, and has a goo on the bottom called the mother — is good for heartburn/ acid reflux, and many other gastro-intestinal issues. I would also avoid wheat products, and I believe you should avoid dairy, but you can still take pills for any nutritional loss.

  59. doe harrison says

    I have pernicious anemia and have received injections monthly for years. I am told there is a shortage of the vaccine now and am unable to receive the injection. I have had balance issues and extreme tiredness for no reason recently. I now take one 1000 mcg daily. Having trouble figuring how much I really need. This concerns me. Doc says ask pharmacist, Anyone know?

    • AnnF says

      Yeah, and when you ask your pharmacist, she’ll say to ask your doctor. I was taking 20,000 mcg for over a year — probably 2. That was 2 5,000mcg sublinguals in the morning, and 2 at night. I eventually lowered the dose to 1 sublingual a day, but pain in my legs kept coming back after a month or two, so now I’m keeping it at 2 pills once daily, and that seems to work well. there is someone on here touting an oil version, and I might give that a try. In my opinion, 1,000 is O.K. for anyone who hasn’t shown symptoms yet. As I’ve said elsewhere, there are VERY, VERY few cases where someone can’t take B12, but everyone else should take it, because it’s so important.
      Also, make sure your D levels and Magnesium levels are good. I ignored Dr. Oz about magnesium, saying to myself, “It’s a trace element, I’m sure I get enough,” but he was right, and I was wrong.

      • Madge says

        You basically can’t overdose with methyl or adenosylcobalamin, although some people react badly to cyanocobalamin (the normal supplement type in the US) or hydroxycobalamin (now a replacement). If you are one of 30% of people you have trouble converting cyanocobalamin or hydroxocobalamin to the two active forms methyl and adenosylcobalamin due to mutations in the methionine synthase reductase gene. This doesn’t normally affect people that much if they are getting dietary B12, as the forms in the diet are adenosyl and methyl B12 (cobalamin). This may be a reason why the ultra high doses are not really doing much for you. I had this problem which is why I use the mixed Ado/MeCbl from b12oils. It is an oil that you rub into your skin. Works a treat.

        • doe says

          Thank you for reply. I started taking magnesium on ma own because of severe leg cramps. Still get them but less frequent and shorter in duration. I am learning a lot from you and others input. I agree, most drs. do not know much about b12 or pernicious anemia. Would you or others recommend a neurologist instead of internist?
          I also was on folic acid many years ago but new doc says do not take. I am losing faith.

          • AnnF says

            Doe,
            It really depends on the doctor, from what other people write, neurologists don’t seem any better than any other type of doctor. I don’t know how to find one that actually believes in vitamins as therapy. I complained to mine all the time about symptoms I was having, but she was just worried about my BP and if the medicine lowered it enough, nothing, and I mean nothing more.

            Anyway…did your doctor say why he didn’t want you to take folic acid? As far as I have seen, most doctors advise to take a general B supplement, and specifically, Folic Acid. My reading has advised this as well.

        • AnnF says

          Madge,
          There are one or two diseases I’ve read about where taking extra B12 can be harmful. I can’t remember what they are, because I didn’t have them, but if you do have them, you more than likely have seen a doctor and know. I think they even advise against eating liver and other things high in B12.

          • Madge says

            Hi Ann, that is very curious. It must be extremely rare as I have never heard of it. There is one disease Leber’s disease where you shouldn’t give cyanocobalamin, but adenosyl and methyl are fine. VB12 is essential for life. If you don’t have it you basically die, so it is hard to imagine that these conditions ever survive the womb, and anyway the foetus gets B12 from the mother, to the baby so it would die before birth. Can you give us more details? Was it from a publication, or from “web” chatter?

            • Annmarie Flynn says

              Sorry, but as I said, I didn’t have them (I think there were 2), so I didn’t pay too much attention, but I did feel a little guilty saying EVERYONE should take B12.
              I believe I read about one on, is it NIH or NIMH website?, or some other med site like that. The other was an ailment that has to to with the digestive tract, especially the colon, I’m pretty sure. Or maybe the bladder, I think I was looking up Interstitial Cystitis because I had been looking at marshmallow root tea on Amazon, and a lot of people used it that had IC. So, I googled and looked and followed links, and it could be IC, or one of the dozen or more other diseases that had links — now you know why I don’t know which disease it was…and why my house never gets cleaned.
              Sorry I can’t be of more help, but I definitely know I saw the warning(s) against B12.

  60. says

    The exact same article could be written about magnesium. Just replace “Vitamin B12″ with magnesium, and, well, same article. You could say the same about thiamine too – another B vitamin.

    When are people, doctors in particular, going to start looking at what depletes cellular minerals and B vitamins? When you start looking at a bigger picture, you might actually find some culprits. The culprits are the pharmaceutical industry. One, of probably many, class of drugs that depletes magnesium, B vitammins and iron – and causes mitochondrial damage / oxidative stress – is fluoroquinolone antibiotics (cipro/ciprofloxacin, levaquin/levofloxacin, avelox/moxifloxacin and floxin/ofloxacin). But doctors give them out like candy despite the 43 PAGE warning label.

    Here is a great article about how fluoroquinolones are a risk factor for type-2 diabetes – http://www.medical-hypotheses.com/article/S0306-9877(14)00217-5/fulltext A similar one could be done for all of the diseases mentioned at the top of this article.

    • Molly Malone says

      Thank you Lisa! I totally agree, and I had no idea about a warning label of any length, let alone 43pgs! I also think there has to be more to this issue (nothing is ever simple, is it?) than just the fluoroquinolones. I have never taken them, yet I have chronic fatigue with fibromyalgia, and I battle chronic migraines – I’m coming down from one right now so if I sound out of it, it’s because I am a bit, sorry. Fluoride and bromine (used to bleach flour in breads) each do a real number on the thyroid and displace iodine, the only nutritive halogen as far as I know.

      Could we add to your knowledge with the hypothesis that any fluoride from any and every source is also a possible contributor? I’m thinking of toothpastes, fluoridated water, fluoride tablets (no joke, this happened to me) that pediatricians and dentists prescribe for small children ‘for their teeth’, and industrial fertilizers. I’m under the impression that those fertilizers have a lot of hidden poisons in them under the ingredient “inert ingredients” and one of those is fluorides. These may either be uptaken by the plant foods we eat or those fed to animals, or they may interfere with normal plant uptake etc. ultimately rendering the plant deficient at best, toxic at worst.

      Some vaccines have or have had fluoride as an ingredient, too. [What genius dreamed that one up?!] Here’s a pdf chart, you have to click on the link:
      http://www.cdc.gov/vaccines/vac-gen/additives.htm

      What’s your thought on all F sources? And possibly bromides as well, since they are also in some vaccines and in our food now, too? I think these ingested and injected toxic halogen compounds can and do ruin many pathways in the body, not the least of which is this B-12 issue.

      • says

        Hi Molly,

        It’s funny, you’re the third person in 24 hours to ask me about the fluoride connection. I think that it may be a sign that I should look into it more thoroughly. :)

        Dr. Mercola thinks that the fluoridation of fluoroquinolones is the main problem with them. Here is one of his articles on the topic – http://articles.mercola.com/sites/articles/archive/2013/09/25/fluoroquinolone-antibiotics.aspx

        I believe that the problem with fluoroquinolones (FQs) is more in what they do to cellular magnesium levels and mitochondria. FQs deplete intracellular magnesium. Intracellular magnesium is really, really, really important. It is vital for more than 300 enzymatic reactions – including the utilization of all of the B vitamins within cells and the production of ATP in mitochondria. When cells are deficient in magnesium, the mag/calcium balance is thrown off. Too much calcium can translate into too much superoxide production. Superoxide is a potent oxidant that can wreak havoc on the whole body. FQs are a big culprit in depleting cellular magnesium, but they’re not the only one. Here is a list of drugs that deplete magnesium – http://www.jigsawhealth.com/resources/drug-muggers-suzy-cohen-magnesium

        A fluorine atom was added to the quinolone molecule to make it more potent and so that it could more easily penetrate tissues (and cells?). The fluorine/fluoride may be the key to how FQs break open cells to deplete magnesium. I’m not completely sure about that though.

        Thank you very much for your thoughtful comment! I definitely need to take a closer look at the role of fluoride in the mess that is Fluoroquinolone Toxicity.

        Regards,
        Lisa

        • Molly Malone says

          Thank you very much Lisa, I follow Dr. M too, he’s very helpful. I didn’t realize about the magnesium connection, and I have never taken an FQ, but I’ve had 2 flu shots, and vaccines of course, and I am horribly magnesium deficient. So deficient that I have had to change my (already organic whole foods) diet to try to fix it, and I take a ton of Mg every day. And I have Chronic Fatigue, so I believe it’s all tied together somehow. Thank you for the link and your info which is new to me. Ever onward!

          • finndian says

            Molly, you’ve listed migraines, fatigue, b12 and magnesium deficiency that you can’t seem to cure. All signs point to undiagnosed food allergy and/or under-treated hypothyroidism. You’re sure not going to cure your magnesium deficiency and all those symptoms orally until you cure the problem causing the stomach issue.

      • AnnF says

        You know, not to sound all “conspiracy theory-ish” about it, but it seemed to me awhile ago that a lot of municipalities have been quietly stopping the addition of fluoride to the drinking water.
        Also, I noticed about 15-20 years ago that the bleached flour I was buying always tasted stale. Then, on some cooking show, they mentioned that the chemicals that they used to bleach the flour left a taste that some people noticed. I tried unbleached, and no taste! I now only use “big brand, not organic or anything” flour. I thought it would change the look or texture of my baked goods, but it hasn’t. That goes to show you, let your senses be your guide. Unfortunately, a lot of people have overloaded their senses, which also reminds me — and this is partially a do as I say, not as I do thing — try not to wear perfume, cologne, or use scented stuff. I have heard from different sources that prolonged use can screw up your body.

        • AnnF says

          Sorry, I meant to write, I now only use “big brand, not organic or anything” UNBLEACHED flour.
          Sure wish there was a way to edit, yeah, ok, and wish I had proofread.

  61. Becky says

    Hi,

    I’m looking for any scientific papers that relate to this paragraph:

    “In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.”

    I have a result of 330pg/mL and I have many symptoms but the NHS won’t treat. I’m hoping to go to my doctor armed with evidence in favour of treating me.

    Thanks
    Becky

    • Greg says

      Hi Becky, there are a couple of points of relevance here. Firstly, what is regarded as normal in any country is actually determined by the pathology labs. It has nothing to do with clinical deficiency. Basically the path labs average out their data and then define normal as what falls within 90% of the values that they assess, with low being the lowest 5%. Thus, normal B12 is different in every country and is totally dependent upon diet. I have no idea who came up with this concept as it is absolutely ludicrous. Second, levels in the USA are relatively high because of B12 and folate supplementation of many foods. In Japan they eat lot of sea-food which tends to boost the levels. Many studies have shown that sub-clinical deficiency (as defined by elevated MMA and Hcy) starts at 250 nmol/L or 340 ng/ml. There are, however, a lot of problems even with this assessment. The most accessible way to tell if you are deficient is via MMA, Hcy levels combined with B12 and most importantly symptoms.

  62. Christine Thole says

    Please help! I have horrific optic nerve pain and the only reason found could be low b12 ( 150). The doctors say “that is a little low”, but in reading the thread it seems it is really low. 6 months of b12 injections and nerve pain subsided, just had it checked and I am in the 400 range and all of a sudden I have horrific optic nerve pain again??? I have no appetite yet have put on 20 pounds! I have read that low b12 causes both weight gain and loss. I seem to find conflicting arguments on anything I read.

    • Greg says

      Hi Christine, interesting problem that you have. Be aware that the serum B12 that you measure (400) will be the same type of B12 that was injected, it may not represent active B12. Thus, if you were injected with cyanocobalamin, that is what is most likely in your serum. Cyanocobalamin is a sort of pro-vitamin form of vitamin B12, and must be converted to methyl and adenosyl cobalamin within the cell. The next thing is that when they measure serum B12 it can be on one of two different proteins (i) transcobalamin (the active transporter to take the B12 into the cell and (ii) haptocorrin (this is not active for cellular transport). Hence, just because your B12 level is now 400, if your symptoms have returned it suggests that first, the analogue measured in serum is the inactive one, and second, the B12 that is there is not bound to transcobalamin.
      As for weight gain and weight loss. You need both methyl and adenosyl cobalamin (B12) to properly process your energy derived from fat, and proteins, without it you may feel hungry and so put on weight but feel like you have no energy. You also need vitamin B1 to properly process sugar, so if you are low in this you won’t get energy even from sugar. As an adjunct to this you need riboflavin (vitamin B2). If you are hypothyroidic all of this can be a problem.
      The most important thing is to treat the symptoms as the diagnosis can be ambiguous.

    • AnnF says

      Christine T.,
      What do you mean by optic nerve pain? Could you describe the way it feels, and where it is located?
      Have you ruled out diabetes or problems with your endocrine glands such as thyroid and adrenal?
      Make sure you take Magnesium, Zinc, get enough iodine, and take a B complex vitamin as well as B 12. Also, get your D tested.

  63. Judy says

    This message is for Jerry Boucher
    I’ve been suffering from B12 deficiency for 9 yrs.
    My level was 41, by the time drs. found the problem, nerve damage had happened. I use Nascobal and my levels have been anywhere from 700’s to 800’s except when I had breast cancer it was 200. Right now I’m using the red oil along with my nascobal. I’ve been using the oil for about 4 weeks now and
    haven’t noticed any difference. I wonder if the oil is even going to help my nerves.

    • Madge says

      Hi Judy, Have you been checked for other vitamin deficiencies? Once you are critically deficient in B12 and/or folate your gastro-intestinal tract can become very compromised and you may find that you can’t absorb the majority of your B group vitamins. You need them all if you are going to recover. Also you need to have your vitamin D levels very high for neuronal recovery. All this in combination with both Ado and Methyl B12. If your B12 levels were SOOOO low, you undoubtably would have gut damage and poor absorbtion.

      • Madge says

        HI Judy,
        Me again. I was thinking about this a bit, and then it swigged to me that you are using cyanocobalmin in the Nascobal (I am pretty sure that that is right). I would stop using this. If you are one of the people that can’t convert cyanocobalamin to the active forms (Adenosyl and methyl) the cyanocobalamin may block up the machinery inside the cell that processes the other active forms and stop them from working, The other thing is that the Nascobal B12 will get first look at transcobalamin , which is the protein responsible for uptake into the cell, and may further interfere with uptake of the adenosyl and methyl B12.

  64. Michael says

    @Molly Malone: thanks so much for your reply, I’ll read through the articles you posted.

    Michael

  65. Joe says

    Actually, you can find B12 from vegan sources (algae’s and sea vegetables) and multiple studies prove that they are linked to higher levels of B12, so it’s clearly being absorbed to some extent.

    http://www.ncbi.nlm.nih.gov/pubmed/20108213 – “Compared to the control period, in the intervention period participants improved their vitamin B12 status, significantly reducing Hcy blood concentration (p=0.003). In conclusion, the Klamath algae product AFA-B12 appears to be, in a preliminary study, an adequate and reliable source of vitamin B12 in humans.”

    http://www.ncbi.nlm.nih.gov/pubmed/7562085 – “The vegans consuming Nori and/or Chlorella seaweeds (n = 16) had serum vitamin B-12 concentrations twice as high as those not using these seaweeds (n = 5) (mean 221 pmol/L, range 75-408, vs. 105, 35-252, P = 0.025). In the longitudinal study, six of nine vegans showed slow, but consistent deterioration of vitamin B-12 status over a 2-y observation period. On the basis of these results we conclude that some seaweeds consumed in large amounts can supply adequate amounts of bioavailable vitamin B-12.”

    http://www.ncbi.nlm.nih.gov/pubmed/20013055 – “Chlorella supplement may be useful as a resource of natural folate, vitamin B-12 and iron for pregnant women.”

    In my opinion, the algae’s are a necessity on a vegan diet. It’s not that vegan diets are unhealthy, it’s that most people aren’t properly educated on how to follow a well-planned vegan diet so they don’t run into serious nutritional deficiencies over the long-term. Chlorella provides large amounts of iron, zinc, chlorophyll, nucleic acids, and high-quality bioavailable amino acids.

  66. Michael Fu says

    Hi:
    This is very interesting article. My mom is taking this supplement “Calomide S.C. Tablets 250 µg”, I searched the net and it said contains Cobamamide, in your article you mentioned Cobamide, which is not a true B12 but analog, are they the same thing? The box said B12 supplement.

    Thanks for your help.
    Michael

    • Molly Malone says

      Cobamide ≠ Cobamamide. I think cobamide refers to the general class of all of the B12 analogs: http://www.reference.md/files/D003/mD003038.html
      Whereas cobamamide refers to adenosylcobalamin only. That seems to be the ingredient in Calomide:
      http://en.wikipedia.org/wiki/Cobamamide
      http://www.rightdiagnosis.com/medical/cobamide.htm
      http://www.drugs.com/international/cobamamide.html
      Here’s the best of all, though, this page gives synonyms and cobamamide is a synonym for adenosylcobalamin:
      http://www.ecmdb.ca/compounds/ECMDB02086

      Looking at the structure on both the wikipedia page and this next page, it looks like adenosylcobalamin to me:
      http://pubchem.ncbi.nlm.nih.gov/summary/summary.cgi?sid=7847110
      for comparison, just type adenosylcobalamin into a google search and then click on images.

      It seems that it is actually a very good form of B12, as it is adenosylcobalamin. Whether it is well absorbed in the form it is in is another matter. Sublingual tablets are designed to dissolve under the tongue and absorb across the mouth’s membranes; some of them work fairly well according to those who use them. Pills that are swallowed don’t work so well as the B12 is destroyed during digestion and never makes it to the small intestine where it can be absorbed. Injections of methylcobalamin or hydroxocobalamin work well because the digestive tract is bypassed.

      Your mom’s Calomide seems like a low dose after reading this article, being 250 micrograms, but if it works, then it works.

      • Jennifer says

        Regarding B12 pills not being absorbed from the stomach. I have a friend who is a district health nurse, and her department gets all the people newly diagnosed with B12 depletion. They start by giving methylcobalamin shots weekly, and then the person switches to oral. They also have all the latest research on B12, and supposedly if you give very large amounts by mouth then it will be absorbed. She said that large amounts by mouth are better absorbed than the sub-lingual type..but I have to confess that i am sticking to sub-lingual.

  67. Marlene Penticost Harrietha says

    Dear Chris: I am desperate for your expertise on B12 deficiency. I am 59 years old and at the age of 35 my Dr. Told me I was very low on b12, I wasn’t told I was b12 deficient, I changed Dr’s and did not take my medical records. The doctor I have now had tested my levels, they were 222, this was about 7 years ago. She told me my levels were fine and I have been experiencing many symptoms for all these years. The symptoms I have been experiencing are, insomnia, lack of appetite, weight loss, fatigue, depression, memory loss, panic attacks, I have colitis, vitiligo and the last visit with my Dr. She said that my levels should be at least 300, and to take the b12 pills. I took them for about 3 years with no success, she doesn’t believe in giving the shots. I have very little energy and I am so sick of feeling this way for all of these years. I spoke to many of pharmacist that told me that usually shots are given to bring up your levels then the pills will work. I would greatly appreciate any help you can give me, I am so sick of feeling terrible! I’m afraid that I have a lot of damage because of the length of time this has been going on. Please, please reply, it would me the world to me. Thank you, any info would help, I am feeling so defeated, and you cannot get another doctor in my area. Thanks again

    • Molly Malone says

      Oh my word you poor thing! Many people here know a lot more about this than I do, so hopefully they will chime in, but just to give you more info, here is what I think:

      1 – Read Chris’ articles, here’s another: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency

      2 – Here’s Freddd’s protocol, lots of good info: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

      3 – Check out the book Chris recommends on Amazon: “Could it Be B12?” by Sally M. Pacholok and Jeffrey J. Stuart. There isn’t a particular protocol in this, but there is a good check list on P. 189-193 to self-diagnose and the book is full of info. even if you don’t have a decent doctor at the moment.

      4 – Then write up a protocol that seems good to you, for your own body and situation using Freddd’s guidelines. He gives wonderful info that is not anywhere else, just at least read that one page I linked in #2 above.

      You can get spray on oils for B12 deficiency and use them instead of the sublingual tablets. You spray on your skin and rub in. Here’s the product page: http://www.b12oils.com/Products.htm

      You can also get spray sublingual methylcobalamin at a dose of 500mcg per single spray. This is what I’m using but I need a lot, and more cofactors that I am learning about from both Chris and Freddd (Thank you both!). I get mine from http://www.vitacost.com/ Just type B12 into the search bar and then look for Pure Advantage brand. Yes I can actually feel a positive difference when I use it, but it is slight. (Perhaps I am not using enough? Perhaps I need more cofactors that I am unaware of?)

      I do believe that injections are the best way to go in the beginning, but I went to an ND who still didn’t believe my symptoms, written down and told to her, with me standing in front of her, because the MCV was in range. She is blind in one eye, can’t see out of the other! I got precisely one injection and felt like a new person for 1.5 days, then no more. Bummer. The spray I use is nowhere near as good as that was, so the search continues…

      Try to find another doctor, preferably an orthomolecular MD/DO or a holistic MD/DO or a naturopath (ND) that actually believes there is such a thing as B12 deficiency. Use google to search. You may be able to find someone to help you that will do it online or long distance. It may be worth it to travel once just to get started, and then continue on your own.

      Best Wishes!

    • Greg says

      Hi Marlene, Your description certainly sounds as if you B12 deficiency, particularly when you combine your B12 levels with your symptoms. You will see many protocols on the web-site for getting better. One thing that you need to do before you decide which one is best for you, you need to work out why your are deficient. as this may help you choose the correct protocol. Thus, do you think it is your diet (vegan or vegetarian), genetic problems (methylation associated mutations),, metformin use, hypothyroidism, atrophic gastritis, etc, etc., or is it the colitis? Colitis can be the cause or the effect. If you have colitis, you will also have other B group deficiencies, and possibly vitamin D deficiency, and in addition most oral, sublingual, nasal spray treatments will be almost ineffective.

    • AnnF says

      Hi Marlene,
      Here are all the supplements that I take. I still have my period, and I definitely notice a cycle as to how good or bad I feel, so keep in mind, as a woman, it doesn’t matter if you are post or pre menopausal, you are going to have a certain number of good days and a certain number of bad days each month.

      Anyway, I take
      Natural Factors Sublingual Methylcobalamin 2 5000mcg daily
      Phillips Magnesium Caplets. 2-3 daily
      Feosol Bifera 1 caplet daily-ish
      Vitafusion PowerC 2 Gummies Daily
      Phillips Colon Health. Probiotic caps. 1 Daily
      Sundown Naturals inulin Fiber Prebiotic. 4 capsules daily
      Vitafusion. Platinum 50+. 2 Gummies Daily
      Nature Made Super B Complex. 1 caplet Daily
      Vitafusion Vitamin D. 2 gummies Daily

      I avoid artificial sweeteners as best I can. I would avoid them altogether, but they put them in so many products now, even Wrigley’s gum, that I can’t eliminate them completely.

      I drink unfiltered apple cider vinegar diluted in water, or take the apple cider pills about once a week. More often makes me feel better, but, you know how it is.

      I haven’t tried it yet, but I probably will, try Royal Jelly. If you are severely allergic to bees, you can’t use it, and you have to only start with like 1/8 of a teaspoon a day, but it is supposed to be good for what ails ya.

      I don’t exercise at all (I know, I know). I took a Tai Chi class a few years back, and it did give me a feeling of well being. Something like that, or yoga might help you.

      So, try taking the things I listed for a month or two, and see how you feel. Though, I you may want to take 2 B12’s in the morning, and 2 at night. Also, wait a little while if you are going to try the Royal Jelly, or even the Vinegar. See how you feel with the vitamins first.

      If you don’t notice an improvement after 2 months, have yourself checked for allergies, viruses and the like, and parasites.

      I also drink only water most of the time. Soda gums up the works,and I can feel alcohol in my system for days. I do take aspirin almost daily, but I only use enteric (coated), and never take it on an empty stomach. I also try not to take acetaminophen — I find the fact that they keep lowering the dosage and telling us what not to have with it troubling (after it being sold for over 60 years, they’re just finding out about it now?)

      Just one more thing, coffee was giving me heartburn, so I now take roughly 2-3 Jet-Alert tablets a day until I can kick the caffeine ( yeah, right). They don’t have the same kick as coffee, but one pill gives me quite a bit of stamina for 3-4 hours. That might help you a bit, and for nausea, get some Clove gum, Amazon sells it.

      In the summer I take Zyrtec, sudafed, and sometimes for dizziness, prescription Meclizine, which is GREAT, I can even read a map while my husbands driving, and I don’t feel like I need to throw up.

      I know where you’re coming from, so I hope my drug list helps.

  68. laurie roberts says

    If you haven’t had genetic testing and don’t know if you are COMT V158 positive, then according to Amy Yasko (expert on nutrigenics) I don’t see how you can know what kind of B12 you need. Double COMT like I am is very sensitive to B12 of any kind and I can only use Hydroxy and or Adenosyl B12. On top of that, if your lithium is low, any b12 you take may not be available since lithium is thought to transport it. She says find out your lithium levels through hair metal analysis to determine if you need to get that balanced before moving onto B12 support. Google her protocol for autoimmune, autism , chronic disease……it is based on your genetics…….otherwise you are shooting in the dark on this stuff !!!

    • Madge says

      I am not sure that I agree with this. One of the reasons that people think that they do better on the OH/Ado b12 mix is because basically the OHB12 is not really working and for good reason. They can’t reduce the OHB12 to turn it into MeCbl. Even the science doesn’t support the idea that you won’t do well on MeCbl. It now looks like many of these people need riboflavin (as FAD or FMN) as it is used in the enzymes that are involved in breaking down adrenalin and histamine using SAM. If they are hypothyroidic or have low riboflavin then they appear to be bad responders to methyl, as they can’t make FAD, and so can’t inactivate DOPA, histamine or adrenalin once it is stimulated. The whole hypermethylation story is unproven scientifically and has not even a rational reason to be right.

  69. Ronne says

    You all need to go on the internet and look up Methylation Cycle/Methy B12/Methylfolate. You will get tons of information about brain chemistry cycles that involve B12 and folic acid. You may want to get a genetic test done (you can self order thru the ” 23&me” website for $100). You will get a report of genetic deficiencies, but you may not know how to interpret it, so It would be best if you could work with a Dr (MD and or homeopathic) that is aware of “MTHFR” (the genetic defects that cause B12 & Methylation deficiencies). Having said that, most main stream Dr do not even know about this and cannot (will not??) help you. I have seen a neurologist, an ENT, a cardiologists and a family practitioner – non of which had a clue how to help me. Note: If you are not biology or chemistry minded it may seem overwhelming at first, but there are many articles written by laymen that are easier to understand. My main Symptoms: Light headed every day for 2 years, feet burn at night, brain fog. balance issues. Hope you all find answers to your problems.

    • laurie roberts says

      Genetic Genie on the net can decipher your 23& me test and puts it in a understandable format . I think they ask for a small donation for the service but ($15 ?) but it was well worth it.

    • Madge says

      Hi Pat,
      Yes it is a pretty good book, but probably her web-site has quite a bit of additional information. She doesn’t appear to have linked the deficiency to variants in methylation related enzymes (MTHFR, MTRR, etc) nor to the prevalence in CFS. Good on her for trying to make the population aware of the problem. Now if you can just get the doctors to be aware many of us will be better off!

    • AnnF says

      Her book is o.k. to show to your doctor if he is not a believer in the harm low B12 can cause, but frankly, she’s preaching to the choir. I really don’t like the fact that she tells people to wait to take B12 until they get a diagnosis from their doctor, when her main complaints are that doctors won’t listen, and that the tests aren’t definitive.

      If I hadn’t started taking B12 on my own 3 years ago, I don’t know where I’d be — probably in a wheelchair waiting for another test to come back. Seriously.

  70. sgujar says

    Hi,chris i had vitamin b12 low when i had my total blood count 6 weeks back and it was 186 only as the normal range is between 198 and 500 .I started having symptoms like buzzing in my ears or brain,memory problems,thinking problems,shortage of breath,lack of energy.Doctor suggested me jamieson sublinguil 1000 which didnt really helped me of which i use to take 2 daily almost 6 weeks still have neuorological problems,now i have switched to ola loa b12 with hydroxycobalamin and folic acid also magnesium bisglycinate plus ,i am not sure if its really gonna help me its affecting my social life including my exams,plz suggest me something as my main problem is neurological.

  71. ed_pillar says

    “This is especially important for vegetarian or vegan children or pregnant women, whose need for B12 is even greater than adults.”

    You do realize that pregnant women are adults, right? It would probably be prudent to re-word this sentence.

  72. Ed says

    There are plenty of sources of B12 for Veggie and Vegan eaters. I hope you did not deter anyone from their own choices by stating false information as fact.

    It’s also stated that vegans and vegetarians live an average of 10 years longer than meat eaters. Doesn’t seem like a B12 deficiency to me.

    • AnnF says

      Ed,
      What are the vegetarian sources for B12, because I’ve never heard of any. Also, what studies show that vegans and vegetarians live longer (and hopefully without more problems) than meat eaters?
      This isn’t meant to sound confrontational, just wondering.

    • Madge says

      Ed, I don’t know that anyone would agree with you on this. Even meat eaters can have trouble getting enough B12. For instance you would need to eat 4 lbs of chicken to get your daily allowance and up to 10 eggs. As for non-meat sources, the only one of any note is mushrooms, where you would need to eat a whole room of mushrooms to get your daily allowance. Other “supposed sources” have generally been found to be due to bacterial contamination, or shrimps (in the case of seaweed). Having had to deal with someone who had B12 deficient dementia I am very careful about dietary B12 intake.

  73. Chris says

    I’m a vegetarian and also use a proton pump inhibiter, so that may likely be the cause. I saw the Dr. today and he was pretty surprised it was so low so he ordered another test to make sure. We’ll wee how that comes back. He mentioned that there is a nation wide shortage on B12 injections and said that the nasal spray may be the way to go depending on how the re-test comes back. Anyway have any experience with that?

    • Madge says

      Hi Chris, a double whammy. PPI’s are known to cause B12 deficiency, put that in with a vegetarian diet and you would have to have a miracle not to be deficient!!
      I wouldn’t bother with the nasal spray, they are an experiment and a way to get around a couple of patents, all they do is slowly dribble the dose down the back of your neck slowly into the stomach.

      • Chris says

        Thanks for the information. I guess I’ll try to call around and see if I can find any place to get the injections and if so try to convince my Dr to prescribe them. Is it possible to get injections online from a reputable place if you have a doctors prescription. I’m in a fairly big city, but in case I can’t find any.

  74. Chris says

    Well, I ended up going to get the B12 test on my own and figured that if it came back on the borderline I might opt for getting the MMA on my own as well. The B12 blood test came back at <31, so it doesn't seem to be necessary to do the MMA. Seems pretty low. I'm going to see my Dr. to get his take.

    • Madge says

      Well Chris, looks like you now know what is wrong. Your levels should be above 300, so you have a long way to go to get back to that. Now you just have to work out why it so low, and then how you are going to get your levels up and stay up. This will depend a lot on why you are low.

  75. Jacquie says

    I have b12 deff, fibromyalgia and like another person on here I cannot raise my left arm above my head anymore and now have pain in my left foot as though it’s broken, but doc says it is poss plantar facilitus. I am about to have a active b12 test.

    • AnnF says

      Jacquie,
      If you already know you have B12 deficiency, why are you going for a B12 test? No matter what the test says, I would recommend taking two 5,000 mcg sublingual b12 tablets (1 in the morning and 1 at night) each day and see how you feel after a month. Also, see if you are low in D, and take that if you are, but wait for the test on that one because too much D can cause you harm. I was REALLY low, and the doctor prescribed a super-duper D3, but it upset my stomach so much that I had to stop. I tried lower dose over the counter pills, but they upset my stomach also. I then tried Vitafusion gummies, and found that I can tolerate those. Look for low Zinc and Magnesium as well.
      I have been taking Amlodapine and Hydrochlorathiazide for blood pressure, and have had a lot of problems since I began that didn’t go away after taking my vitamins. I decided to lose weight, exercise, and step down from the pills, and am now taking one half dose every other day, and have noticed that I feel a lot better. I haven’t lost the weight or exercised, so my BP will more than likely go up when I’m done with the pills. If you take medicine, it could be that, but don’t be like me. Make lifestyle changes (I know It’s hard when you really, really don’t feel well), and plan with your doctor so you can get off any meds you can.
      I have been taking Unprocessed Apple Cider Vinegar in water with honey every night, and when I can’t, I take an Apple Cider Vinegar Pill, and it seems to help.
      Some people have tried Royal Jelly (bees make it) for fibromyalgia, and they say it works, but I’ve never tried it for anything, so I don’t know how good it is.
      Good Luck!

  76. Chris says

    I’m going to go to a local lab to get a B12 blood test and a urinary MMA test myself and bypass the Doc for now and then decide how to proceed. After looking at all the posts in this blog, I’m confused on what to use as a value for the MMA test to determine if I should pursue B12 shots. Do you just follow the guidance on the report or is there some other level I should use?

    Also, I take a daily multivitamin and separate D vitamin and a B-complex vitamin (just the recommended one a day dosage). Is it recommended to not take these prior to the tests?

    • AnnF says

      Chris,
      It’s good that you are taking the B-complex, but they can mask B12 deficiency, especially if they contain Folic Acid. I would stop taking them AT LEAST a month before the test.
      Are you in the U.S.? You can go to a lab without a doctor sending you? Also, I have asked for an MMA test, and other B12 tests from three doctors, and they don’t know what they are.

  77. Keith jones says

    Hi Chris

    I have been Diagnosed has a
    Having a stroke, vascular diamentia and the onset of Alzheimer,s . My B12 has been low for many years and last checked was 240 My sister has been diagnosed with pernicoi

    • Madge says

      Hi Chris, you need to really address the deficiency. Many studies have shown that you would need high dose repeated injection or the B12 oils to start to repair the damage to your neurons. Nerve velocity measurements suggest that it will take at least one year, but if you are really, really bad it will possibly take longer. Sounds like you may have some genetic predisposition to B12 deficiency. Do you know if you have mutations in your methylation associated enzymes?

  78. Tanisha says

    Hi Everybody,
    I am from India, Female 41 , 65 Kg Weight , 5′ 5” got recently tested vitamin B12 with 156 pg/ml (Picograms per milileter) ?
    How much medication of Methycobalamine Injection or HydroxyIcobalamine Injection I should take per day till how many days for replenishment?? What happen if i took excess medication??
    You can advice me any other options if necessary…
    Looking forward for your reply.
    Tanisha
    India

    • AnnF says

      Hi Tanisha,
      In December 2011, I diagnosed myself with low B12 after reading an online article, “Antacids Ruined My Life”. For the longest time, I had severe fatigue, but by 2011, my hair was falling out; I had extreme memory loss and brain fog; my sight was weird, I could see, but yet couldn’t see was how I described it; my periods were so painful, that I would double over and wouldn’t be able to a stand straight for 5-10 minutes; I was always dizzy, and had a severe attack of Vertigo the year before; my feet hurt as though I had Plantar Faciitis, the pain then went up to the back of my leg to my knee — I was in pain at night in bed, and during the day, I could barely walk; and everything in my life started to overwhelm me, even putting up the Christmas tree was too much for me.

      After the article, I started off with the sublingual cyanocobalamin — 4 pills of 5,000mcg each. I took 2 in the morning and 2 at night. Before 2 weeks was up, my feet and legs were much better, and by the time 1 month had passed, most of my symptoms were either gone, or much, much better. I then switched to the methylcobalamin at the same dose. There is supposed to be no limit to the amount of B12 one can take, but it’s also processed by the liver and goes through the kidneys, and the dose I was taking was high, so for my own peace of mind, I tried lowering the dose, but each time, the pain in my feet came back instantly. By about December 2013 (2 years), I was finally able to lower it to the one 5,000mcg pill. I tried to lower it to 1,000mcg, but the foot pain returned after 2 weeks.

      I still have a few slight problems, and the fatigue, though better, never did go away, but I am taking Blood Pressure and Water Pills which have quite a few side effects (like fatigue), so I am trying to slowly go off of them, too.

      I hear the B12 injections are better than the pills, but my doctor won’t give them to me. If you watch “Living With the Fog” on YouTube, they say that every person is different.

      I’m Female, 51, 65 Kg (if the calculation on Google is right), and am 5’3″.

      Good Luck, and Be Well.

      Ann
      U.S.A.

      • Madge says

        Hi Ann, it sounds like you are experiencing the problems with oral tablets and B12. The amount that you absorb is only a tiny fraction of the dose that you take. This means that whilst it can help with some of your symptoms it won’t really make you better. You probably would be better with the product from b12oils.com which is a topical oil which gets a much higher dose in. I have found it marvellous. Good luck.

        • AnnF says

          Madge,
          Many of my extra problems are definitely being caused by my BP meds, but I will try the oils, and see if they do better than my sublinguals. Thanks.

      • Vin says

        Ann – I had similar symptoms.
        For your eyes, I think you should try vitamin B2. That gave me amazing results. My dry eyes and eye fatigue has improved significantly. I tried Natures Plus B2 or Solgar, about 50 to 100 mg initially and can lower the dose later.

        • AnnF says

          Thanks for the advise Vin, but my eyes were better after I started the B12. I also take a B complex, and vitamin D gave an extra boost.
          I am over 50, so I need the drugstore readers for reading, but only 1x.

        • AnnF says

          Vin,
          I think I will look into the B2. My eyes aren’t as dry as they used to be, especially since I stopped taking my BP meds, and I don’t need my allergy medicine this year. The dry eye flare ups still bother me, and I came across your post again, so I will try the B2 out. Thanks.

      • Kim says

        AnnF, you described everything I have been dealing with lately including the plantar faciitis, and ever since I was diagnosed with Fibromyalgia in 2010. The doc had put me on Cymbalta which gave me intestinal issues so I got off it and Ive been struggling for 5 years now trying to self treat myself with organic foods, mineral supplements and vitamins. None of the doctors ever thought of B12. One mentioned I had Low D3 but never stressed the importance of it. But NOW after having my blood work faxed to me this time around from being sick and tired, of being sick and tired and in constant pain and overweight, I started googling each result. My MCH was high indicating B12 deficiency and megloblastic anemia? And my D was showing as <4.2 how does one just shrug their shoulders to these results knowing I have these symptoms of fibro, fatigue, unable to lose weight no matter what I did, and then digestive issues that went from 5 years of constipation to suddenly diarrhea! I recently ordered a multivitamin patch since I realized I cant digest anything correctly at the moment, which includes 5000iu D3 and 1000mcg B12 AND a straight patch of B12 5000 mcg only. Directions say the patch is supposed to be used once per week but Ive been wearing one per day since I got them. Seems to be helping but I need more to recoup faster so maybe 4 patches a day (20k mcg) on me would help for a couple months? What say you? (Although they are not cheap they are convenient and I might be able to talk them into a bulk discount)

        • AnnF says

          If you can’t get the B12 shots, I think you should try the oils that a few people wrote about on here. I keep saying I am going to try them, but I haven’t yet, just because I’m a little confused about which one to use.

          As for D3, spend time in the sun, drink milk if you can, and try the GummyVites D3. I wrote before (I wish we could sort the posts by name at least), that my doctor was concerned about my D levels, and prescribed, I don’t know, 15,000 units or more of D3, but the pills made me sick, so I tried a few OTC brands until I found the GummyVites. I have been able to tolerate all the vitamins I take, except for the B complex, and that is not so bad if I take it with milk, and especially with food. Make sure you take probiotics.

          I did have the opposite issues in one department. I had diarrhea all the time until I started the B12, and now I am constipated. The Magnesium really helped, but now I can only take one a day, and I know I really have to exercise.

          I think that most of the doctors people go to are competent, it’s just that they have been trained in a certain way. It doesn’t help when stupid reports come out that state that vitamins don’t help at all. How can they quantify something like that?

          Anyway, look at the list of vitamins I put on here in a few places. If you can’t find them, I’ll write them down again. Try for the shots. You never know. Don’t avoid oils and fats — use the whole egg, drink whole milk, use mainly olive oil — imported if you can afford it, I like grapeseed oil as well, try to buy as much organic/non GMO produce as your budget will allow, use raw honey daily, and drink diluted unfiltered apple cider vinegar daily. Get off the coffee if you drink it!

          It takes a long while, but one day you’ll notice that you are starting to feel better, and that really gives you a boost. Good Luck!

  79. Danielle says

    I have been trying to sort out my symptoms and have suspected everything from metal poisoning to Lyme and co-infections to Candida and leaky gut. It started after a tick bite, birth of my first child, and amalgam fillings (8 years ago). I had extreme stiffness in my ankles upon waking in the morning. Also, pain in my spine upon jarring. Lyme and lead tests were normal but SED rate was 35.
    Over the years, I developed sharp pains in my neck (thyroid), heart palpitations, chest pain, nose burning when coughing, and more. Last year, after the birth of my 3rd child, IV antibiotics during labor (another tick bite during pregnancy), and metal ortho. braces two months post partum, I suddenly noticed that I was having problems with balance. Subtle, but noticeable. Also, for about two weeks after getting the braces, I had extreme fatigue upon waking and my feet were sore at night and upon first steps in the morning. I didn’t pay much attention, because it subsided. But, then general fatigue and other symptoms began to surface. Shortness of breath, sharp ice-pick head pains, temple tension, facial fat loss, intestinal and eye muscle twitching, then all over muscle twitching. Then I began to panic and woke up with one leg burning and creepy crawly sensations. Cold sensations, tingling, sound sensitivity, smell sensitivity, hyper-nerves and more. It would take pages to describe it in detail. When I had the braces removed, I had instant relief, but have been struggling with finding an optimal balance with diet, supplements and detox. My SED rate has remained around 28-35. My B12 was low normal. 312, I think. My Vitamin D was 28. I have had a few amalgam fillings removed and the supplements and the toxins caused tremors, increases sound sensitivity and brain snapping sensations. A month of Doxy and no supplements solved the brain snapping and sound sensitivity, but the muscle twitching persisted. It has been the most persistant and hard to deal with symptom. Heart palpitations and chest pains and upper torso pains, are the others. Magnesium and B12 has recently almost stopped the twitching, but weakness and sore muscles have started. Also, I have noticed a strange reaction to alcohol for years. I get weak all over my body within seconds of sipping wine. Any insight about what tests to order, or supplements to try would be greatly appreciated. Can I expect to get well?

    • Danielle says

      I should also mention that the supplements I have been taking include MethylCobalamin B12, Vitamin D 1000, Glutathione cream, Pectasol C, Fish Oil, CoQ10, Magnesium w/wo calcium, Pau D’Arco. Grapefruit Seed Oil for a short time.
      I have only taken most supplements for a week or so at a time, with a week or so off. Busy life, makes it hard to be regular with anything, and also the flair up of symptoms can usually be attributed to something I am taking, but on so many things, that I have a hard time knowing what.
      Yesterday, I took the b12 twice and today my left arm and hand feels like the blood supply has been cut off and I have a cold sensation in it. I noticed threads about potassium, so yesterday and today I ate a banana. Hasn’t helped, yet.

    • AnnF says

      Hi Danielle,

      First, what is Doxy and SED?

      Tests — Lupus, there are other tick diseases besides Lyme, MS, check all your endochrine glands, your Lymph system, Hodgkin’s and non-Hodgkin’s lymphoma, diabetes, liver, kidney, HEART, lungs, particularly asthma, brain, and D3. Long list, I know.

      If you look back, you might remember signs of B12 deficiency, but never realized. For me, you know the end scene from Queen of the Damned, where the vampires are walking in slow motion, while everyone else is speeding? That was me as child, and still is as an adult. I can relate to the tick bite and childbirth (though tick bite just kind of made me more aware. Seriously, I do think what you have is B12 deficiency. So many things — EYE TWITCHING — sound exactly like what I was going through.

      B12 deficiency really sneeks up on you. I remember whem I was 19, feeling slower than I had been, then at 30, complaining to others that I felt so tired, and that everything just seemed so hard, and them saying that everyone felt like that, and me saying to myself, “I don’t think so..”. At 32, even though I was eating the same or less, and exercising more, I gained so much weight in one month, that none of my clothes would fit. Slowly, until, like you, everything started breaking down. I laughed when you mentioned the alcohol, because the same thing always had happened to me.

      My advice to you, stick with the vitamins I listed a few times now. Do not take fish oil. Take cod liver oil. Lately I have been taking Carleson Norwegian Cod Liver Oil. I take a teaspoon a day, and it doesn’t taste fishy at all. Stop taking the more “different” supplements. I have found they are not worth it, and the grapefruit seed, I love grapefruit, and eat it a few times a year, but really, it effects too many things, so I am very wary of it.

      I think you know this, you already said it yourself, you have to stick with it. A banana a day is a very good idea, but a banana EVERY day. I’m a housewife, so I can make sure I take my supplements every day. I still can’t sleep too well at night, but I can take a long nap during the day. It makes me anxious because all the housework piles up, then I spend my well time playing catch-up, but at least I am lucky because I can be flexible, and let work pile up. I know most people can’t let things slide,or work around illness, but you really have to try to do what you have to in order to feel better.

      Good luck, and write back in a few months to let us know how you are doing.

  80. Amy says

    I got b12 shots monthly for 3 years because pills didn’t help. Then I was diagnosed with Celiac disease and eliminated Gluten. I now absorb the 1000 milligram b12 pills. I am not as anemic as I was either. I had no classic symptoms of Celiac. Luckily my hematologist had me get a colonoscopy/endoscopy. I do miss the shots though. I felt great for a few days after.

    It took a long time to get diagnosed with both Hashimoto’s and Celiacs. A lot of doctors told me I was depressed–made me feel great–until I started with the numb feet and hands. Be persistent! Ask for tests! The blood test for Celiac disease said I didn’t have it, but the biopsy confirmed it. Because of lack of symptoms I would never have had a correct diagnosis.

  81. Jenn says

    this article would not have helped me one bit.. I admit I am tired and maybe missed it..but what about the genetic mutation where the body does not convert B12..which I have. I was taking tons of methyl b12..like 50,000 iu a day ( no you cant overdose on it I work with a savvy nutritionist along with a stellar functional MD team ) , my blood test showed high levels..( my NASA dr says the typical blood test is useless and pulls a different test ) ..now I am on methyl folate.

    • Madge says

      Hi Jenn,
      Which genetic mutation do you have. Do you know as it makes a difference as to which bit of the intracellular processing is incorrect? If you are still tired and yet are taking 5MTHF and methylB12, you probably should also take Adenosyl B12. It helps processing of fats and odd chain amino acids for energy. Lack of AdenosylB12 also leads to mitochondrial disease. Have you had your vitamin D levels checked? Low vitamin D is also associated with poor mitochondrial function. This would also lead to being tired, lacking energy, etc. Now if you were hypothyroidic on top of that you would be very low in energy.

  82. Brenda says

    I have been getting a B12 shot since April 1996 every month. I had to move recently due to my company closing and offering relocation. I don’t understand as to why each time I move the new doctor I find wants to take me off the B12 shot when my original doctor stated I would need it the rest of my life. So the new doctor had me do lab work from the last time I had my shot which was 1 month and 1 week from my last shot I was only a week overdue as I go the same time each month first tuesday of every month and my levels showed that I was in the normal range so he’ll want to discuss stopping my shots.

  83. Patty says

    There are lots of people that are probably B12 defient. I was diagnosed in my late 30’s and have nerve damage in my feet and lower calfs. My nerologist diagnosed me. He only found part of the puzzle. I was recently diagnosed with a gene mutation MTHFR A1298C which is part of the cause of the B12 deficiency. It also has to do with not being able to process Folic Acid and methelation.

  84. koel says

    Is taking 1500mcg of mecobalamin safe while in ttc phase.?During my miscarriage I was diagnosed with b12 deficiency but it was not a genetic one.I have been taking 1500mcg of mecobalamin for the last 3 to four month should I continue it while ttc?Please advice.

  85. Summer says

    I visited with my family doctor today because I’ve been feeling crummy lately — hot and cold flashes, confusion, and other mental symptoms, like not being able to articulate simple thoughts, stuttering, forgetting the route to a familiar destination, etc. Just got my labs back and my B-12 level was 325. I’m in my 50’s, happily married, working full time in a job that requires sharp analytical thinking and we have an elementary aged child. Feeling befuddled and inept is not “normal” for me, but 325 is a normal B-12 level according to my doctor. What should my next step be?

    • Madge says

      Hi Summer,
      Serum vitamin B12 is not necessarily the whole answer, although it is a good start. For you mental processing you need methylation, which requires both folate and vitamin B12. You could get your intracellular folate analysed, as this is pretty indicative. Also you need your vitamin D levels to be above 100. All these add to methylation and mitochondrial function.

      • Lynn_M says

        Madge,
        Since the followers of this forum are international, sometimes this creates confusion when referring to lab values. In the USA, the Vitamin D form of 25(OH) D is specified as ng/ml. I believe the Australians use nmol/l. 2.5 x ng/ml = 1 nmol/l. >100 ng/ml is considered excessive, so your recommendation of >100 could get someone in trouble if they don’t know what units you’re using.

        Furthermore, based on new Vitamin D research, Chris Kresser has lowered his recommended Vitamin D level down to a range of 25 to 50, with a target of 35. He explains why here: http://chriskresser.com/surprising-new-vitamin-d-research-the-myth-of-multi-tasking-and-how-the-internet-is-rewiring-our-brains.

        • Madge says

          Lynn,
          You are absolutely right about the confusion with units. I don’t know why, but you would think that the world could agree on units.
          As for recommendations, I don’t know why Kris would reduce the recommended values. Experiments with mitochondrial energy production have shown that it still increasing above 100 nmol/L (40 ng/ml, 16 IU/ml) .There is some info at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/ . I note there that they are suggesting that the maximum you should have is 125nm/L (50 ng/ml).

          • Jenn says

            Chris Kresser does not know it all..I glean from him what I don’t get from my functional MD top docs..Vitamin D council is increasing their RDA.. I take 5,000 iu a day just to be in range..verified via genomics testing that I don’t convert it well.

      • Lynn_M says

        I forget to say Chris’ target range recommendation for 25(OH) D is 25-50 ng/ml.

        Summer,
        The Japanese use 500 as their lower threshold for normal for Vit B12. The USA lower limit for normal is much too low.

        Furthermore, the Vit B12 test measures the total of both the active and inactive components of Vit B12, the transcobalamin and haptocorrin, respectively. Your level of 325 doesn’t tell you if you have enough of the active transcobalamin.

        I suggest you start supplementing methylcobalamin and/or adenosylcobalamin and see if you feel better. You can get them in sublingual forms. Avoid pills – because B12 is such a large molecule, only 1% of it is absorbed orally. However, the product I have found that gave me much greater benefit was a topical oil from b12oils.com. It comes in a light shielded pump. One pump dispenses a bright cherry red oil-based liquid that rubs into the skin in less than a minute.

        Your symptoms could well be due to something other than low B-12. But taking supplemental B12 and possibly a folate like Metafolin or L-5-MTHF (not folic acid) will help you rule out if a lack of it is the culprit. Your body will excrete whatever it doesn’t need, no harm done.

        • Greg says

          I agree with both Madge and Lynn about the unit story. Not so sure about the vitamin D levels though. There are many studies showing that you can better resist diabetes and can lower your blood pressure if you have higher vitamin D. Similarly vitamin D is essential for neuronal health, for mitochondrial function and immune function. The problem with ultra high vitamin D can be serum calcium levels. Several studies have used vitamin D at 20,000 IU/day with no side effects. This is further complicated if you have VDR mutations where you may want to consider having your levels at least 100 nmol/L as you are having trouble getting the vitamin D into the cell.

          • Summer says

            Thanks, all, for your response. I didn’t mention in my initial post that both my mother and younger sister are B12 deficient and receive regular injections. When my sister was diagnosed several years ago her levels were close to 0 and she’d already suffered permanent neurological damage. That’s just to explain my quick focus on B12 as a possible cause of my symptoms, especially after finding this article. Thanks again for your good information and suggestions!

      • Summer says

        Thanks, Madge. Just got more lab results back and learned my Vitamin D is 18. My doc put me on 50k 1/wk supplements for 6 months to be rechecked then. He’s still not concerned about my B12, but maybe boosting the Vit D will help. Thanks again for your good advice.

        • Madge says

          Hi Summer, glad that you got some possible explanation for your problem. You should also get your thyroid hormone levels tested as they can also cause problems if you are hypothyroidic, which many woman are (don’t know it is more with women). Not sure if I would be waiting 6 months for the retest. Anyway see how you go. Good luck

    • Patty says

      Summer,
      Get tested for the MTHFR Gene, it has a slew of causes including mis carriages, mental fog etc.

  86. says

    I am sure there is more to the shortage than just one factory closing but CTV reported: “Sandoz Canada had to close a manufacturing plant in Quebec in February, 2012, to upgrade it to meet U.S. Food and Drug Administration standards. The only other injectable B12 manufacturer in Canada tried to pick up the slack from the closure, but there has been too much demand to catch up, leading to shortages across Canada and the U.S.”

    http://www.ctvnews.ca/health/health-headlines/vitamin-b12-users-hit-by-shortages-1.1732525#ixzz30KZxg7zw

    Trouble getting a hold of B12 for himself and seeing stories like this one was the motivation for finding a source and making it available to others.

    Currently we are only offering Cyanocobalamin, but are looking into branching out as we grow.

    As for getting a correct diagnosis – I can only speak for myself in saying it is very hard to get more than 10 minutes with a doctor so it is not surprising it takes some doing to get good treatment!

    • Madge says

      Thanks for the update. At least you can still get the topical Ado/MeCbl mix from b12oils.com definitely a better product than cyanocobalamin. You might want to try that.

  87. says

    For full disclosure I’ll start by saying I have a business that sells injectable B12. There is a shortage in north america, so we have open up to sell off shore B12. If you are under the care of a doctor and are having trouble sourcing B12 injections give us a try: vitaminb12direct.com

    • Madge says

      hi Stephen,
      Thank you for letting us know. What form of vitamin B12 do you currently sell for injection? In addition, do you know why suddenly there is a shortage of injectable vitamin B12? It appears, if you monitor this post, that it is actually very hard to get Physicians to actually diagnose B12 deficiency. Is this changing?

      • finndian says

        Since most doctors received only about 12 hours of education in nutrition (which they can opt out of) why would you be surprised that Physicians can’t diagnose B12 deficiency? HOW would it change unless they get the education?

        California is the first state in the union to make substantial nutritional education mandatory in its medical schools and that was as of January 1 of 2013!

        We are living in the dark ages when it comes to nutrition impacting our health. We need to fend for ourselves…. doctors tend to believe only what they learned in school. I guess we all do and thats the problem.

        • says

          My physician completed medical school at least 20 years ago. Just like any of professional, they should be keeping up their continuing education on their own. Everyone here seems to know a great deal about nutrition, and none of us went to medical school. If we can learn it on our own, then so can our physicians.

  88. WF says

    Recent GP blood tests show I have low B12, but a test for antibodies proved negative. I have none of the usual causal factors, although my alcohol consumption is higher than the recommended levels. My liver functions test good. I have suffered depression and severe anxiety for many years, and in my 50’s have exhaustion, muscle weakness, poor memory, etc. I am furious that when diagnosed with iron anaemia three years ago, no B12 test was done. I now have those years (and maybe many years before them) in which I may have been accruing neurological damage, and fear this will now predispose me to dementia. I have my present GP (retiring) to thank for investigating my symptoms and discovering my B12 deficiency, although the cause is presently unclear. From my mid 30’s onwards, I drank because I was anxious. I may have been more anxious than average (in the circumstances) because I was low on B12. A dangerous spiral. Why did nobody shoot me full of B12 and warn me about what might be going on? My new GP, consulted today, alerted me to the serious nature of my deficiency, but even she needed to postpone diagnosis until she could take time out to look at possible causes. I await her call……..

  89. Robert says

    I am 47 years old and I haven’t eat animal protein for almost 3 months. I do take Methylcobalamin (Vitamin B12) 5000 mcg Nuggets from Solgar .
    I just had my B12 and Folate tested and the results were 711 pg/ml and Folate was 6.0 ng/ml.

    Do these numbers seem good to you? Thank you

  90. says

    Very interesting article on B12. I want to show it to my doc. Can you tell me what the recommended daily dose is for B12? I am 66 years old and I take 2 (500 mcg) of the Wal-Mart Spring Valley brand B12. It is the ONLY brand I absorb and I cannot take the 1000 mcg size, as I do not absorb it. I also take 2000 IU of Vit D daily. My D levels drop every winter.
    Thank you.

  91. Deb says

    I have problems keeping adequate B12. In the past I was diagnosed with pernicious anemia. Recently I had DNA tests and was diagnosed with Hemochromatosis. This is usuallly associated with low levels B vitamins and some of the other symptoms mentioned in this article.

  92. Lynn_M says

    robstc,

    In addition to various blends of adenosylB12 and/or methylB12 and/or hydroxylB12, you can also get a pump of transdermal adenosylB12, all by itself, from http://b12oils.com. Maybe that is the answer you’ve been looking for.

  93. Lynn_M says

    To the webmaster of this site:
    It’s impossible to post more than what fits in the comment box. When I write more than that, everything I had written disappears. I have to refresh the website and then scroll through all the comments to get to the comment box again. It’s like being forced to do short tweets when commenting.

  94. Lynn_M says

    robsct, the transdermoil is available at b12oils.com. HydroxyB12 is not a substitute for adenoB12. After taking sublingual mB12 for years, I felt a real boost when I added subl adenoB12, and even more when I started the transdermoil. With shots, you get peaks and valleys. With transdermoil, you get consistent dosing. Your fears are baseless.

  95. Lynn_M says

    robsct,
    The transdermoil adeno/methyl B12, or hydro/methyl B12, whichever you chose, is theoretically equal in efficacy to subcutaneous injections and probably superior to IM injections. You don’t need a prescription. None of the hassles you report. What’s not to like?

    • robsct says

      Hi Lynn_M. One problem is that I am not familiar with those products and I have a limited budget to be trying new stuff with. I am worried I would pay big bucks for them and they would not work. I don’t mind the shots and it just seems easier to give myself a shot and I’m done. I have read about the patches although I can’t find any adeno patches. http://www.drdavidspatches.com/b-12-mega-patches/ I would try these other products if I can’t get the shot form. I’d appreciate any links to products you like so I can see what’s available.

  96. robsct says

    I have had a heck of a time getting the B-12 injections I need after the cyanocabalimin stopped working. I have decided that my liver has stopped using it because it can no longer remove the cyanide molecule and convert the raw B-12 into the two usable forms. I have gotten the methyl and tried it but it doesn’t give me the energy boost I used to get. I was told I needed the other form also which is adenosylcobalamin but you can’t get that in an injectable form in the US. I found out from a compounding pharmacist that some doctors are using hydroxycobalamin with the methyl for their patients. But I am having a hard time getting my dr to write the necessary prescription for it because she thinks it’s a restricted substance in the US also. The pharmacist says it is not. When I finally get it and use it I will report on how it works. I hope it solves the problem of my low B-12. Since I have had the cyanocabalimin stop working I have had most of my symptoms return over a period of several months (as I have been getting the methyl and trying it) and I can hardly drag myself out of bed again like it used to be. I don’t want to use oils, creams or patches or sprays if I can get shots.

    • Greg says

      Hi Robsct, very interesting about how the cyanocobalamin is not working. I have been following another discussion on another site and this seems to be more common than doctors realize. You are right about removing the cyanide molecule, you need a strongly reducing environment to reduce the cobalt from Co(III) to Co(I) oxidation state. If your intracellular glutathione levels (GSH) are very low you can’t do this. Now it is quite likely that you won’t be able to do this with the hydroxycobalamin either. The problem you will have is that unless your doctor is “hip” to this, you are going to have problems as when they measure your serum B12 levels they will now appear normal as they don’t differentiate what type of B12 you have. To get your energy boost you will need both the adenosyl and methyl (the natural forms) forms of B12. If you want I can try to find the scientific references to support this. It may help you deal with the doctor, although I am not sure if they will allow me to post them.

      • robsct says

        Hi Greg, I’ve been told by the pharmacist at the compounding pharmacy I am dealing with that the hydroxycobalamin does not have the cyanide molecule and some drs are using that with the methyl because the adenosylcobalamin is not available even with a prescription. If that is the case then I don’t see why my body wouldn’t be able to use it. I’d appreciate any info you have on this issue. I am going to try it if I can get it.

        • Greg says

          Hi Robst, you raise many issues with your question. In Europe, both methyl and adenosyl are freely available as food supplements, injections etc. People are moving away from CN-Cbl as a high percentage of people can’t use it. Whilst OHCbl can be used by the body in normal individuals, in those that are really deficient and have low GSH levels it is very poorly used. Further it competes for uptake into the cells making the situation worse. The actual analogues you use in the body are adenosyl and methyl forms of B12. These are the forms that you get from food. They are both available from b12oils.com.

    • Madge says

      Hi Finndian,
      If you check/search on the site you will see that this has been reported before. It is not well known, but apparently it is reported before. Does anyone know why it causes it?

  97. Alicia says

    i just got my lab results back from the Dr. and they said i was “low” on my B12. i didn’t get the numbers, however, after reading this article i decided to get the shots. i suffer from occasional migraines mostly but also feel fatigued throughout the day. I am 30 years old and seem to have those “senior moments” quite often as well. i also have had random blackouts- i suffered one just a few days ago, don’t remember a thing but i banged myself up pretty bad. i’ve had blood sugar and thyroid tests- and blood work comes back normal except for being low on b12, vitamin d and sodium. Are blackouts/ fainting spells another symptom of low b12? i even got a cat scan and they didn’t find anything.. i have also been consuming frozen liver “pills” daily and i have been pretty 80/20 paleo for about a year.
    do you thing the injections will be a good avenue to try?
    thanks for your time!
    alicia

    • Madge says

      Hi Alicia,
      If you have been eating paleo and eating liver, it may be that you are having absorption problems, maybe you have pernicious anemia, which would mean that you can’t absorb B12 well. You should get some relief from the injections, but if you have PA you will have to take them for life, or get onto the B12 oils. Let us know how you go.

  98. Christine says

    In addition to the above comment… I do suffer from depression. Beyond those two things those are my only real issues.

  99. Christine says

    Please help with advice! I am 45 years old. about 5 months ago I had the feeling like something was in my eye. After a few weeks of pain and irritation I went to a cheap eyeglasses store (the kind in a strip mall) for a $20 exam in hopes that the DR. could flip my eyelid and remove the malady. 5 hours, 3 doctors and 2 clinics later I have a diagnosis of optic neuritis. Fast forward to now I have had a clean MRI and a second opinion ruled out optic neuritis. I do not have MS. My B12 was 165. The neurologist ordered an injection. A few days later they called and said that it was a “false positive low”????? and supplements from now on. Pain persists and I had another injection but requested that they check my B12 beforehand. LOW! Although I don’t know the number the just called and said that it was low. I just started amitriptyline a few days ago. I would like to tear my eyeball out at times. I take a handfull of over the counter pain meds which will curb the pain for an hour if I am lucky. I feel like my life is being taken away from me. Will this ever improve?

    • Tracy says

      I would go online and search for a Functional Medicine or Integrative Medicine doctor in your area, or, if you live someplace where Naturopaths can order tests and prescribe meds, go to them. 165 is really low. One shot and supps is not necessarily going to do it. Especially if it turns out you have pernicious anemia which will impede you from being able to absorb b12 orally. Don’t give up. I came back from a deficiency that low and I am doing well.

    • Greg says

      Hi, there is massive tracking of vitamin B12 to the optic nerve. It is sort of obvious because it uses so much energy all day. It is stacked full of mitochondria and thus needs lots and lots of energy. To get all this energy in you need good levels of both adenosyl and methylcobalamin (the two active analogues of vitamin B12). If you search PubMed you will find lots of articles on B12 deficiency and optic neuropathy. In some cases, with the correct treatment the neuropathy is quickly fixed, in many other cases is needs continual high dose treatment. Things that make the neuropathy worse are smoking, vegan diet, diabetes, and elevated homocysteine and MMA levels (also signs of B12 deficiency. Given that sub-clinical vitamin B12 deficiency starts at around 350 ng/L you will have to get your levels up and above that and stable for months to get significant neuronal repair. The caveat is that the B12 levels measured need to be of active B12 – adenosyl and methyl B12.

  100. Jerry says

    I have leaky, gut, celiac and lost 8 feet of small intestine to gastric bypass surgery. I take huge amounts of oral B-12 to just barely keep my serum B-12 in the low normal range.

    I got a new doctor recently since I went onto Medicare with Kaiser supplement. My new doctor won’t give me a new rx for injectible B-12 – says it’s normal.

    Where can I find a doctor or vet to prescribe B-12 injectible for me?

    Thanks

    • Lynn_M says

      Jerry,
      I suggest you try the topical B12 transdermal oil that was developed by Mentor Pharmaceutical Consulting and released to the market a year ago. It is a mix of methyl and adenosyl B12. It comes in a small pump that releases a cherry red liquid that you rub into your skin. It takes less than a minute to be absorbed.

      Look up http://www.vitaminb12deficiency.net.au for more information and use the Contact Us feature to email a request for product and ordering information.

      I have used this product for a year and am very happy with my health improvement. This product is comparable in effectiveness to subcutaneous injections of B12, and provides more even availability of B12 than IM injections. No prescription is required. It comes from Australia, so one downside is higher shipping costs.

      • Madge says

        Cruising around on the web, I have that the product has recently become available through b12oils.com . The one you want is the adenosyl/methyl mix. I too have been using the product a year now and it like Lynn, I have found it very good.

  101. Mike S. says

    @KMBSM – I’m very sorry you had to suffer so long before getting a proper diagnosis.

    You should look into the “active b12 protocol”. (Do a search on Google.) There are discussions at formus.phoenixrising.me. Although this site is primarily focused on CFS, you should find kindred souls with similar experiences.

    There’s another blog post about B12 on Chris Kresser’s site that you should also check out: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency .

  102. KMBSM says

    Hello, I am so happy to have found this website, for years I’ve been seeing a neurologist who knew me when I first walked into his office with a cane, then onto a walker and now a wheelchair. He knew that I had a lesion on my spine, that my B-12 level was low, kept saying that I might have MS come back in three months. I , like many others, trusted that the doctor knew what he was talking about until I questioned why he wasn’t looking further with testing, second opinions, etc. I finally on my own made a decision to get a second opinion, I went to a neurologist at a major hospital in a major city who sent me for more testing, CatScans, MRI’s and most importantly numerous bloodwork testings, some of which the lab technician never heard of. Within a month and a half after years of searching, this neurologist made the diagnosis of severe B12 deficiency. He said that unfortunately he couldn’t reverse the damage that was done to my spine, my whole left side is weak, similar to someone who has had a stroke or possibly MS. I have been hoping to find a support group to be able to share experiences and hopefully to help each other to learn more about this condition and so that I can help someone so that they don’t have to suffer the same way that I am. The only other website that I have found besides this one is in England. I am 63 years old and am hoping to not only learn more to help myself but also to help others. I feel that doctors should add B-12 testing into routine bloodwork testing.

  103. Peace and Health says

    You stated that many Paleo diet followers you see who eat meat 2-3 times a day are B12 def. Why are they not added to the list of groups of people who are at risk of being B12 def?

    • Mary says

      Because unless they have pernicious anemia, like me, they are not at risk. However, having a diet that does not contain viable B12, like vegetarian or veganism, means they are.

      • Madge says

        I would be quite interested to know why people on a paleo diet would be deficient, unless it is lack of folate. Is there something else we are missing

  104. dkaj says

    Are they checking folate also?? The two work together. Also, do you have any integrative or natural path doc’s in your town that are more well versed in B-12. This may be the route you need to go. Sometimes, hormones can cause the tiredness also. Have they run full thyroid panels on either of you. T3-T4. Chris Kresser has info about thyroid issues on his blog also. Either or you loosing hair, having extreme pain with menstal cycles, cystic acne, and etc. These can be all signs of thyroid issues also if b-12 is coming up.

  105. Aleatha says

    I was wondering if the numbers from b-12 blood tests are the same from the U.S. to other countries?
    My first test was 140, five years ago. I moved and got a 195, four months ago. (I live in the U.S.) My doctors once again only give me a shot 1x per month. I came in with numb, hands and feet, fatigue, shortness of breath four months ago. ( I am the one who insisted on the test in the first place or I doubt it would have happened at all ) I am not a vegetarian so it is an absorption issue. 1 month ago I started 2 tabs of 5,000 mcg methylcobalmin sub lingual tabs daily. After 4 months of shots and adding tabs for about a month I went in to the Dr. again because my fatigue was horrible and numbness and shortness of breath was still happening and I had numbness in half my face. They decided to run a new test even though I told them I just had a shot 72 hours earlier. They said if my levels were below 200 again then I must really be deficient. The Dr. wanted to write a prescription for antidepressants but I said no and asked him why he thought I needed it. He thought maybe I was depressed and that was why I was still so tired. He refused to add an extra vitamin shot in a month but was willing to give me major drugs I don’t need? A few days later the nurse called with the ‘good news’ of the test results.I got a 540. They were very happy with that because I was back to ‘normal’. I held the phone with my hand tingling and wondered “What do I do now?” I was considered ‘all better’ according to the doctor.
    I read other posts here whose doctors are concerned at 490? What am I missing? My 16 yr old daughter was recently tested (again, at my insistence) because she is tired all the time and her number was 290. They told me she was within normal levels and wasn’t deficient and didn’t even suggest I give her oral b-12. She is tired all the time, is a vegetarian since age 8, and has a family history of B-12 deficiency. I don’t get it!!! I started giving her the same sub-lingual for the last 2 months but she is not much better. If they think she is in normal range they will not give her shots. I thought I would try to give one more idea a try so I took in the book ‘Is it b-12 deficiency?.. and asked the Dr. if he would be willing to read the section for physicians and he said yes and asked for a week to get to it. It has been more than a month and I have not heard anything back even though I called a few days ago to ask the nurse to have him call me. If he dismisses what he reads then what? I will go and get my book back in a day or two if he doesn’t call me. I guess I have his answer by then. I have been to a few other Dr.s after we moved here, but so far they all have the same’ knowledge deficiency’ about B-12 deficiency. I have a life I would like to live. I am don’t want to spend precious energy running all over the state trying to find a doctor. Now I am concerned for my daughter too so I can’t give up. I don’t know where to turn. In the U.S. you have to have a prescription to get shots. I can’t just buy them. I have good insurance and pay highly for it and I can’t get a vitamin shot. I am at a loss. What else should I do?

    • Greg says

      Hi Aleatha,
      A couple of answers to your questions.
      No the levels given are different between the different countries. In the US the levels are given as pg/ml, whereas in many countries B12 is measured in pmol/L. Also the range defined as deficient is different. In the US and Australia (and probably NZ) the level of “normal is above 190 pmol/L (~250 pg/ml) whereas is Japan “normal” is above 300 pmol/L. So all very confusing. What is worse is that the level is set by the pathology levels as to what is normal ie what they normally see. It has nothing at all to do with what is clinically normal. Literature strongly suggests that if you are below 300 pmol/L (400 pg/ml) you are sub-clinically deficient in VB12. This they measure by raised homocysteine and MMA levels, which are as a result of deficiency.
      If you want literature on this to show to your GP, please let me know and I can send you the references.
      So, your daughter can be “normal” according to the path lab, but she may not be normal according to the literature, and if she has symptoms that tells you she in not normal.
      Now when you are deficient you can be deficient in two forms of vitamin B12, adenosyl (which gives you energy) and methyl VB12, which helps you methylate). My experience is that people who take high dose methylVB12 still can have signs of VB12 deficiency (low energy etc, ) and do very well if they take topical Adenosyl VB12.
      The next thing is that if you are deficient and take shot of cyanocobalamin (an inactive form of vitamin B12), more than 50% of people don’t respond to it, as they cannot convert this form to Methyl/adenosyl VB12. When you measure the serum, they measure what you are taking, or injected with, BUT this may not be active VB12 (ie Adenosyl or Methyl).
      You can find out more on this at the http://www.vitaminb12deficiency.net.au web-site, and if you have further questions you will find an email contact there.
      The book is quite good, but it doesn’t really go into the chemistry very much, and it is more anecdotal. It is a good start – so too is the web-site.

  106. abch says

    Hi,
    I am a woman, 33 and my vitamin B level is 490. I want to know if it’s low? I was having tinging sensation and muslc weakness in my left leg. After my GP gave me vit B 12 injection, (he said even 490 is in the lower range) I am feeling much better. HThe pain is much less.He’s also given me vitamin b 12 capsules and has asked to get another vitamin B shot in a coupe of days. My question: Is it normal to have such symptoms? And if 490 is low? Please answer. A neruologist (from a hospital which is known to make moeny) suggested a number of tests scaring me it could be MS. I did NOT go for any tests but chose to first meet my GP> The shots have really helped me. Should I still fear MS? Please answer my queries. Thanks!

    • Mike S. says

      @abch – In some parts of the world anything below 500 is considered low. I had symptoms at 480 that were alleviated by B12 supplementation.

      The symptoms you describe could be peripheral neuropathy, which is a common symptom of B12 deficiency. B12 deficiency can mimic other symptoms of MS, so it’s important to resolve the deficiency before considering MS as a diagnosis.

      The book “Could it be B12?” does a good job of explaining how B12 deficiency mimics many other diseases, and how it is often mis-diagnosed. There’s a chapter on MS that you should find useful.

      • Lynn_M says

        The B12 test measures both active and inactive forms of B12. So it could be that a large proportion of the B12 measured by your test was inactive.

        • Greg says

          I agree with Lynn. What you need to have in serum is vitamin B12 bound to transcobalamin II, which is the transport protein required to get vitamin B12 into the cells. If you chronic inflammatory conditions you can greatly increase serum haptocorrin levels, which in turn may lead to “apparently elevated” VB12. The fact that VB12 treatment helped you as far as symptoms go, strongly suggests that you have a functional VB12 deficiency.

  107. robsct says

    I am posting a warning to others here who are searching for B-12 to inject. Not all B-12 is the same. Apparently there are no regulations regarding how much B-12 has to be in 1 ml. I ordered some “cheap” Fenyl B-12 from http://www.defymedical.com out of Tampa Fl. and they supplied the B-12 through a “compounding pharmacy” called APS Pharmacy out of Palm Harbor, Fl. I thought I had found a good price since other online vendors were pricing the same 30 ml bottle at around $170 and this was just $45. The difference is that the cheap stuff is watered down. I got no energy boost or any of the other benefit from the Fenyl B-12. You get what you pay for and I think I got mostly water. I got more benefit from the cyanocobalamin I was using before because it was better quality from American regent through my pharmacy. Buyer beware.

    • Madge says

      Hi Robsct, scanning the site you certainly have been active in trying to track down good treatment. I checked out the site http://defymedical.com/services/89-methylcobalamin-vitamin-b-12-injection which is where they are selling the Methylcobalamin. In order for you to compare the effect to the other injectables you would need to be sure that you are injecting the same analogue of VB12. To get your energy boost you need both methyl and adenosylcobalamin. The form you have just tried is only the methyl form. When you inject CN or OHCbl you potentially can make both forms of VB12, Evidence suggests though, that the conversion of Me to Ado or Ado to Me is incredibly inefficient.
      In short, you definitely need BOTH the Ado and MeCbl forms . This is why the TrandermOIl preparation RedB12 was so good for so many.

  108. angel says

    Yes, b12 deficiency is Not a vegan thing. Most people don’t get it tested. One thing I didn’t see mentioned was that Caffeine can deplete the body of B12 too. Think about all those sodas children are drinking and then the coffee many american’s are addicted to. Maybe considering all this we all should be making sure we get our levels tested.

  109. Hotspring says

    P.S. I guess I am asking for further clarification on the comment that “plant foods said to contain B12 actually contain B12 analogs called cobamides that block intake of and increase the need for true B12.” In another article of yours, Chris, you mention that Kefir has B12 in it. Is this the right kind because it is an animal product? Are you saying that all foods fermented from veggies will deplete B12, or only some of them? Thanks. What does Dr. Campbell-McBride say about this?

  110. Hotspring says

    Can anyone weigh in on how or to what extent B12 deficiency is caused by or can be cured by eating fermented foods? In my limited research into this topic it seems that the gut produces b vitamins during the normal digestive process and that many fermented foods have b vitamins (tho not sure about b12 or other kinds of vitamins). Could the B12 deficiencies so common be the result of the fact that our culture does not consume a lot of quality fermented foods anmore (tho there is now renewed interest)? I realize beer and wine and cheese and yogurt are consumed a lot in this culture, but I am thinking more of kefir, kimchi, miso, etc. Ideas?

  111. robsct says

    Does anyone know where I can buy the Methylcobalamin B-12 for injections in the USA? It’s not very available and it is very expensive. I do want the shots though. Not interested in other delivery methods. I appreciate a link or a phone number.

      • robsct says

        Mike S., My doctor is ok with giving me a script for B-12 injections. I am already doing C B-12 injections but want to switch to methyl B-12 if I can find any and it’s not really expensive. I will google active B12 protocol as you posted and see what’s there. The only methyl B-12 I’ve found is $75 for 10ml bottle. Thanks.

        • Mike S. says

          I don’t have experience with injections, so I can’t recommend a pharmacy. But freddd (on the Active B12 thread at phoenixrising.me) has one or two suggestions for compounding pharmacies.

          If you need B12 in the mean time, I’ve had good results with Enzymatic Therapy B12 taken sub-lingually (?). They’re available at lots of mail-order sources.

  112. Graham says

    I am a vegetarian and have for the last two years become increasingly fatigued, had numbness/tingling in my hands and feet, unable to concentrate, difficulty walking from exhaustion and my legs would drop slightly giving me a funny gait.

    Despite intensive blood work, they couldn’t find anything wrong with me. I accidently took 10 of my wife’s B12 tablets thinking they were Vitamin D tablets. I was great all day, it was only when I went to take them the next day I discovered my error. My wife looked up B12 defficiency and found your site.

    It has been a week now and I am feeling better each day, but can I be checked for deficiency while I am taking 6000+ units a day? Will it cause me any challenge? I haven’t been back to my doctor as I am so angry, they knew I was vegetarian and I had all the symptoms, as did the specialist internist.

    • robsct says

      Graham…just speaking from my experience I was taking 20,000 units of B-12 in tablet (Zipmelt) form per day (4 tablets) and when I was tested for B-12 my levels were off the chart but it wasn’t being used by my body and I felt no improvement. When I finally got my doctor to approve B-12 shots…wow…what a difference. I was amazed. I had increased muscle strength and endurance and all my symptoms vanished. I had been B-12 deficient for years and didn’t know it. But only the shots were effective for me.

      • Graham says

        Thanks robsct, I have increased my intake to 10,000 a day but I am still having symptoms.
        My doctor refused to give me shots as my initial reaction to taking the tablets indicated to him that tablets were sufficient.
        My B12 level was 455, but I had only been off the tablets for 2 days. That was as long as I could handle as my neuralogical symptoms and fatigue returned very quickly.

    • Mike S. says

      @Graham – The test will be skewed by the B12 you are taking. You have to stop taking it for a long time (days or weeks) before your blood level returns to its previous level. OTOH, there are no negatives to taking more B12 than you need.

      FYI – Sub-lingual is more effective than any pill you swallow. And all “methyl B12″ are not the same. For more info and suggestions, Google for “active B12 protocol”.

      • Graham says

        Thanks Mike,

        I did the google search but regret to say I cannot understand any of it. To many unknown terms for me.

        I need it all plain and simple.

        I didn’t even understand your statement “FYI – Sub-lingual is more effective than any pill you swallow. And all “methyl B12″ are not the same.”

        • Mike S. says

          Graham,
          B12 comes in 3 forms – pills you swallow, pills you let dissolve under your tongue (sub-lingual), and injections. The pills you swallow are absorbed at a very low rate – around 1% for anything over 10 ug. Sub-lingual types are absorbed around 10%, if you keep them in place 30-60 minutes. Injectable B12 is 100% absorbed, but it requires a prescription.

          Methyl-B12 (methylcobalamin) and dibencozide (adenosylcobalamin) are the active forms. M-B12 is generally the most useful for to take as supplement, but you may also benefit from taking dibencozide.

          M-B12, and probably also dibencozide, degrades to hydroxocobalamin on exposure to light. So it’s important to keep your supplies in a cool, dark place. Hydroxocobalamin is an inactive form of B12, but it may not benefit you as much as the active form. Cyanocobalamin is B12 with a cyanide atom attached. The kidneys are very efficient at getting rid of cyanocobalamin, so it may not stick around long enough for your body to split it into the usable form.

          M-B12 is a very complex molecule, and it’s hard to test for variations. The general belief is that some sources of M-B12 are chemically similar, but not as active as other forms. There are other people who are much more sensitive than I am to this difference (such as freddd), and they recommend only certain brands because they produce better results. The current recommendation is Enzymatic Therapy brand for M-B12. I take ET M-B12 and Country Life brand dibencozide, although it’s no longer a recommended brand.

          There are a lot of supporting supplements that can help a person with B12 deficiency. Potassium is important. If you develop a muscle twitch or cramps, you need to boost potassium intake, but it’s best to take extra and keep that from happening. Magnesium is important for absorption and use of potassium. Some of the other recommendations are for methylfolate (the active form of folate or folic acid), zinc, calcium, D, E, C, chromium, selenium, TMG, and the other B vitamins.

          I took methylfolate for about a year, but had to stop because it made me feel woozy for about an hour afterward. Not everyone needs it or benefits from it.

  113. dkaj says

    Hi Chris,
    I wanted to see if you have any information on what might cause high b-12 results. My 8 y/o dd came back with a result over 1500. Ped office is not concerned, said they only worry if it is low. My dd has IBS with frusctose malabsorption and she does tend to eat more meat because fruit and veggies are not her favorite. She was also supplementing prior to the test with Re-New life Ultra Flora probiotics (25 billion cells) the week prior to the test. All of her other lab tests have come back normal – CBC and Chemistry panel.

  114. Aleatha says

    Thank You Kris!!! Finally, you made sense of so much confusion and answered questions my doctors couldn’t answer. After years of weird symptoms and no resolve I went into the doctor and spilled the beans about every weird seemingly unconnected symptom I had. I didn’t care if they thought I was nuts I wanted help. I had had tons of tests of all kinds as I went in with my symptoms over the course of several years. Scans, blood work, ex-rays, breathing tests,the works. Not once did any doctor check for b-12 levels! A simple, cheap test! Finally that day with a look of exasperation my doctor decided to see if I was deficient in anything. I was in my late 30’s and didn’t seem to have other risk factors, so she doubted it. My level was 150.I got a call right away that I was very low and should come in to get shots. I asked how often and was told 1x per month. I asked why I was deficient or wondered if we shouldn’t figure out the cause and was told that sometimes when people get older this happens. Older? I was 39! The shots helped but I still had symptoms. I was slightly less tired especially a few days after a shot. I was not told I should continue shots indefinitely. I was not a vegetarian, had not had stomach bypass surgery and was not old, so why? My doctor explained that it didn’t really matter because the treatment was the same. B-12 shots. 6 years later I moved across the country and got a new doctor. Now in my mid 40’s I have only added to my symptoms. I had a gap when I didn’t get shots but had started using a daily sub lingual liquid. I went to my new doctor and told him I was b-12 deficient and would need to get shots again. He asked if I was getting them to boost my energy.I said I had many symptoms and was truly deficient. He seemed skeptical. There were troubles obtaining my old records so months passed. I went in for different symptoms which he ran tests about but of course they were normal. I finally insisted he run and b-12 test. In all these years I have gotten worse and my levels came back at 190. I got the same answer as to wanting to find the reason and go the same response. I was told to come in for shots 1x a month. I am now taking matters into my own hands because I felt that I didn’t just have a little vitamin problem. The research I have done has astounded me! I have many of the symptoms of pernicious anemia. I have began to have stomach issues as well. I asked about the difference between pernicious anemia and b-12 deficiency and he looked at me like I was dumb and said that my blood work did not show I was anemic. I called today to see what labs had been run and found out that the one needed to discover if I have pernicious anemia was never run! I have decided that I am going to see a gastroenterology specialist and insist on the tests to find out if I have pernicious anemia, if it’s not that I will check on something else. I now know I have been very under treated for years! I only hope I can feel better once I get proper treatment and some of my damage are not permanent. I feel so cheated! I have lived in big cities, going to doctors with prestigious educations. This is just not hard stuff. I was tired, my hands and feet tingle, I am short of breath for no good reason, my heart sometimes races, now my bowels clear out for no reason and sometimes feel like they are full of acid and burn me. I had such word retrieval problems I was truly scared and tried to laugh it off and wondered why. Your article is the first time anyone has explained what has been happening to me and why!
    I hope I can find someone who knows what they are doing and I can receive the treatments I need at the right doses. If my numbers improve,what should I even shoot for? Since most doctors think 200 is in the normal range! I just took my vegetarian daughter in because she has been too tired for her age. I insisted they do a D and B-12. Her D is low (23) and they said her b-12 was normal. I asked for the actual numbers. 270. She is 16! They were perfectly fine with that. I am not.Thank you for your help! I really needed it.

    • Greg says

      Hi Aleatha,
      Welcome to the site. If you scroll through it you will find many answers to many questions. One answer you will not find though is why doctors keep failing to recognize, diagnose and treat VB12 deficiency. I think you will find that most people share your frustration. The next thing you will not find is why the doctors keep insisting that you have sufficient VB12 once the path lab says you have. The path labs only report on the standard range that they see from day to day. If you fall within the 95% confidence limit they deem you as “normal”. Literature suggests though that to be clinically normal you should be greater than 400 pg/ml or >300 pmol/L. Even this may be a little low. It is a bit more complicated than this (as you will find as you read more).
      Your daughter vitamin D level is extremely low, doctors here are recommending above 100, also her vitamin B12 level is at best marginal.

      If you want to be armed with literature to push under the nose of your doctor please contact me directly and I can give you a list of references. grj”@”mentorconsulting.net.

      I would strongly urge you to get better treatment. Whilst you have any signs of overt deficiency, remember there are much worse things happening in your brain.

      There is also more info at http://www.vitaminb12deficiency.net.au/Home.htm

      Good luck.

      • Aleatha says

        Thank you for your information and offer for more. I will follow up. I want to have a solid level of knowledge when I go to the doctor. I hope to remain firm in the face of skepticism and ignorance/apathy, I am not sure which. I have been trying to fix a deficit the size of a bathtub a drop at a time and only once a month at that! No more. I have no idea who can help me but there must be someone in the Salt Lake City area. We have a huge medical university (University of Utah) that does a lot of medical research. Perhaps I can start there. Are there any particular posts here that might be more helpful than others for me? There are so many!

        • finndian says

          You have to understand that doctors get about 12 hours of training in nutrition during their entire schooling. Most wouldn’t know a b12 deficiency if it bit them in the ass. California is the first state in US (and still the only) to make courses in nutrition mandatory in medical schools and that was just last year!

          I googled “Salt Lake City Alternative doctors” and the yellow pages show over 150 listings. My alternative doctor is 6th generation Chinese medicine doctor and an MD. He lets me pick a nutritional solution or a prescription for my issues.

  115. tammy lee says

    where can I buy decently priced methlycobalamin injections/vial online? some say to watch where u buy it from? thank you..

  116. Ana says

    This site I hope will help me as far as changing from Cyanaocobalamin to Methylcobalamin. Same story here just more whacky. Diagnosed at 17, now 24, with injections of Cyana at 1 ml every week, sometimes 2 due to menstrual cycle per general practitioner. Have also started noticing decline in effectiveness of weekly injections with more severe symptoms. Also have severe neuro damage. The important thing to absolutely stress is to not settle with a MD that brushes you off. Also, watch out for shortages of B12 at your pharmacies, as that has been a occurrence for me anyway. Currently keeping an eye on positive RA/Lupus factor. Definitely have pernicious anemia, also sjogrens syndrome. Hopefully will see a difference with change of subcute B12, thank you for the information. :)

    • Greg says

      Hi Ana,
      Interesting that you were having so many shots of CN-Cbl and still had symptoms that are getting worse. There was a study showing that 50% or people getting CNCbl shots were unresponsive and I guess that you are now one of these. The high inflammatory response seen with RA/Lupus consumes so much VB12 due to reaction with NO produced in the inflammatory process, plus macrophages, which are highly activated in chronic inflammation consume lots of B12 and folate. This is particularly common in people with RA, of whom over 50% are VB12 deficient.
      As for switching from CN-Cbl this would certainly be a good idea, as you probably are now in the situation where you can’t convert it to methyl and adenosylcobalamin. Your neuronal conditions would certainly suggest that you need at least MethylCbl, but if you need MeCbl you will also need AdoCbl as well.
      Recently it has been shown that 2.4% of all cases of VB12 deficiency are associated with Sjogen,s syndrome, so you effectively have a triple whammy with your RA/Lupus/Sjorgen’s
      You probably already know this, but vitamin D is very important as part of the treatment for RA and Lupus, so if you haven’t already had your levels checked it may be advisable to do so. Doctors are currently recommending that vitamin D levels be above 100 nmol/L (`40ng/ml).

  117. Val says

    Dear All! I had a really low Vit B12 reading (Total Serum – 84) and had all the usual symptoms as described here – numbing, tingling etc. The i have been on shots for few weeks on a weekly basis then was switched to once every 2 weeks and then switched to once a month basis after a blood work revealed my levels were around 1800. My question is this: I feel pretty bad with all the symptoms coming back right around the time when i am due for a shot. Is this normal? I think i am also suffering from Erectile problems? Could this also be B12 related?

    thanks,
    Val

    • Madge says

      Dear Val,
      Yes this is all to be expected. I don’t know why they only give the shots so infrequently. Clearly the shots are not stocking up the levels of vitamin B12 in the liver or more importantly in the brain, as otherwise you would be able to go for a lot longer without shots. For the life of me I can’t understand why doctors and PA patients don’t understand this. If it was restocking, you can exist for years without another injection, as when people turn to veganism with no VB12 in their diet it takes years to become deficient.
      I think that this is one of the huge advantages of the trandermOil approach to vitamin B12 administration, there the material seeps through the skin over time, therefore allowing restocking.
      Yes erectile dysfunction, low sperm counts, low libido, etc are all signs of vitamin B12 deficiency.

        • Madge says

          Hi Val,
          Whilst there is no harm in taking excess VB12 particularly if you tolerate the injections, I personally believe that for people who are deficient the spray and the patch are a waste of money as they deliver so little material.
          Apparently the transdermoil site is down for another month due to issues getting a new web-site up and running.
          If you really want the product you can email greg at grj”at”mentorconsulting.net. Apparently he has stocks at the moment.

  118. Jessie says

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

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

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

  119. says

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

  120. Nicole says

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

    • Greg says

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

  121. Jamie says

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

    • Greg says

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

      • Mary says

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

        • Greg says

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

  122. Colleen says

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

  123. Robert says

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

    • Madge says

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

      • Robert says

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

        • Madge says

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

          • Robert says

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

            • Madge says

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

  124. Hails says

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

    • Tara says

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

      • Madge says

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

  125. Lorraine says

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

    • Madge says

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

  126. Eduardo says

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

  127. patty says

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

    • Madge says

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

  128. Colleen says

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

    • Greg says

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

  129. judi says

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

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

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

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

    Thank you so much!!

  130. Cynthia says

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

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

    Any advice would be appreciated

    • Greg says

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

      • Cynthia says

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

        • Greg says

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

  131. kerry says

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

    • C. Miller says

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

    • Madge says

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

    • Aleatha says

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

  132. C. Miller says

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

  133. drew says

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

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

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

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

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

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

    • C. Miller says

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

    • Greg says

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

  134. C. Miller says

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

  135. C. Miller says

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

    • Greg says

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

  136. GD says

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

    • Greg says

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

      • GD says

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

        worried sick.

        • Greg says

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

  137. C. Miller says

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

    • Greg says

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

  138. Judyj says

    Chris Kresser,

    I was reading a lot of information about the absorption of B12. Eight years ago, I started having numbness and tingling in my feet, feeling tired and having trouble with memory. I saw about 4 neurologists including one at Cleveland clinic. I had a few MRI’s, spinal and numerous blood tests.
    No one could find out what was causing this. They told me to go back to my regular physician.
    Two years later a family member told an internal doctor about me. I went to see him and I had another MRI and blood tests and it was was not MS, which none of the MRI’s showed MS, but he found I had a VERY SEVERE B12 deficiency. My level was an extremely low 41. Of course within these past 2 years before he found it was my B12, my conditions were getting worse. He started me on B12 injections regimin which made my level go up but unfortunately, I had permanent nerve damage.

    My balance is very bad, I have numbness and tingling from the waist down extreme stiffness and spasms in my legs and feet. And in my hand too. I use the Nasal spray now which my level has been in the 700 range which my dr, is satisfied. But now I have to use a cane, or a rollater, and in the house I just hold onto things. I’m on baclofen and valium for stiffness and spasms. I’m unable to work at any job.
    I was evaluated at the Mellon center in Cleveland clinic. I’ve been denied soc. security disability and ssi
    each time I’ve applied. Now since it has been 8 years later, I still haven’t fully accepted being disabled but everyday I try my best to get things accomplished but at a slower pace. I wish somehow or way I could get my message out to people how important B12 is.

    I just wanted to share my story with you.
    If you could email me back to let me know that you received my message.

    Thank you.

    Judy

    • Lynn_M says

      Judy,
      Your story is an indictment of our medical system. If one of those doctors had given you a B12 test earlier on, think of the misery and ill health you might have been spared. And all that expense spared as well.

      It’s probable you’re still not getting optimal treatment. In some people, the serum can show an adequate level of B12, but the CNS can still be grossly deficient in B12. Your symptoms suggest you have subacute combined degeneration (SCD). Nasal sprays are not an adequate treatment for SCD.

      Freddd (see his prior posts) has made a remarkable recovery from his SCD based on a protocol of his own devising. It’s a very long road, but you too might be able to experience some recovery. Greg’s company, Mentor Consulting, makes a transdermal product called Red B12, that I think is a much better treatment for B12 deficiency diseases. He gave his email previously: [email protected]. Some people have had a recovery previously thought impossible via rigorous application of Red B12. It is possible to replete your CNS B12, and sometimes seemingly permanent nerve damage can be reversed.

      • Greg says

        Hi Judyj,
        Thank you for sharing your remarkable story with the group. As Lynn has said it is a remarkable indictment of the general medical system. Every time I read a story like this I am amazed that vitamin B12 deficiency was missed for so long, particularly considering your neuronal symptoms. As Lynn has said it is such an easy thing to at least try early on and the test for deficiency is so cheap and easy. I am sure that you are now well and truly around the literature on VB12 deficiency. I have attempted to add some more information on my web-site http://www.vitaminb12deficiency.net.au . My reading of the literature suggests that it may take months or even years to reverse the neuronal damage, during this time it is essential that you keep your levels up. Once the damage has been done to the neurones, they can recover, but it is very slow. The lipids and myelin basic protein have a very slow turnover time, so these have to be gradually replaced for you to get normal function. In this regard Freddd’s story is relevant as by persisting he gradually got better. Many studies in the literature appear to not take this slow turn over into consideration and finish too early.
        As Lynn has also eluded to it is important to get the levels in the CNS up again and several studies have shown that this does not happen with either high dose oral or with sprays or sublinguals, or if it does it is very, very slow, which may explain why it took Freddd so long. It is for this reason that we designed the transdermal product that Lynn eluded to.
        Apart from the treatment, one of the most important things to also identify is why you became deficient, as this also has a massive implication later on. Evidence suggests that if you are severely vitamin B12 deficient you also have trouble with intestinal absorption of most of your water soluble vitamins, so it would be useful for you to have your levels of these checked.
        So be patient, you are on a long road, but at least you have turned the corner. You will find that this group is very supportive if you have further questions.

        • Judyj says

          Hi Greg,

          I was so happy that I finally got a response from somebody. As there are support groups for MS patients there is nothing for people like me and joining this might help me with my depression sometimes. I will read the link you gave me. I will keep you up to date on things.

          Thanks!

  139. GD says

    For people in general that have B12 less than 100 – what was the prognosis? How are you guys feeling and how long did it take to start feeling better? I feel like crap and my B12 is 84 and i have been on shots for 8 weeks now (once a week) and i still feel all the numbing/tingling and muscle spasms! Its like the stock market – one week i am great, another week i feel terrible. Hope its an improving trend though…

    Please HELP!

    • Greg says

      Boy 84 is REALLY LOW. IT is going to take you some time to get up over 300, so be patient. Do you know what type of VB12 you are being injected with CN-Cbl, OHCbl, AdoCbl or MeCbl. My guess would be CN-Cbl. If you are getting a small boost following injection that is a good sign. Trouble with injections is that they give a huge amount of VB12, but the effect is only transient. Many discussions with this on the site if you require further info, but just ask if you want more information. There are many people on the site who are only too willing to help.

      • GD says

        Greg – thanks much! I feel great a day after the injection…then i started feeling better days on at a time, then a week at a time. Shortly there after, i started working out again and now i feel like crap – almost like back to square one. Did another blood draw to check my new levels. Waiting on results. I dont know if my withdrawal is more than what i am injecting into my system. Do you know if injections once a week is good enough? I am on the cyanocobalamin B12…forget the actual name. I also take the lozenges nightly. Can you OD on the lozenges or B12 in general?

        thanks again to the entire community in general…we shall overcome!

        • Greg says

          Hi GD, So some good news there. At least the VB12 is having some effect as it brings you back “from the grave”. So it now looks like you are in the “overdoing it” category. With your injections, you get a big boost all at once, but it will take you possibly years of injections to get your levels up to say >400 so that they will stay up. Some people with uptake problems need injections for life, so it shows that the injections won’t last and don’t necessarily completely restock the system. So as you try to get your levels up and maintain them you will feel a boost but it will only be transient as your liver stores (and arguably your CNS stores) won’t be “filled up”.
          Don’t think many people on the group like CN-Cbl, it is a provitamin and is not converted to AdoCbl and MeCbl as effectively as either HO-Cbl or giving the mix of Me/AdoCbl.
          As for the lozengers, there is much better technology out there, and many people complain of the effects on eroding your teeth, etc with lozenges.
          Over-dosing, well they have injected 5 gm HOCbl iv for cyanide poisoning, so not very likely with your doses.

            • Lynn_M says

              Madge,
              Greg has shared much with me about the biochemistry of B12 and why using a transdermal application such as Red B12, or subcutaneous injections, provides a sustained release of B12 into the body, and thus is far superior to the peaks and troughs experienced from IM injections of B12. I agree with you that GD would be better off with Red B12, but I think Greg is being careful about not overpromoting Red B12.

              GD,
              I have been using Red B12 from transdermoil.com for around three months, after using sublingual methylB12 for several years. I can tell a noticeable increase in energy and upbeat mood lately. Since I’m taking other supplements as well, it’s hard to attribute that energy strictly to Red B12, but the timing makes me think it’s largely responsible. I am one of those people whose teeth were getting etched from sublingual mB12. With MTHFR, CUBN, and FUT2 mutations, I will be on methyl B12 for life, so I’m grateful that a transdermal application method that gets the B12 into the cellular level is now available.

              If you have MTHFR, FUT2, or CUBN mutations, the cyanoB12 isn’t going to do you much good. You will need either hydroxyB12 or methylB12. There are research articles out there that I’ve read with results that say cyanoB12 doesn’t work as well for anyone, even for people without those mutations. CyanoB12 injections are convenient to obtain and cheaper, but for many people cyanoB12 just don’t do the job. Subcutaneous injections are better than IM for B12, but I think Red B12 is even better. No injection needed.