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. 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

        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.

  2. 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.

    • 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!

  3. 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

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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.

  16. Michael says

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

    Michael

  17. 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.

  18. 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

  19. 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.

  20. 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.

  21. 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.

  22. 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.

  23. 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.

  24. 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.

  25. 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.

  26. 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.

  27. 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!

  28. 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.

  29. 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?

  30. 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.

  31. 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.

  32. 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.

  33. 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.

  34. 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.

  35. 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.

  36. 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.

  37. 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.

  38. 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.

  39. 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.

  40. 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……..

  41. 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

  42. 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.

  43. 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.

  44. 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.

  45. 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.

  46. 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.

  47. 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.

  48. 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?

  49. 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.

  50. Christine says

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

  51. 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.

  52. 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.

  53. 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 .

  54. 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.

  55. 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

  56. 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.

  57. 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.

  58. 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.

  59. 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.

  60. 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.

  61. 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?

  62. 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?

  63. 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.

  64. 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.

  65. 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.

  66. 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.

  67. tammy lee says

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

  68. 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).

  69. 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.

  70. 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!

  71. 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.

  72. 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.

  73. 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.

  74. 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.

    • Greg says

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

  75. 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.

  76. 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.

  77. 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.

  78. 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.

  79. 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.

  80. 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.

  81. 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!!

  82. 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.

  83. 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.

  84. 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?

  85. 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.

  86. 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.

  87. 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.

  88. 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.

  89. 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.

  90. 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: grj@mentorconsulting.com. 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!

  91. 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.

              • Greg says

                I totally agree with Lynn (and no I don’t like to push the product – guess I never was a salesperson).
                GD and Madge, what is also very important (and you can see that from Lynn’s comments) is why GD is deficient.Do you know if it is diet, disease or genetics? It is very important to determine this as it makes a lot of difference down the track. Mind you, if you look at all the possible neuronal problems of being deficient in VB12, I for one would also be taking VB12 for life (and for neurones).

  92. sam says

    I was feeing fluish the past 3 day with low grade fever, ear ache, tiredness, sinus pain, loss of appetite. The last 2 days have had pins and needle feeing in my arms and legs more just in my arms today and just got some red blemishes on my but. I went to the doc yesterday and he said it was just the flu. don’t have flu symptoms as bad today just pins and needles

    I have been on a dairy an gluten free diet off and on since July, trying my best to stay off it but its hard.

    I think my calcium is low ad could my b12 be also. I also have 1 petechial on my elbow and one on my chest.

    scared I have cancer.

    • Greg says

      Hi Eliot,
      Great point about the deficiency in cattle and sheep. This is particularly a problem in areas of low cobalt in the soil, and hence the bacteria in the gut of these animals can’t make sufficient vitamin B12 (as no cobalt), hence the cattle or sheep become deficient. This is also an example of what we can learn from these animals as far as vitamin B12 deficiency and its consequences, which are actually quite similar to the human story. Thus in pregnant animals, the VB12 levels in the foetus are a reflection of the mothers. Thus if the mother is deficient, so too is the foetus and neonate. After birth, the levels of VB12 in both mothers and neonate drop dramatically and then slowly climb back. This also happens in humans. Why on earth mothers are not told this escapes me.
      The next point is that the symptoms of deficieny in the neonatal animals is similar to humans, failure to thrive, developmental delay etc, etc. Following up further in the literature you also find in animals (as in humans) those that are deficient have poor differentiation in the gut, and have compromised immune systems leading to an inability to maintain the barrier function in the intestine with resultant gastro-intestinal tract problems. If you follow the thread of many of the discussions even on this web-site, it is a very common finding in humans who are VB12 deficient. I would urge all of you who are considering to have a diet low in vitamin B12 to supplement, if only for the sake of the unborn and new-born child. They do not deserve to be developmentally delayed, pre-term and/or have microencephaly (small heads).
      In short there is much that we can learn from livestock animals as far as the consequences of cobalt/vitamin B12 deficiency.
      I thank you for making us aware of the area, which I for one had temporarily neglected.

  93. Sarah says

    I am 22 years old, I was diagnosed with serve B12 deficiency this year. My symptoms started when I was in grade 9 however. I was sitting at my desk when my fingers on my right hand started to feel tingly. The feeling began to slowly move up my right arm, as well as my left. The second set of symptoms I had followed a year later. While showering I became VERY disoriented, dizzy, had tunnel vision, and collapsed. My most recent symptoms, I was speaking to a friend of mine when my head started to feel… airey. I became very dizzy, lost my vision, and in my head all could hear was a household fire alarm going off. I then blacked out while standing and my legs gave out. Luckily my boyfriend was there to break my fall. I had neglected to attend my doctor’s office for regular shots.

  94. Leilani says

    Hi,
    Can anyone advise me on this: I have pronounced peripheral neuropathy plus significant weakness down my right side – to the extent of walking with crutches now. No gross neurology on MRI scan, but longstanding M.E. I guessed at B12 deficiency and went for a test. After the test I started just taking the sublingual B12 myself while waiting for the results. This helped a bit -but the test came back very high! Over 2000. This has been consistent over the past year. I just came off supplements for 3 weeks to get retested, and my symptoms have really deteriorated as a result – but the test is still sky-high. I can’t get injections because my level is high, and the GP and neurologist have nothing to offer.
    So, my question – why could my B12 be really high, with deficiency symptoms that improve with B12?? And what do I do now? I asked for an active B12 test but the lab refused it (English National Health System).
    Thanks for any help,
    Leilani

    • Greg says

      Hi Leilani,
      There will be many others who have contributed to this discussion over the years who have had similar, misleadingly high vitamin B12 levels, who might re-affirm this on the forum. By my records, over half the people who have had similar problems have had levels over 1000 and also have had troubles with their doctors prescribing vitamin B12.
      Looking at the literature this paradoxical effect, it is not particularly well dealt with, but it also probably confounds, or affects many studies looking at vitamin B12 deficiency, as if there are people with symptoms such as yours and yet have high vitamin B12 levels, they will say the effect/symptom has nothing to do with vitamin B12 deficiency.
      So what can be going on. My guess (as no-one appears to have done the study) is that either you have a very high circulating level of haptocorin (a vitamin B12 binding protein), which keeps the vitamin B12 in serum, but the B12 is not available to nerves etc, so you look as if you have good vitamin B12, but in fact you don’t (yes your active B12 test would tell you this). Another possibility is that you have a bacterial over-load in your intestine that is making defective B12, which once again shows up as positive on the B12 test (once again the active B12 test may tell you this). There is also an increasing amount of evidence that suggests that in chronic inflammation there is continual synthesis of nitric oxide, which reacts with vitamin B12 making NO-VB12, which also is not active, but would show up as B12 in the serum (once again this would show up in the active B12 test).
      So if the B12 that is being measured is “inactive B12″ you would need to replace it with active B12. This presumably is what was happening when you were supplementing.
      Of the people whose levels that I know were high, most if not all appear to have improved with high dose mixed adenosyl/methyl VB12.

      • Leilani says

        Thanks for this, Gregg,
        It’s great to have some idea of what to look for. I’ll take your comments to my doctor and find a way to get the active b12 test.
        Regards,
        Leilani

    • Catherine says

      St. Thomas’s Hospital in London will do an active B12 but you have to pay for it. I investigated and if your GP writes a letter they will carry one out, but the onus is on you to pay.

    • AnnF says

      I don’t know what my serum level was before I started taking the sublinguals, but it was 800 after. My doctor — who never heard of MMA — advised against taking more B12, which I ignored.

      Three months before (when I hadn’t taken B12 yet), I could barely walk into her office, where I complained about all the symptoms I had. After the B12, I practically ran up the stairs to her floor, and had no more complaints.

      • Kristina says

        Greg, Thank you very much! I’m going to a new Gastro Dr in a couple of weeks and will be sure to discuss the bacterial overgrowth and my B12 levels and anything else the SIBO is interfering with. I’ve had trouble with my vitamin D levels also. If I could only get rid if this SIBO.
        Thanks again,
        Kristi

  95. Cari says

    Have an important question hoping you can answer as trying to figure out treatment for my daughter. What happens when you are allergic to cobalt/b12? I am at this point. do you think that there is a problem elsewhere in the cycle and the cobalt/b12 just builds up? If on skin it burns/scabs skin. tried testing at home with activated form, but test was inconclusive. when activated form given, skin gets worse. but i fear for anemia too and the effects as to not having it. She has had to stay away from anything that contains it-milk, cheese, fortified foods or grains, etc. not many people dr even deal with this in depth. maybe you can help. we do have her genetic profile too and where other mutations are.

    • Madge says

      Hi Cari, Although this is very rare, it does happen. From careful examination of the literature it is still not clear if it is an allergy to vitamin B12 itself or due to some minor contaminant in the preparation that the person is allergic to. As far as I can see, several people who have been allergic became allergic after having injections. Once they found they were allergic to say cyanocobalamin they switched to hydroxocobalamin. I have not found any references to anyone being allergic to adenosylcobalamin. I would definitely try to source a different brand or type of vitamin B12 and see if that helps. You can just do the little skin test with it.

  96. Leticia says

    I have just been seen by an endocrinologist for the first time. He is running a b12 test on me amongst many,many others. I have had so many symptoms of B12 that I believe now that have been “misdiagnosed” all these years when 10 years ago when I was diagnosed with Bi polar and Fibromyalsia because of tingleing pain in my legs and feet that I cringed and procrastinated to put my feet on the floor in the morning. I could barely walk. It wasn’t until I was put on Lyrica that the pain subsided. I take just effexor now and it seems to be controlling the pain. And I was also taking metformin for several years, I have been on and off Iron pills and Vitamin D pills by my primary doctor. I also have all the symptoms of hypoglycimia but blood results of Hypergclycimia. I dont know if that fits in anywhere but I am to the point that I dont care what the news is, I need a definitive answer! Anyone have any ideas? Anyone else have a similar story? HELP!

  97. Mike S. says

    Hi Colleen, You’re better off getting potassium from bananas or other food than from supplements. Potatoes, tomatoes, and many other fruits and vegetables also have lots of potassium. If you take a supplement, potassium gluconate is easier on the stomach than potassium chloride. I use potassium gluconate because I don’t eat many fruits or vegetables.
    Don’t bother with the magnesium test. The usual tests are notoriously unreliable. (I have a reference to a study showing that RBC magnesium can go in the opposite direction of body load.) It’s best to do a trial with a magnesium supplement and see if you feel better. It’s very hard to overdose on magnesium. Some people do OK with the citrate form, but I find it’s an effective laxative. The amino acid chelated forms are probably best. I prefer the glycinate form. Many people like the malate form.

    • colleen says

      Mike the chemist today gave me Magnesium Forte. to take one a day (Magnesium oxide-heavy457mg,Magnesium citrate nonahydrate 870 mg etc)
      Unfortunately i need a script from my Doc to get potassium supplements.As im a vegetarian I do eat alot of fruits & vegetables so will stick to bananas etc for now.

  98. Greg says

    Hi to the group, just thought that I would update you on some information that I found with hypothyroidism and vitamin B12 deficiency. Several studies have now shown that up to 40% of people who have hypothyroidism either have anemia or are vitamin B12 deficient. Now that does not include all the people who are sub-clinically deficient in vitamin B12. So what is the link. Well it is a bit complicated and there is quite a detailed description on the http://www.vitaminb12deficiency.net.au web-site. To the short answer is that thyroxin produced in the thyroid, is involved in the conversion of riboflavin (vitamin B2) to FAD. Now FAD, plus vitamin B3 is a co-enzyme for MTHFR, so if you can’t make FAD, then the MTHFR won’t work. You then can have simlar symptoms and deficiency to those with the mutations in the MTHFR gene. One of the reasons that this is hard to diagnose is that hypothyroidism has some similar symptoms to vitamin B12 deficiency. This also has applicability for those with mutations in the MTHFR gene, who should make sure that they are fully “primed” with B2 and B3.

    • Lynn_M says

      Greg,

      You mention that those with mutations in the MTHFR gene should make sure they are fully “primed” with B2 and B3. Does it make any difference if the B3 is nicotinic acid, niacinamide, or NADH?

      Also, niacin is known to deplete methyl groups. Does this depletion happen only with the nicotinic acid form of B3, or also with niacinamide?

      • Greg says

        Hi Lynn, you definitely need vitamin B3 to make NADH, which is an essential element of the Krebb’s cycle as an electron acceptor and then in the electron transport chain to donate electrons. This is apart from its role in MTHFR. If you are deficient in it, not only will you have problems in making 5MTHF, but your energy systems will definitly “go slow”. No need to go beserk with supplementation though. You can make it from Tryptophan. You can check out the RDA at the Linus Pauling web-site http://lpi.oregonstate.edu/infocenter/vitamins/niacin/ . As for the methyl group depletion, I don’t know if I am a strong advocate of that theory. It is involved in the conversion of methenyl-THF to methylTHF (5MTHF), so technically it is a methyl generator. It has been used at high doses for lipid depletion and atherosclerosis control. Possibly this is due to its role in the CAC. I would, however use nicotinamide, rather than niacin or nicotinic acid, which are supposed to cause flushing.

    • colleen says

      Hi Greg,this just seems to be getting more complicated for me.i had my first lot of B12 injections back in june.my DR gives daily injections i understand other doctors give weekly injections until levels are high enough than 3 monthly for life.i have fely very light headed & extremely tired .im just getting through the days doing the necessary stuff.this is difficult having a 6,8 and 16 year old who are energetiic.ive had tests recently Intrinsic Factor Antibody (negative )Antiparietal Cell Antibody (negative).my serum B12 is 1476 pmol/L.. when i was first tested for B12 my levels were 175 pmol/L .my thyroid meds have been reduced to 100mg a day as i have hypothyroid.now im confused if i had thyroid problems first or B12 deficiency.even though i have been treated for my hypothyroidism for 16 years ,think alot of B12 deficiency symptoms happening back than also.The b12 injections are hydroxocobalamin.i have also purchased the Transdermiol to try when my levels have dropped.think i will get levels tested first & try the oil for abit & get tested again to see results..my Dr doesnt seem to explain alot or want to discuss options ,necessary testing etc.wondering if high levels can make you feel lousy and can it take sometime after treatment to feel normal.just want to work out why im deficient & what tests to have that may help improve things .

      • Mike S. says

        @Colleen – The light-headedness and fatigue can be symptoms of potassium deficiency. You were badly deficient in B12, and that slowed some healing/growth processes in the body. When you replenish your B12 reserve, those processes speed up; which can use up your potassium reserves. Another symptom of potassium deficiency is twitching or cramping muscles. I developed a few facial twitches and leg cramps after I started taking B12. Supplementing potassium and magnesium was very helpful. Potassium and magnesium work together, so it’s a good idea to supplement them together.

      • Greg says

        Hi Colleen,
        The chicken and egg story with thyroid and vitamin B12 deficiency. My reading of the chemistry is that the hypothyroidism can theoretically cause the VB12 deficiency, and many people who have been shown to have hypothyroidism are VB12 deficient, supporting that hypothesis. If you were not tested for your VB12 levels early on you won’t know when you became deficient. As for not getting your energy levels up with hydroxocobalamin, my guess would be that either you are not converting it efficiently to adenosylcobalamin, or you have a deficiency in one or more of the othe B group vitamins involved in the citric acid cycle, such as B1, B2, B3 and B5, or zinc (essential for the electron transport chain, ETC). There are genetic conditions where people cannot make AdoCbl and need to be given it, particularly if they are not getting it in their diet. Normal supplements have CN-Cbl at worst or OHCbl at best, so the best source is the diet (red meat). Another important thing for conversion of OHCbl to AdoCbl is intracellular glutathione (GSH). Evidence suggests that the level of GSH inside cells may be reduced if someone is taking too many anti-oxidants. Also if have low levels of sulfur (methionine or Cys) in your diet you can have troubles make GSH, and troubles making some of the ETC proteins. Wait and see how you go with TransdermOil product, if you still lack energy, then it may be the B group vitamins.

        • colleen says

          Thanks Greg Im getting desperate to find an answer as im struggling to get through the days and its affecting my kids.My husband doesnt complain but its not fair when he comes home on his days off he practically does everything & I keep going back to bed.
          I try to make sense of what im reading but my brain still isnt functioning how it should & its hard to take it all in & understand it.Im wondering if i should start on the oil now or wait til my B12 levels drop abit from 1476pmol/L .im wondering the oil is going to send my levels up extremely high if im using it once a day.

  99. karen says

    I am 41 years old and went to the doctor because my feet and hands were having problems, anyway they diagnois it and said i was b12 low (my test results was 50 and supposed to be in the 300). Anyway they prescribed b12 vitamins one a day.

    Does anyone else feel very warm and sometimes hot from taking the b12 vitamins? I am alway warm, when i sleep i am sweating that much that the blankets are damp?

    • Greg says

      Hi Karen,
      Probably not all that surprising. If your levels of vitamin B12 were so low, your metabolic rate (which is the rate that you burn energy) was probably very low, and so you were not generating a lot of heat yourself. Now you are having vitamin B12, your mitochondria (the little power-houses in the cell) are able to function faster and they generate the heat. You have probably got used to being colder and so now you feel hotter as your metabolic rate is higher. It is a good sign, it means that the VB12 is working.

    • GD says

      Karen – my levels are awfully low, much like yours – was wondering how you are feeling now and have you had a follow up check on your B12 levels? If you could let me know on how you brought your levels up that would be great. Hope you get to feeling better!

  100. mandie says

    hiya, ive been told today that my b12 test has came back low at 168. ive goto have 6 injections in two weeks and one every three months after that. ive got a lot of neurological problems and have recently been put on 150 mg of b2 for glutaric aciduria type 2. ive also been on 5mg of b9 for past 5 or so years. is it just a coincidence that im on 3 different b vitamins or is it all related. i havent got a clue. thanks

    • Madge says

      Oh, that sounds bad, you must be worried. You may have to educate your doctor a bit. All of us have had to do it. Try to find out what type of vitamin B12 he/she is going to inject. If you can get hydroxocobalamin good, but cyanocobalamin is not what you want. Do you know why you are deficient. Is it whatyou eat,or is it some of the genetic problems that so many people on the site have?
      You will work out that you need to know. Do you know if you are deficient in anything else?

  101. Rachel says

    Recently a doctor I have been seeing has recommended I supplement with B12, I am sure based on an elevated MCV of 101. I have been taking a supplement (2 per day) for at least 18-24 months that includes 50mg B6, 5mg Folic Acid, 1000mcg B12 (methylcobalamine) and Betaine HCL 500mg. I have also exhibited B12 deficiency symptoms, ie. fatigue, memory issues, lack of motivation, numb fingers (recently). The doctor making this recommendation is addressing hormonal issues of note, as I am hypothyroid and my hormones are out of balance so I am taking bioidentical progesterone, estrogen, cortisol and thyroid to address these issues. I am not close to the optimal dose for my thyroid yet which I thought was the main issue causing fatigue. Anyway, I am wondering if I am not absorbing the B12 that i have taken for the past year and a half. I recently started taking a sublingual B12 supplement that is cyanocobalamin to see if I have positive results. Otherwise, I would like to try the methylcobalamine, (have found Jarrow 5mg) but after reading this blog, I am concerned about supplements that should be taken with this form of B12. Are Folic Acid and B6 the supplements that I should take along with this form of B12? If I take the methylcobalamine sublingual, would it be sufficient to take the Folic Acid and B6 orally as long as I take them concurrently? I would appreciate your comment on this.

    I love your website! It is refreshing to find medical information that makes sense. I feel affirmed in my own conclusions after looking at the evidence of my own issues. Keep up the good work!

    • Greg says

      Hi Rachel,
      Welcome to the group. Interesting problem you have with the hypothyroidism. Looking into the biochemistry thyroxin (made in the thyroid) actually has an effect on conversion of riboflavin (B2) to FAD. When you are low in thyroxin you can’t properly process B2 to make FAD. Now FAD is an essential co-factor in the MTHFR enzyme, which you will read much of on this site. This then means that you can’t properly process 5;10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This in turn means that you have problems processing methylcobalamin (MeCbl) and so it goes on. If you cruise around on http://www.vitaminb12deficiency.net.au and look for the section of MTHFR mutations you will get to the page on the chemistry of it. Sort of helps you to undestand the problem, although not sure if it useful if you don’t have a chemical bent. Oral high dose methylCbl supplements are not great and you will see some discussion on the web-site. Also from the discussions you may see that it looks like you may have to supplement with adenosylCbl as well (it is involved in energy production in the mitochondria).
      CN-Cbl definitely is not the best form to take, it is a provitamin and if you smoke or live in a very polluted city it is even worse. Minimun would be OHCbl, with best the mix of Ado and MeCbl.
      As for the supplements, it is likely that once you are deficient it has a very negative effect on cell division and maturation, and those who are deficient also have trouble with absorption of the other water soluble vitamins. You definitely need the lot though B1, B2, B3, B5, B6 and B12 (Ado and MeCbl).

    • heidi says

      Hi Rachael

      I also have hypothyroidism and have been B12 deficiency. I have found great success using Freddd’s Active B12 protocol for about 15 months. After 6 months I found I could convert T4 to T3 and handle an adequate amount of natural dessicated thyroid hormone to relieve my hypo symptoms. Being hypo and B12 deficient was a real drain on my adrenals! In my opinion, you need to address both the inadequate thyroid hormone and inadequate B12/folate before you will feel well.

      I use sublingual methylcobalamin (I like Enzymatic Therapy b12 infusion) and adenosycobalamin (marketed as dibencozide). I keep the B12 in my mouth for 1-2 hours and that way it absorbs well. I also take folate in the form of methylfolate. All of these are available online without a prescription. I avoid folic acid which is not well converted or absorbed, and may block real folate from reaching the cells. I also take a vitamin B combo that contains no folic acid. Pure Encapsulations makes a B combo with extra B6, and no folic acid.

  102. Kaytee says

    Hi Greg,

    Hcy and MMA all return to normal after treatment commences and usually within 10 days. ‘Treatment’ can be as little as 3mcg. I’ve got a study somewhere. Murphy and Minot also reported that all haematological symptoms return to normal after 10 days. A US study also reports that ‘once treatment commences all haematological indicators return to normal.’

    What we’ve got to remember here are that haematological indicators are symptoms indicating a deficiency – that are not a diagnosis. The same goes for the haematological indicators in M&Ms day – except then they were looking at RBCs and reticulocytes.

    All it means is that once treatment commences ALL blood tests should revert to normal because those particular symptoms have been remedied. Then you’re just left with the rest.

    I don’t know who ‘We’ are. But I think if you are doing any form of research, with a condition is potentially lethal, then you should at least realise the significance of blood test results being resolved very, very, easily.

    The people who are reading this page, for the most part, may not realise it but they are very, very, lucky, because they are the ones that have at least had the deficiency identified before they got to the stage that they couldn’t resource information for themselves. But, if they don’t do it right, it can all go wrong very, very quickly.

    What I think should be remembered by all is that there is no standard treatment. Murphy and Minot got it right: “Maintenance dosage varies with the needs of each patient.”
    Until we know more, then that’s what we all have to do.

    • Kaytee says

      I have no idea what improvements you are seeing with topical applications and how these are measured and against what control groups – I’ve never heard of any scientific studies being carried out, I’ve never heard it suggested. If there is a product however, I’m sure it must be licensed in some way, shape or form.
      But if you consider that most treatments for b12, if they are given correctly, produce some form of improvement we have to draw the conclusion that b12 deficient patients improve if given the correct treatment. No surprise there then. M&M proved that in the 1920s.We’ve not come very far, have we?
      And you should never use the word ‘cured’ you can only get improvements with on-going treatment. We are, at this stage in history, not able to be cured. In the same way you cannot ‘cure’ a diabetic.

      • Kaytee says

        I also don’t know if you are aware that there is a product, with the initial V (and it’s not Vichy) that have been making a b12 creme for both face and body for several years now. Small amounts of cyanocobalamin admittedly, but this is supposed to stop wrinkles – again no official research.With the amount of stuff I’ve smeared on me in the last 3 years, according to your logic, I should be absolutely fine with no further supplementation. I don’t think so.

        • Greg says

          Hi Kaytee, there is a very famous quote in the formulation world. “Oils aint oils”. Oils are also not creams.
          If you know about formulation a cream is a cream, it is not an oil. They have very different properties as far as what the bulk phase is, the percentage of water, surfactants, waxes, oils, etc.
          They also have massively different properties as far as skin penetration goes. So I am totally not surprised that your water-based, non-transparent, wax formulation (cream) does not penetrate the skin. This it a totally different formulation to an oil based completely transparent formulation that is the basis of the transdermoil formulation.
          So according to my logic, your Stuff that you have smeared on you for 3 years, absolutely wouldn’t work. However, that is probably not what all the manufacturers of skin moisturizers, skin rejuvenators, and those that now promise DNA repair to the skin would say. On the other hand we have much data that says that the transdermoil formulation does work.

  103. Kaytee says

    I think whatever studies we are referencing then we are in agreement that more, in this case, may not be better. There are several referenced studies relating to smaller more oft dosages being more effective than the larger, less frequent amounts. This would be confirm by the scientific basis of how b12 is loaded, and it would also be confirmed by the revered pioneers of the treatment for this illness who recommended that patients were dosed, on average, every two weeks, and also that needs varied with each patient. I am, of course, talking about Murphy and Minot.

    However, none of the studies prove how effective the treatments are at cellular level. Not that I’ve found anyway. And, we are back to the same old, same old, that such indicators are not available to us and therefore we must treat according to how symptoms are relieved.

    When it comes to topical applications. Nice thought. Very simple. But I still can’t see how this would work effectively, as the product currently stands, via this methodology. A patch is different, it is on most of the time, testosterone is different. There are approximately 14 different proteins involved in transporting b12 – it is one of the most complex substances the body utilizes. Has the question been asked if the stores in the liver are analogues – if they haven’t had the correct transportation procedure are they just being stored and not available for utilization? We know that b12 deficient patients carry a lot of b12 in the bowel after it has been through the system but we also know it cannot have been utilized.

    Like I said, there are many people out there whose lives depend on b12 – and I might add, most of them have never been recognised as being b12 deficient. They die of unknown causes. Would we really think a topical application would be sufficient to save their lives without being absolutely certain of how this worked and if it worked effectively at cellular level?

    After being involved with this subject for several years now and sitting looking at thigh muscles that don’t bother flexing anymore, I am very aware at how this condition can be trivialised by all concerned. I’m including scientists in this because they have never really seen the end results. They really don’t know what happens to people when you take them to the wire. Because most people die of a heart attack, a stroke, cancer or dementia before their bodies deteriorate to the point of extreme emaciation and death.

    Personally I wouldn’t be promoting any product until you were absolutely 100% sure of if it worked and how it worked.

    This is very very serious stuff.

    • Kaytee says

      I think I should also mention, that no matter what the stores in the liver, it is indicated in malabsorption patients that the enterohepatic system does not function correctly, therefore these stores are not being taken up and recycled properly. Again, another problem which points to us needing a test that effectively establishes whether the b12 is restoring/regenerating/repairing tissues.

    • Greg says

      Hi Kaytee,
      I agree with many of your points.
      There are however studies showing that at least in some studies you do get material to the cells and alter the metabolism. These studies have looked at changes in MMA and Hcy, and have shown an effect.
      We are currently in the final stages of comparing all the types of supplements in those that are deficient. It is taking a long time to organize as one would expect.
      As for knowing whether the topical material works before the study, I would say this. We have patients who have had the typical VB12 deficiency muscle tremors that we have managed to “cure”. We have patients with FSHD who have managed to get improvement in muscle strength. We have also caused weight loss in patients, presumably by increasing mitochondrial output. We also have had several people reporting increased energy levels. We are pretty convinced that it works.
      I agree about all the problems with the non-diagnosis and even non-treatment of those who are deficient. I personally am appalled at this, having my mother, who was highly intelligent reduced to almost incoherency through the use of metformin and the lack of knowledge of subsequent VB12 deficiency.
      There is much to be done in the area, but you have to start somewhere.

    • Greg says

      Hi Kaytee,
      I agree with many of your points, particularly about people not being diagnosed with deficiency and dying without ever being tested.
      I also think that any replenishment of the system and repair of damage caused by deficiency is going to take a long time, particularly if it involves remodelling of myelin, replacement of MBP, etc. I don’t think that most people realize this, they seem to think that if you get serum levels of VB12 (of unknown type) that that is sufficient. You just have to look at the approach to VB12 injections, where they basically wait until the patient is deficient again before they re-inject. In the meantime the patient has been in partial insufficiency for most of the time. Our calculations suggest that upwards of 20% of the population in the US and Australia is deficient and possibly has signs of sub-clinical deficiency. This is without throwing in the calculation for the 16% or so who are homozygous for MTHFR mutations.
      It is for this reason that the transdermal application has so much promise. It slowly releases saturating amounts of VB12 over hours and hours, thereby hopefully allowing for full saturation of TCII and uptake into the cells and transport into the CSF. It is also the reason for including both Ado and MeCbl in the formulation so that you give the cells every chance to operate properly.
      Yes it is very serious stuff and much more so than the majority of the medical profession will give credit. You just have to go to the majority of the relevant web-sites that totally avoid the problem or suggesting the solution.

      • Kaytee says

        I think you will find that on the rare occasions MMA levels are tested prior to treatment (in any form) the figures suggest that in certain demographics the percentage is a possible 44% of people suffering from sub-optimal b12.
        My concern here is that there is no evidence that topical applications work at all and the ‘science’ behind it is flimsy at best and should not be recommended to patients with a potentially lethal illness. In fact, this is an illness that has always, prior to treatments being available, as a ‘distinct morbid entity.’ You will die if you don’t get the correct treatment.
        And the problem has always been that – patients struggling to get the ‘correct’ treatment. And most patients struggle to get the correct treatment and therefore will try anything.
        But ‘anything’ doesn’t work either – it still has to be proven – because the risk to the patient is permanent physical injury or possibly death.
        That’s why I say, you have to be 100% certain of what you are claiming, because lives depend on it.

        • Greg says

          If I was deficient, this is what I would take, there is nothing that I have seen that would be better.
          Why not try it before you defy it?

        • Allie says

          I do not believe there is a 100% remedy for this, what works for some may not for others. Fact of life.
          Definitely worth trying.

          • Madge says

            I agree, although I have tried the product that I believe Greg is talking about and it seems to work for me. I have had PA for over 20 years, and have been thoroughly fed up with injections, so it was really nice to try something different and find it works.

  104. Kaytee says

    I know that there were studies done on passive diffusion reporting the 1% uptake but have never seen them although the figure is well reported.
    The injectible absorption rate studies which I’ve seen, ‘roughly’ because I’m not looking at them, said 100% at 3mcg and 15% at 1,000mcg. I still don’t know just how they established this though.
    With the oil I’m certainly confused at how it would be picking up the transport protein in the digestive tract. Using the logic the sales people seem to be using simply means that we could all put some b12 in a carrier oil and rub it on.
    Since, like many others, my life depends on getting enough b12, I wouldn’t like to chance that this does pick up protein carriers in some way without substantial evidence.

    • Greg says

      Hi Kaytee,
      The 1% is an upper limit on uptake, with particulates it is more like 0.1%. If you use mucoadhesives, thre are some reports of 1%. Bit of a pharmaceutical science question though. I have never seen 15% at 1000 ug, data I have seen is 90% of 1 ug dose, 45% of 5 ug dose, and <10% of 100 ug dose. You can repeat dosing very hour or so, but you need to restimulate the parietal cells to secrete HCl and stored IF. People on antacids absorb much, much less due to inhibition of HCl and IF secretion.
      If you look at oral biodistribution studies, you only measture 5% of the absorbed dose go to the liver, the rest is pretty much the same % per gram. Normally with VB12 you have to decide whether to include the material that is in the gut (small intestine, stomach LI) as having been transported, in the process of transport, or travelled back to the intestine, so it is confusing.
      With injectable dosing, you get a very similar biodistribution, with around 5% of the retained dose going to the liver. As soon as you over-dose all the "over-dose" goes into the urine.This is also what people report who have hydroxocobalamin who complain that they get purple urine (OHCbl is a purple/red colour, not red or pink). This is the reason why injectable doses don't really load up the liver. If you assume that you actually "loose" 5 ug/day of VB12, and injectable doses last 28 days, you can work out that for an injectable dose of 1 mg dose you only retain around 14%, so the rest is lost. Studies in most animals are very similar, the main difference is the absolute amount that is taken up by the IF-mediated uptake system. From memory some of the studies are reported in the book "Comprehensive B12" by Scneider and Stroinsky. Don't currently have the book though.
      As for the "oil" it is not taken orally, it is specially formulated in quite a unique formulation (no not just any oil – I've tried), which is applied topically, and then goes into the skin transdermally. It then persists for hours in the skin, slowly diffusing out and becoming available. It has the advantage in that it can slowly load up the TCII carrier system. I don't know if you are in the area, but if you know the pharmacokinetics, it is similar to testosterone in patches or in topical oils.
      My apologies to those who don't like the technical questions, but in this instance perhaps you will be patient with us.

  105. Kaytee says

    Hi,
    Gregg – Can I ask for links to the studies that show the uptake of b12 via injection/oral/oil treatments, please?
    Also can I ask just how the uptake percentages were measured ie though tissue sampling etc?
    Thanks.

    • Greg says

      Hi Kaytee, the studies that I refer to have been studies using 57CoVB12, which used to be readily available. They were dosing studies done in mice where all tissue samples were measured. Tissues are dissected out and put in a gamma counter that measures the 57CoVB12. That way you can accurately assess exactly how much gets in. You can also see what happens to it over time.
      Unfortunately the studies weren’t published as we didn’t think that is was that important at the time.
      The comments on the doses available orally in humans are well known, but you will have to go back many years to find them. 57CoVB12 is not used now.
      Studies on transdermal deliver have been done with quite a few molecules, but as yet unpublished. They have shown good uptake through the skin with water soluble molecules, even, proteins as big as 150,000 MW.
      If you are interested I can send you pre-print material, but as it isn’t published as yet I can’t put it on line.
      The important thing in all of this is that one must understand that just as there is a transporter (intrinsic factor) to get VB12 into the body orally, there is also one (transcoblamin II) to get VB12 into all tissues. If the VB12 is not on the transporter it doesn’t get into the cells where you need it.
      Limited uptake of vitamin B12 orally is very well known, however, there seems to be comments suggesting that it magically gets across the intact cell membrane if you throw high enough doses at it. One way of thinking about it is by thinking of cars and a ferry. The ferry will only take so many cars across the water at a time. It doesn’t matter if you have 2 or 1 million cars waiting, it only takes the same number across. High dose oral is a very similar situation. Lots of VB12 but only a limited number of ferries. If you want to test it yourself, take some of the high dose VB12 (methyl or adenosyl or CN, or OHCbl. Dissolve it in water and then see if you can get it into vegetable oil. IT WON’T go in. The cell membrane in the gut that you are trying to get across is like the oil. Even water itself won’t penetrate the cell memebrane unless there is a pore – look up aquaporins if you are interested..

  106. patricia says

    Hello Chris, I follow a FODMAPS diet and see that b12 sublinguals always have some kind of sugar alcohol (e.g. sorbitol) that really aggravate my gut.

    Any suggestion on how to supplement with b12 for those of us who have gut issues (which, not coincidentally, are why I need b12 in the first place)? Should I open my methylcobalamin capsule and try to let the powder dissolve under my tongue?

    • Greg says

      Hi Patricia,
      We appreciate this problem. There are two issues here, firstly the mode of delivery and secondly the problem with your gut issues.
      The amount of material actually absorbed from sub-linguals and high dose oral is at maximum 1%, even in an intact gut. Given that you have intestinal issues it will be less.
      There is a transdermal delivery system that has recently been developed with a product that delivers both Adenosyl and methylcobalamin. Data suggests that AdoCbl is subverted to trying to make MeCbl, so you become deficient in both, hence the dual delivery.
      The product is available from http://transdermoil.com/products/transdermoil-b12

      • Julee Ellison says

        Greg, are you saying that the B12 Infusion (methyl cobalamin) a lot of us have been taking is not really any good? I am curious about the product you posted, and how it is more absorbable by the body. Thank you.

        • Greg says

          Hi Julee,
          You raise some interesting points that I will try to address.
          Firstly the high dose oral/sublinqual tablets, gels, lozenges and sprays. All of these work on a similar type of principle, and that is that if you take enough material you will get a little bit of the material in. The “little” bit is pretty much proportional to the amount that you deliver and is about 1% of the dose. So for a 1 mg dose you get around 10 ug across the gut wall. Now this is marginally better than the normal intrnsic factor-mediated (IF) uptake, which is studies in humans have show can be up to 90% of 1 ug dose, and 45% of 5-10 ug dose. Dosing studies have shown that basically this is the amount that you can get in via the specific uptake mechanism. In order to increase the amount you have to greatly increase the dose administered, hence the high dose formulations.
          The second question is the type of VB12 delivered. In the body you use methylcobalamin as part of the methylation cycle, which can be “upset” or perturbed in those with the MTHFR mutations (a topic also discussed on this forum). This is a hugely important cycle and data now suggests that if you don’t methylate properly you can get increased incidence of MS, RA, dementia, etc.
          The other form of VB12 you use in the body is adenosylcobalamin (co-enzyme B12). This is used in the mitochondria for energy production. If you take high dose methylCbl, and you don’t take adenosylcobalamin, you can still feel like you lack in energy. So really you need both.
          Now getting onto the transdermal oil. This contains both forms, methyl and adenolsylcobalamin. Uptake through the skin in similar to how a “vanishing cream” vanishes. Little tiny drops of water contain the adenosyl and methylcobalamin within a special oil that you rub into the skin. If you enquire of the company they can arrange for you to have either separately or together. I am happy to talk about this “off-line” if you want. I also have further information on the web-site http://www.vitaminb12deficiency.net.au , which I update as I get further information.
          Oh the other thing is, once you are deficient enough to notice, you probably have lost 3-4 mg of stores of VB12. If you only replace this at 5-10 ug /day you can see that it will take a long, long time to get your levels normal.

          • Julee says

            First, thank you so much for replying! I have asked several questions on here before, and have only ever gotten one response. I asked about the product you mention because after taking the B12 I mentioned for over a year, I had company this last week and because of a crazy schedule, I have not taken it this past week … And I feel better, more energized. I just wonder if it is doing anything for me. I am due to go to the doctor and get all of my blood work done, so we shall see if my numbers are any different.

            • Greg says

              hi Julee,
              Thanks for the thanks, a pleasure.
              I don’t know your whole history so it is hard for me to judge from here.
              What I can tell you is that the long term consequences for VB12 deficiency below 300 pmol/L are not good, and include nearly all the symptoms that you read about on this site. Other conditions such as eyesight, hearing, incontinence, RA, MS, dementia and Alzheimer’s are even more worrying. Whilst I don’t have any of these problems, I still take the topical B12, on a just in case basis. I can tell you though that I believe that my memory is improving, and that my hearing seems to be more accute.
              So, if you can find a source of VB12 that doesn’t give you the side effects of your product then I for one would be on it.

  107. Jessie says

    I’m a 19 year old girl, and I was diagnosed with B12 deficiency about a month ago. I have since recently started B12 injections and a strong dose of folic acid. I was constantly tired and I had these sort of niggly pains in my feet and hands. I’d also get like shocks or zaps randomly in parts of my body. It’s still happening quite a bit, but I’ve only had 2 injections so far. I’m getting my next one this week. I’m just wondering does anyone else suffer with these symptoms?

    It’s very annoying and often keeps me awake. I find myself very twitchy and irritable also. Like if someone touches off me I’ll jump. I’m quite cranky and hard to be around. The smallest things will set me off. It’s affecting my relationship with my boyfriend also. He’s very patient and understanding, but often I find I take my frustration out on him, which isn’t fair I know, and then I feel horrible afterwards. I’ll get very teary too.

    Has anyone had any similar experiences? Does it get better? I’m hoping the more injections I get the more I’ll feel like my old self, because I’m quite down at the moment. I feel like I’m angry all the time!

    • Mike S. says

      @Jessie – Those are all symptoms of B12 deficiency, and they should improve with supplementation. Google for “peripheral neuropathy B12″. If you can find the book “Could it Be B12?” (second edition) at a library or bookstore, read chapters 3 and 4 to better understand what’s happening to you.

      If the shots don’t provide improvement*, try sub-lingual B12 tablets. I take Enzymatic Therapy B12 Infusion, Country Life Dibencozide (another form of B12), and Solgar Metafolin daily (folate is essential for the use of B12). The B12 and Dibencozide tablets should be held under the tongue or between lip and gum for at least 30 minutes, or an hour if you can manage it. I usually feel a bit spacey for an hour after taking them, so I take them when I’m not doing anything challenging.

      *One reason the shots may not help is that they often include inactive forms of B12 – cyanocobalamin or hydroxocobalamin. Some people have trouble converting them to active forms. It’s better to get the active forms – methylcobalamin and/or adenosylcobalamin/dibencozide. Try to talk your doctor into prescribing methylcobalamin shots if you’re getting something else. The book “Could it Be B12?” has good info to help convince your doctor to make the change.

      • Greg says

        Hi Jessie, Mike is right about the symptoms.
        What your doctor may not have told you is that once you have peripheral neuropathy or other nerve damage it may take quite a while before the symptoms go away. If you have been sub-clinically deficient for long enough you actually start making faulty myelin and faulty myelin basic protein. Now the body only turns these over very slowly, so you have to wait until the faulty material is replaced before all of your symptoms disappear.
        Also you need to check what shots you are getting. Cyanocobalamin is the worst, followed by hydroxycobalamin. The best thing would be the mixed methyl and adenosylcobalamin. You can get the mix from http://transdermoil.com.
        If you are really deficient you need much more than you can obtain from sub-linquals or high dose oral tablets.
        One thing that is not discussed in the forum is that you actually need to get your VB12 onto the specific transporter for vitamin B12, transcobalamin II. If it is not on this transporter the vitamin B12 will not get into the cells or the brain, but it will be wasted. So it may look like your serum levels of vitamin B12 have improved but if it is not on transcobalamin II you might as well not have it. Sub-linguals and high dose oral does not effectively load up the transporter, although is does give a temporary boost in serum VB12 levels. This is born out by several comparative studies on efficacy.

      • Jessie says

        @Mike S. @Greg Thank you both for your informative advice. I’m getting my next injection tomorrow, So I will speak to my doctor about all of what you mentioned then.

        I also have another inquiry. Initially when my symptoms began, I was away at university so I visited the doctor down there. She did sensory tests etc, and ordered blood tests as she suspected it could be an issue with B12. I was told to make an appointment in a week to check back for results. Long story short I never got the results. I had horrible trouble getting them back due to an incompetent receptionist. She kept telling me she would get someone to call me with results, which never happened, she also told me they couldn’t give the results to my own GP back home, unless he requested for them in writing.

        Anyway after that I went away for a month at the start of the summer and symptoms persisted. When I returned I went straight to my GP at home, explained the previous situation and asked for more blood tests and a B12 check. Low and behold I was badly deficient. Now, what I’m wondering is had I left it longer, lets say I didn’t bother getting more bloods done after not getting the first set back, would everything have gotten worse? I’m just really angry at my University’s health center and the treatment I received.

        Is it serious enough to actually pursue action over? Just looking for opinions. Thank you again. Everyone here is so helpful.

        • Greg says

          Hi Jessie, we do helpful, but probably not legal.
          The main thing it that you now know that you are VB12 deficient, presumably through your diet.
          The most important thing is to get your levels up and get them to stay up. You would almost certainly have got worse. So now you should aim to get way above 300 pmol/L and keep it up. Being low you will probably have done considerable sub-clinical damage to your nerves (particularly in the brain) and you have to get your levels up to repair this damage. Next thing is to spread the word and help educate those around you. Hopefully then the medical profession will listen. Our calculation suggests that up to 20% of the population is sub-clinically deficient. That is without the contribution of the MTHFR population. Despite this people are still taking ant-acids, products for GORD, metformin and similar drugs. B12 levels are not routinely checke in women before, during and after pregnancy, despite the evidence that VB12 deficiency is as bad for the fetus as folate deficiency.

  108. Trace V says

    it has been very informative reading all these comments.. i would like to know if anyone can suggest something to do if the b12 level is low 79 and there is an allergy to b12 (cobolt)… i once had a b12 shot and had such a bad allergic reaction. i knew i was allergic but needed some relief from the symptoms. thanks.

  109. Greg says

    Hi to all, I don’t know if you know anyone with dementia or Alzheimer’s disease, but you probably know of the association between low VB12 levels and dementia and AD. I thought that you might be interested in this study:
    Ikeda T,Yamamoto K,Takahashi K,Kaku Y,Uchiyama M,Sugiyama K,Yamada M. Treatment of Alzheimer-type dementia with intravenous mecobalamin. Clin Ther. 1992 May-Jun;14(3):426-37.

    The efficacy of intravenous mecobalamin in the treatment of Alzheimer-type dementia was evaluated in ten patients using several rating scales. Vitamin B12 levels and unsaturated binding capacities were also measured and compared to the evaluated intellectual function scores. Mecobalamin was shown to improve intellectual functions, such as memory, emotional functions, and communication with other people. Improvements in cognitive functions were relatively constant when the vitamin B12 levels in the cerebrospinal fluid were high. Improvements in communication functions were seen when a certain level of vitamin B12 was maintained for a longer period. There were no side effects attributable to mecobalamin. We conclude that mecobalamin is a safe and effective treatment for psychiatric disorders in patients with Alzheimer-type dementia

    You must note that they needed to give high doses repeatedly over time, so you would need either injections or the topical material

    • ApotheCarey says

      This study is quite old: Has there been follow up? I have been thinking my mother, age 90, who gets B12 shots once a month, should have them more often. If I were armed with more recent studies, I could present them to her doc. She is just getting some dementia. My mother in law has advanced alzheimer’s and is in a memory care unit, and I’d love to present her doctor with some studies also, if they confirm the results of this one from 22 years ago. Thank you!

  110. Greg says

    Hi to all,
    Just thought you might be interested in a new study on vitamin B12 levels in mothers and babies following the birth of the new-born. Cobalamin and haptocorrin in human milk and cobalamin-related
    variables in mother and child: a 9-mo longitudinal study1–3
    Eva Greibe, Dorte L Lildballe, Su´sanna Streym, Peter Vestergaard, Lars Rejnmark, Leif Mosekilde, and Ebba Nexo.
    Basically it shows that during the breast feeding period both the mother and babies Cbl levels drop quite dramatically. This follows another study by the same group, in which they showed a big drop in Cbl levels in the mother during pregnancy. Now somehow Eva Greibe’s group of mothers were all what I would call sufficient in Cbl. The situation is much worse in those that have sub-clinical deficiency. Whilst the study is yet to be done, it is quite possible that post-natal depression can be due to this big drop in Cbl levels in the mums. For some reason that escapes me, generally post-natally depressed mums are not tested. Just thought the group would be interested.

  111. Amy says

    What I have not seen mentioned is the condition of MTHFR acronym for methylenetetrahydrofolate reductase , which may be the actual root cause for the B12 deficiencies. This is a genetic condition that is rather common (some stats show upwards of 30% of the population), which causes breakdowns in the pathways that allow for adequate absorption of many of the B vitamins.. mainly folic acid and B12. B6 is also affected. There is a saying that MTHFR is not a problem until it is a big problem and many people and doctors have never heard of it. The Big problems usually represent via blood clots, fetal death and thrombosis. It is very important that people with MTHFR take the active form of vitamins including methyll forms of folic acid and B12. It is important to know the root cause as this is a genetic condition that can have life altering problems with a very easy fix (i.e. regulating folic intake and B12 intake.) Women, this is very important if you are of child bearing age and are thinking about getting pregnant. You must be on a methylfolate for more than 3 months at very high does (usually given via a prescription). I found out the hard way loosing two children that I have this condition, which is heartbreaking but a gift to the rest of my family who all have been tested. Such an easy fix and so tragic that it is on so few doctor’s radar screens. People suffering from anxiety, depression, joint and nerve pain and a multitude of other issues could in fact have MTHFR as a root cause.

    • Finndian says

      Its been mentioned several times here however another time for the new readers never hurts. My big sign of low B12 is hoarse sounding voice and CANKER SORES. Several studies show that B12 helps clear up recurrent canker sores.

      I suffered all my life with horrible cankers… found I had the MTHFR polymorphism, cured the deficiency with the methyl forms of both B12 and folate and POOF… gone. Haven’t had one canker sore in 8 years.

  112. Eve says

    Do you know where I can find hydroxycobalamin B12? I cannot tolerate methylB12, am on GAPS and now expecting – so I don’t want a huge dose either. Any ideas? Thanks!

  113. Lynn_M says

    Rose,

    Greg’s company is in Australia, so shipping from there should be feasible for you. Just waiting for the announcement of his website.

      • Greg says

        Hi to all,
        Just to let you know that the mixed Ado/MeCb topical oil product is now being sold by TransdermOil.
        Link is http://www.transdermoil.com The product is in a light protected pump bottle and delivers ~2.5 mg/dose. It must be rubbed in well into warm dry skin to work and if done so properly should “vanish” into the skin. BE aware, the product is VERY RED. Ratio of Ado:MeCbl is 3:1, which is roughly the ratio in the body.

  114. Lynn_M says

    Rose,
    I too have a problem with sublingual mB12. The sublinguals use citric acid because acid is needed for absorption of the B12. I have thin enamel and find that the citric acid is etching my teeth.

    I don’t know how effective the patches are. However, as Greg mentioned, there soon will be another application choice for getting methylcobalamin. It is the topical oil his company has developed and that will be on the market very soon. I have been using his adenosylcobalamin topical oil for the last couple months, and they now have a methylcobalamin/adenosylcobalamin product as well. I think now they’re just waiting to get the website up and marketing details finalized before the products are available to the public. The topical oil comes in a spray bottle that keeps it well protected from light and makes it easy to apply.

    I am eagerly awaiting for that product to become available so I can give my teeth a break.

    • Rose says

      Amber….Thanks for the info. I’ll look on iHerb.

      Lynn_M….The oil sounds like a good way of getting B12 but I live in NZ so don’t know if it will be available here or shipped this far. Will just have to wait and see.

      Thanks for the info, both of you!

      :)

  115. Rose says

    Can anybody tell me if the B12 patch is as effective as sublingual methylcobalamin. I am in a difficult situation as the formula of the sublingual B12 drops I have been taking has been changed and now contains citric acid as a preservative. I realize that not much of this gets into the system, but enough to irritate the living daylights out of my pancreas. The B12 box of patches available has only 8 patches which says it’s a 1 to 2 months supply of methylcobalamin. Would that be enough, or at least be better than nothing? Cost is a major for me. There are sublingual tablets but they all contain additives that I can’t tolerate either so at this stage the patches seem my only option. My doctor still refuses to believe that I have a B12 problem, even though my tongue burns and my RBC is borderline…still.

    Any help would be appreciated.

    Thank-you

    • Amber says

      I don’t know about the patches, but the methylcobalamin I use has only cellulose as an additive. It’s Doctors Best Fully Active B12, and the price is really cheap on iherb. It comes as a powder in a capsule. I empty the capsule between my lip and lower teeth, and treat it like a sublingual. It’s been working great for me.

      • Rose says

        Amber…..How can you tell this product is working for you? I’m not sure it would absorb if it’s a powder. Do you have symptoms that go away taking this product, or do you have blood tests that show your levels are rising?

        Thanks

    • Greg says

      Hi Joe,
      You are quick to find the patch, but I am not sure it will deliver as much material as you need. There is a topical oil, which is just about to be released onto the market. It will deliver a much higher dose of VB12 and contains both Ado and MeCbl. I will post the link when it is out. The trial product has been used by a few people in the discussion as well as many others who are not on the post. It appears to work very well.
      If you have further questions you can contact me directly grj@mentorconsulting.net .
      Hopefully we can help you. Thanks for the link on the patch.
      Cheers,
      Greg

  116. Joe says

    I have Transcobalamin Deficiency. So, not matter how much B12 I take, I can never absorb enough to survive. My Mom died from this, and my siblings and other family members have the same thing. Isn’t there some way to get the transcobalamin that we need? Injections? Transfusions?

    • Greg says

      Hi Joe,.
      You certainly have a curious condition. They have cloned TCII and determined the crystal structure, but I don’t think it is made under GMP conditions for injection or transdermal delivery. Theoretically there may be a work around the condition which doesn’t involve VB12.
      Firstly, you technically need both Ado and MeCbl. Now the AdoCbl is mainly needed for energy production, but only for some carbon sources, which mainly are odd chain fatty acids, and some of the amino acids. You don’t need it for metabolism of sugar for energy, most fats, and many amino acids. This would mean if you were to seriously control your diet you could work around it to a certain extent.
      Secondly, you need methylcobalamin for methyl-transfer reactions to load up S-adenosylmethione (SAM) from 5MTHF, and to cycle it back to THF (tetrahydrofolate). Now if you keep taking folate, but NOT 5MTHF, you should still be able to do the DNA synthesis, you will gradually accumulate 5MTHF, which will increase in serum and then be excreted. So your problem now is making SAM. Have you considered getting shots of SAM? You would then be able to use SAM for all the other processes that you need it for, and if you take high enough levels of vitamin 6, you should be able to keep your homocysteine levels down and your glutathione levels up.
      I don’t know of anyone who has tried this, but maybe there is someone “listening” to our conversation that may have.

      • Joe says

        Hi Greg,

        Thank you so much, for the information. I am taking Cerefolin NAC, B-100 (2 tablets), Cyancobalamin Liquid (1500mcg), and Acetyl-L Carnitine, D3 (2000iu), Androgel, and Digestive Enzymes. My digestion is a farce. Every time I eat, I retain large amounts of fluid. Fats and proteins make it worse. My legs burn so bad, and eating always makes the burning worse. The Cerefolin NAC has helped my anxiety, some. My cognitive function is declining, and my doctor said that he is concerned about my mitochondria. My homocysteine levels are high and rising. I just started the Acetyl-L Carnitine, and it has helped with my leg pain at night (a little, but still enough to tell the difference). So, I just need to get that balance of supplements and diet that minimize my symptoms and keep my illness from progressing so quickly. Any suggestions, based on this info? I am desperate to try anything.

        • Finndian says

          Joe, if you risk dying of B12 deficiency ultimately, why are you taking only 1500 mcg cyancobalamin? Is there a reason for the low dose and the inferior type? I don’t have your condition and I take 5000mcg of more easily absorbed methylcobalamin.

          Is your doctor not treating this condition aggressively? Is he using methylcobalamin for the injections? How much and how often?

          • Joe says

            I forgot to mention that I am doing 1000mcg injections of cyancobalamin, every other week. The Cerefolin NAC contains L-methylfolate 5.6mg, Methylcobalamin 2mg, and N-acetylcysteine 600mg, So, I’m taking 3500mcg per day (not including the bi-weekly shots). Of course, it doesn’t matter how much I take, because my body lacks enough protein (transcobalamin) to transport the B12. I am always hopeful that a solution will come along,

            • Greg says

              Hi Joe,
              Thanks for the information, it helps to sort out what is going on.
              Regarding the bioavailability of various oral supplements, there is no conclusive evidence that MeCbl is taken up any better than Ado or CNCbl, and in fact 5 mg dose of MeCbl is around 1000 times the uptake capacity for VB12, so it is in vast excess. One could argue though that you would need AdoCbl as well as MeCbl. If you are MeCbl deficient, I don’t why anyone would prescribe 5-methylfolate instead of folate. 5-methylfolate is at the end of the folate cycle and builds up as an end product. It can’t go anywhere without MeCbl and so is not a useful analogue if you are MeCbl deficient. It cannot be converted back to Tetrahydrofolate without MeCbl, which you don’t have.
              It is curious about your increasing homocysteine levels as it would appear that you have enough/excess methionine for your needs and that you must be making SAM. Without MeCbl you can theoretically “move” Hcy to Cystathione, then cysteine with excess vitamin B6, which you may not be absorbing. I cannot follow the logic in taking N-acetylcysteine, as it will stop Hcy consumption/removal. i would be interested in hearing the logic if anyone has it.
              As for the mitochrondria, carnitine normally is formed from breakdown/conversion of trimethyllysine, and is used in fat metabolism to form energy from fat breakdown. If you don’t take your calories as fat you don’t need it. Thus you don’t need it for entering the Kreb’s cycle if you use sugars or amino acids as energy sources.
              As for loading your cells with VB12 (of either type) without the transporter, here you need to get the circulating concentration so high that it is non-specifically taken up from the circulation. This is sort of the theory behind the extra high dose oral supplementation idea. I don’t see that this is technically going to be possible from oral supplementation. The maximum absorbed dose is around 1% of that adminsitered (unless you have a transporter), so even a 5000 ug dose will only get 50 ug in. As this will not be on a VB12 transporter this will be lost so quickly from the circulation that it will barely have an effect. So yes injections or topical B12 are the way to go. These give a much higher bioavailability and so enhance your chances of uptake. The topical route will provide longer release with time, whilst the injectable route will give you a higher peak, but drop off very rapidly.
              I hope this is helpful.
              Cheers.

              • Mary says

                Wouldn’t his doc prescribe 5-methylfolate if he has the MTHFR genetic defect which prevents one from converting folate to 5-methylfolate?

                • Greg says

                  Hi Mary,
                  An interesting thought, and yes it depends upon what the deficiency/defect is.
                  Thus, if you have the MTHFR genetic defect, you cannot convert 5,10-methylenetetrahydrofolate (CH2-THF) to 5-methyl-tetrahydrofolate (CH3-THF, MTHF)., and hence your folate can’t cycle around and so you effectively cannot re-use folate. So if you give folate or MTHF, it should not make much of a difference, IF you have enough VB12. If you don’t have enough VB12, then you can’t now convert MTHF to THF, and so the 5MTHF would be wasted and would just appear as higher folate levels in serum, and you would still effectively be folate deficient inside the cell, although your serum levels would say you are not deficient.
                  Now if we look at the VB12 side of what is going on. In the conversion of MTHF to THF, hydroxocobalamin (OH-Cbl) accepts the methyl group from the MTHF and is converted to Methylvitamin B12 (MeCbl, methylcobalamin). So theoretically you would give OH-Cbl plus MTHF. In this scenario 5,10-methylenetetrahydrofolate (CH2-THF) could build up in the cell due to the mutation, except that thymidilate synthase converts it back to Dihydrofolate, and the folate cycle commences again..
                  Now if we look at the homocysteine to methionine conversion, here the homocysteine is converted to methionine by the addition of the methylgroup from MeCbl, which becomes OH-Cbl. In this scenario you could just give folate plus methylcobalamin. (In a nomral person the OH-Cbl would be converted back to MeCbl by the process described above).Now all of these reactions are subject to “feed-back” control, and it is hard to determine what effect a build up of any of the reaction products will have, which is why there is such a huge variation in effect depending upon how much VB12, folate and methionine is in the diet. It gets even more complicated when one looks at what the effect of increased vitamin B6 has on homocysteine removal, or the effect that thyroxin and vitamin B2 have on the folate cycle. So it gives you an idea about why your doctors might not be up to speed on the deficiency, there is quite a lot of biochemistry and organic chemistry that is involved, and they don’t actually study this.

  117. karine says

    I just got tested and it shows 522 pg/ml. Even being in the normal range, I still want to supplement. Are there any consequences for that? I have mild symptoms like fatigue, and I am a vegetarian, almost vegan for 10 years. Thanks!

    • Greg says

      Hi Karine,
      If you still have mild symptoms, I would still keep supplementing, particularly when you consider the long term consequences of being even mildly low (see discussion above). It is hard to tell without seeing the composition of your vegan diet, but you could also be marginally low in iron, zinc and calcium. Both zinc and iron are needed for energy, and calcium obviously for your bones. You could also be low in the other B group vitamins, but normally if you are on a good “grain” diet you can make up for it. As for the 522 pg/ml, remember that is only a serum measurement. Several studies have shown that serum levels, particularly after high dose supplementation do not reflect in increased tissue levels of VB12. Hence, if you were low (gradually decreasing over 10 years of vegan diet) you may need to supplement for at least that long.

      • Cynthia says

        Hi I have just seen my doctor to see if she would consider prescribing me more B12 injections as I am still very tired. She said that the fatigue is probably due to the folate deficiency, and that once those levels are up I would feel better.
        Gregg, I repeated the advice you gave me to her, and she was not interested and simply said that if I was not happy with her diagnosis I was free to go to another doctor! I live in Ireland and my family and I have been going to this practice for 40 years so it would be very difficult to go elsewhere.

        She has asked me to continue taking the folic acid for 12 weeks and then I will have another blood test. She assures me that I should see a change in my energy levels soon.

        My last blood test two weeks ago, after 5 B12 shots was;
        B12 757 range 189-1162
        Folic acid 2.6 range 2.7 – 20
        Potassium4.4 range 3.5 – 5.0
        Urea 3.5 range 2.5-6.7
        WBC 4.3 range 4 – 11
        RBC 4.2 range 3.8 – 5.2
        Haemoglobin 13.4 range 11.5 – 16.5
        haematocrit 0.39 range 0.37 – 0.47
        MCV 92.6 range 80 – 100
        MCH 32 range 27 – 32
        MCHC 34.4 range 32 – 37
        Platelets 195 range 150 – 400
        Neut 2.01 range 2.0 – 7.5
        lymph 1.98 range 1 – 3.5
        Monocytes 0.24 range 0.2 – 1.0
        Eosinophils 0.08 range 0.04 – 0.5
        Basophils 0.02 range 0 – 0.2

        Sorry for the long post. What changes do you think I should see in my next blood test if I continue to take the folic acid and no B12 shots.
        Also, how long can you be B12 deficient before you see a decline in your health?

        Thank you for any replies it is much appreciated.

        Cynthia

        • Greg says

          Hi Cynthia,
          Your questions certainly have prompted me to do a fair bit of literature searching, through which I may have come up with a potential answer. Your bloods look pretty good except that now your folate level is a bit low, which may be due to increased intracellular use. Also your MCH is a little high in other types of anaemia where the red blood cells are enlarged (for example, as a result of folic acid or vitamin B12 deficiency).
          Now there is a very common problem, particularly in women, which mimics the symptoms of vitamin B12 deficiency, and that is hypothyroidism, which is also curiously associated with vitamin B12 deficiency and anemia. In fact there appears to be an abnormally high percentage of people who are VB12 deficient who have hypothyroidism. The symptoms of hypothyroidism are as follows:
          • Fatigue
          • Weakness
          • Weight gain or increased difficulty losing weight
          • Coarse, dry hair
          • Dry, rough pale skin
          • Hair loss
          • Cold intolerance (you can’t tolerate cold temperatures like those around you)
          • Muscle cramps and frequent muscle aches
          • Constipation
          • Depression
          • Irritability
          • Memory loss
          • Abnormal menstrual cycles
          • Decreased libido
          You will see that many of them are similar to VB12 deficiency, which may correlate with the co-incidental hypothyroidism/vitamin B12 deficiency. So I would go and get your TSH levels checked and your T4 and T3 levels.
          Thus if you now have hypothyroidism, and you have supplemented with VB12, you can’t actually use it effectively as you don’t have normal T4/T3.
          If you want references for your doctor, contact me and I will send them on.
          Best wishes,
          Greg

        • Rose says

          Hi Cynthia…..Pardon me for butting in here, but were you aware that the Irish are particularly prone to gluten intolerance which leads to thyroid deficiency and B12 malabsorption plus about 300 other medical conditions? I just happen to know all this because I am of Irish decent and have a myrial of problems due to the late discovery that I am gluten intolerant. There are no obvious symptoms of gluten intolerance except that it presents iyself as a million other symptoms and conditions. For me in was chronic fatigue that finally brought about the discovery that gluten was the problem. After 2 days on a GF diet, the chronic fatigue had gone completely.

          One other thing is that doctors by and large will say that a TSH level of up to 4 or 5 is ‘normal’ when in fact it isn’t. In USA in particular it is widely considered that 2.5 should be the top level of normal.

          The Celiac Disease Center of the University of Chicago states that there are over 300 symptons and conditions linked to gluten intolerance.

          Cheers

          • c says

            Hi Rose, thanks for the input. I will read up on Gluten Intolerance and hypothyroidism. Unfortunately I don’t know much about either and my brain fog and concentration is so poor at the moment I am finding it difficult to take anything in!
            My last TSH result from my blood test 3 months ago was; TSH 1.15 range 0.05 – 4.94 and my glucose level was 4.8 range 3.9 – 5.8.

            Since starting my folic acid I have been feeling terrible. At night when i’m resting or in my bed I am getting terrible palpitations and twitches in my neck and an ache in my left back shoulder. Now maybe I just pulled a muscle and that’s why i’m getting the twitch I’m not sure. The palpitations are keeping me awake so I am extra fatigued. Also, the lump feeling in my throat is consistently there. I don’t have trouble swallowing food but it is difficult to swallow my saliva and it feels like im being choked. I’ve made an appointment to see a different doctor next week.

            Thanks all,
            Cynthia

  118. Cynthia says

    Hi this is a very informative site, unfortunately I haven’t had time to read all of it.
    My blood test last march showed a B12 level of 200. I was and still am very fatigued, but not may other symptoms. I get restless legs and burning feet when i’m trying to get to sleep, am cold most of the time and slight palpitations but if I hadn’t read about B12 deficiency I would have paid much attention to all this. I got 5 B12 injections, (don’t know how much or what they were called), one each week for 5 weeks. They took my bloods again a month later and the Doctor rang a couple of days ago and asked me to come in tomorrow as she said my Folate level is now too low. It was at 8.7 in March and now its at 2.2. I forgot to ask what my B12 is at now.
    My question is could the B12 shots have cause my Folate levels to drop? Also, this is all new to me and a bit confusing could anyone give me advise on what questions I should ask the doctor and what would be the next step for me.

    Any advise would be gratefully appreciated as there seems to be so much differing opinions on B12 and Folate levels.

    Thanks

    • Amber says

      Hi Cynthia,
      B12 and Folate work together in the same metabolic pathway. You’ll probably want to supplement methylfolate along with your methylB12. Also, low potassium and low magnesium can cause the restless legs and other symptoms you describe. I’m not a doctor, but from the comments and other B12 forums, it seems all these nutrients are often low together and all need to be looked into and probably supplemented as you recover. I personally feel so much better on a methylB12, methylfolate, and supporting nutrients protocol. Night and day improvement in my health. Unless you have a naturopath or alternative minded doctor, many are not educated about the need for B12, the ways it can be supplemented, and the needed supporting nutrients.

      • Greg says

        Hi Cynthia,
        It is quite important to know which type of VB12 you were shot up with.
        There are two active forms in the body, methylVB12, which works in concert with folate and is very important for proper functioning neurones and for production of red blood cells. The other form is adenosylcobalamin, which is very important for energy production in the cellular power-houses (mitochondria). If you are deficient in methylVB12, your apparent levels of folate may be artificially higher in serum, such that once you are given the VB12 shot, the folate is then taken up and used by cells, so that the serum folate levels drop significantly. It looks like that is what has happened to you, which will make you slightly folate deficient, and will mean that you either need to eat more leafy green fresh vegetables, or you need folate supplements.
        I have a web-site with much information on vitamin B12 deficiency, although it does not have information as yet on the link up with folate. I am working on that and hopefully can add it soon.
        Check out http://vitaminb12deficiency.net.au/
        The good news is that you have recognized the deficiency. If you are still very tired after those shots, you may need adenosylcobalamin to directly drive the energy system, or mixed B group vitamins, plus zinc and Q10. Vitamins B1, B2, B3, B5 and B12 are all directly involved in the energy production, so too is zinc and Q10, although most people make enough Q10.
        You also need iron for energy, both to carry oxygen in your red blood cells and in the electron transport chain. I presume though that your doctor would have checked this.
        All this depends on why you are VB12 deficient, dietary, medication use, or genetic, or even having recently been pregnant..

    • heidi says

      Make sure you take methylfolate, not folic acid. Chris Kresser wrote a great article about the difference which you can find by searching this site at the bottom of the page. Whether or not you continue with B12 shots you can buy methylB12 tablets to use sublingually every day, that way you are getting the B12 you need daily, not just once a week or once a month. You might also want to take a B complex daily, one without folic acid. Once you start folate along with B12, you may need to take extra potassium. keep reading!

      • Cynthia says

        Hi Guys, thanks for all your replies, they have helped a lot more than my doctor did! I asked her could the B12 shots have brought down the Folate level and she said she “didn’t know”.
        Greg I am not sure which shots I got, but I will find out. But what you say above would explain why my folate levels dropped which is nice to know, thanks.

        Heidi, my doctor prescribed a folic acid tab. 5 mg, but I will get the methylfolate and take it instead. Thanks for the tip on the potassium. My levels there are good at the moment so I don’t want them dropping too. There is so much to read and learn on this subject!

        My B12 levels are now back up to 700 and the doctor was happy with this, so hopefully I’ll get my folate levels up and everything will stay up! I don’t know for sure why my levels dropped, more than likely due to yo yo dieting although I did feel I was eating healthfully, but maybe not good enough. I suppose I’ll find out in 3 months when I go back for my next blood test.

        Just one more question, would a deficiency in B12 and folate affect you white and red blood counts?

        Thanks all

        • Greg says

          Hi Cynthia,
          I am not surprised that your doctor did not know about the folate levels, for some reason it is very poorly understood by most medicos, although the interaction is really quite complex.
          Both folate, vitamin B6 and vitamin B12 are essential for all cell division and also for properly folding proteins synthesized in the body. Thus if you are deficient in either of them you have a general problem with cell division and protein synthesis. Thus rapidly dividing cells such as replacement of white and red blood cells will be affected in either deficiency. These cells are very easy to measure by blood counts. What is more of a worry are the cells that you cannot measure easily. Thus, the cells that line your intestine are also rapidly replaced, but you can’t easily see that, BUT it will lead to problems with absorption of vitamins such as vitamin B12 and folate, which makes the problem worse.
          What I would urge you to do is to make sure that you continue with the vitamin B12 supplementation, as your transient increase in serum vitamin B12 generally does not last, particularly if you have not found out why.

          • finndian says

            It is poorly understood by medics because they receive virtually no training in nutrition in medical school. Tingling feet means tight shoes to most doctors. Only California in recent legislation requires future doctors receive some training in nutrition in medical school.

        • heidi says

          Keep in mind that the blood tests for both B12 and folate are only measuring the fact that you are now supplementing. A high reading at this point does NOT mean you should stop B12 or folate, it only means the supplements are in your bloodstream. IMO, a waste of money.

          • Greg says

            Heidi,
            I totally agree. The problem with taking supplements in the initial phase is that although the blood levels are up, it does not mean the stores are replenished. This is a major problem with vitamin B12. Thus even those people who take regular injections of vitamin B12 (every 4-6 weeks) still have to keep taking them. This in itself tells you that the stores of VB12 are not replenished.
            If you look at those that go to a vegan diet, it can take up to 5 years to become deficient, if they started with good levels. This is because the amount that can be taken into the tissues and stored at any one time is very low as the VB12 has to be on a special transport protein. A bit like trying to fill a swimming pool with a thimble. It is going to take a very long time, particularly if the pool has a leak in it (ie the VB12 is being continuously used). This fact is generally not understood by those who are deficient. Just as it takes up to 5 years for the vegans to become deficient, it may take at least this long to fully recharge the system, IF you continuously keep up a constant supply of excess VB12. It is our belief that once you are even marginally deficient you are on continual supplementation for the rest of your life. This is particularly relevant if you look at the other associated problems with deficiency, such as dementia, MS, AD, CVD, etc, peripheral neuropathy, macular degeneration, optic neuropathy. Measured VB12 deficiency is an early warning sign, which should be headed, but generally is not. The biggest problem with this is that even high dose oral supplementation does not fully recharge the system, although it may stop the situation getting worse. If you have any problems believing this just go and visit the advanced dementia units in old peoples homes. This is a situation you definitely want to avoid! Hopefully our work can prevent this.

  119. Hope Sanford says

    I’m a 61 yr old vegetarian and inadvertently, mostly vegan. I have been thin all my life; when my husband got ill & died 9 yrs ago, I got thinner- 5’7, 106 lbs. I’ve been SO tired for the past 7 years and kept being told 1)You should increase the dose of antidepressant and/or 2)Everyone in America is tired. Your CBC is normal. A month ago a new doc I saw for something totally unrelated suggested trying a B12 injection, as it is cheap. I did not expect any changes as I’ve been taking it sublingually with no results. It makes a BIG difference. I feel WAY better. I am quite surprised and grateful.

    • robsct says

      Hope, I had a very similar experience and felt like I had more energy and muscle strength after starting B12 shots. I had to increase my intake of Potassium to about 2400 mg a day as my body was using more potassium because it was no longer starved for B12. I still have problems but the B12 shots helped a lot.

      • Gregory says

        Dear Hope,
        I am not at all surprised at the difference between the shots and the sublingual. The sublingual is not really a very good mode of delivery, and there is no conclusive evidence that shows it is better than high dose tablets. It is based upon an incorrect premise that there are blood vessels near the surface of the underside of the tongue and so the material should go into them. Well that is the problem, it doesn’t, and I don’t know of any study that has shown it does. In the intestine you have a massive area for uptake of vitamin B12, much, much bigger than under the tongue. Best estimates for 1 mg sublingual tablet, 1 mg sublingual spray or 1 mg oral tablet is that up to 10 ug gets in. If you are deficient, you are down somewhere between 10-50 mg, or around 1,000 to 50,000 times more than you can aborb by either of the 3 methods. That is why the shots are so much better. It is also why we are working on a transdermal oil that gets around the same amount as the shots.

    • heidi says

      I started to get excellent results from sublingual B12 when I began to put the tablet between my cheek and gum and hold it there for 1-2 hours. It is absorbed slowly, chewing it up doesn’t work. If you continue with B12 shots, make sure you are getting the active form, methylcobalamin, not the cheap imitation stuff.
      I also use adenosylcobalamin, the other active form of b12, marketed as dibencozide, with great results.

  120. sue says

    HI, everyone. Just wanted to say how we underestimate Vitamin B12. My son has ASpergers syndrome. Last winter, out of the blue, he had Total Bell’s Palsy. It took him 6 months for the cheek to move, and 12 months for the nerve totally recuperate, even though his left side of face is still drooping. Everyone(including my son’s father, who is a doctor) were saying that Bell’s palsy comes only once. Well, guess what? 4 weeks ago, my son ‘s right side of the face was affected with nasty Bell’s palsy again!! His neurologist gave him anti viral and steroid. When my son came back(he is 21 years old, he was visiting his father during 2nd Bell’s occurrence) , I read so much about B12 methylcobalamine. I immediately gave him injections every other day. BELIEVE ME, AFTER 1ST INJECTION, HIS LIP STARTED MOVING. AFTER ONE WEEK, HIS FACE HAS COMPLETELY HEALED, MOVING, SMILING!!!!! MY SON’S FATHER, WHO IS A DOCTOR, SAID THAT THIS WAS JUST A COINCIDENCE . i give my son injections 1mg every other day. Hi stopped having twitches(he always had them), he is smiling and moving his lips.

    • Finndian says

      Sue, I’d read all about Bell’s palsy being helped by B12 injections so when I developed a paralyzed vocal cord I asked the neurologist about B12 shots. I brought in the studies about B12 and Bells palsy and he scoffed and refused to give me B12. I explained that I hadn’t eaten red meat in 25 years and previously had numerous unexplained nerve problems in my back and arms. He instead wanted to get me into surgery to inject my vocal cord to plump it up with restalyne. This simple procedure was billed to my insurance at $22,000! I stupidly let him do it.

      I went to another doctor who prescribed the methylcobalamin and showed me how to inject it myself. The original neurologist commented that I was the fastest he’d ever seen someone recover from idiopathic vocal cord paralysis… I never told him I was injecting B12 weekly. Vocal cord paralysis has a 30% or more likelihood of becoming permanent as time wears on… no way in hell I wasn’t going to start injecting B12 with or without his consent.

      I must have been B12 deficient for years since after the months of injecting not only did my nerve conditions disappear but so did my life long problem with canker sores. At least one study links chronic canker sores with B12 deficiency. I also show antibodies to gluten which certainly will interfere with my own production of b12 in my gut.

      Autism spectrum disorders like your sons often cause B-vitamin deficiency as well as Magnesium… the same deficiencies that people with food allergies develop. I can see why some doctors immediately suspected diet with the explosion of autism happening.

    • Ann says

      Did you bother to read the article? If so you would see that nutritional yeast does not contain B12, but B12 analogues that can mask a B12 deficiency. I think you are using Chris’ article to try and get traffic to your blog post.

      • Greg says

        Hi to all, and particularly those who are suffering VB12 deficiency and trying to deal with it or may be about to bring it on by switching away from meat, there is a very salient article on the effect of VB12 deficiency on the nervous system. Reading it, I wouldn’t give up meat, or if I did I would be taking megadose oral or transdermal B12 all the time. You don’t want to go down the irreversible road to deficiency.
        See Lachner C, Steinle NI, Regenold WT. The neuropsychiatry of vitamin B12 deficiency in elderly patients. J Neuropsychiatry Clin Neurosci. 2012 Winter;24(1):5-15. doi: 10.1176/appi.neuropsych.11020052
        You can either get a copy of the article from the author who seems a lovely person, or I can send you one if you want.
        grj@mentorconsulting.net

        • Jinny says

          Hi Greg,

          I have been following the comments to this article almost since the beginning. I have noticed that there are a lot of people who comment on this article who eat meat and still have a deficiency with B12. It is more about being able to absorb the B12, which seems to be a major issue for a lot of people. That is why supplementing with a sublingual form of B12 is so important, regardless of ones diet. I used Enzymatic Therapy B12 Infusion according to the protocol of a guy on here named Fredd, who healed himself from a wheelchair with a very specific protocol.
          My husband and I have been vegan’s for 8 years. I have a B12 deficiency and he does not. I keep everything in check following some of Fredd’s protocol and my husband takes B12 here and there, but has absolutely no symptoms of any deficiencies. Since I started Fredd’s protocol I have no symptoms and a consistent flow of energy.

          • Greg says

            Hi Jinny,
            Well I am certianly glad that you have no overt sytmptoms of deficiency. It is of course very hard to say without seeing your MMA and Hcy levels, whether you have achieved normal levels of VB12.. Sub-clinical deficiency is very insidious, and energy levels may not be that predictive. If you see all of the possible sequelae of sub-clinical deficiency, I would want to make sure your VB12 levels were well over 300 pmol/L, or 400 pg/ml. Similarly, whilst you may have elevated your levels in serum, the real worry is the CNS, where so many of the long term problems occur, dementia, neuritis, Alzheimer’s, PD, schizophrenia, etc. Similarly if your HCY levels are not below 10-11 then your risk of CVD is so much higher, which is now touted as an unexpected sequelae of a vegetarian life style, but it is still controversial, particularly in the non-Science literature.
            You are right about absorption, in that many cases of deficiency also come from taking ant-acids, metformin use, or having gastritis, bowel resections, bacterial overgrowth, H.pylori, etc,.
            In these people oral, or sublingual, will not be anywhere near as effective as transdermal of injected VB12 as they don’t have normal uptake mechanisms for VB12. If your intestine is normal then sub-lingual (which sounds so much harder and less pleasant than topical) has the effect of slow release of material, which helps in uptake and gets more VB12 onto haptocorrin, although it is only the same as chewing your food as far as saliva goes. As for the amount of VB12 you get in from meat, remember it is not all meat. Chicken has VB12 in it, but you would have to eat 2 kg (4 lbs) per day to get adequate. If you did do that you would be so large that VB12 deficiency may only be a small part of your problems. Good to keep these discussions going. Cheers.

  121. Aakash says

    Guys i need a small advice from you all who have experienced the vitamin b12 def. 3 months back on a random morning i woke up with dizziness and weakness. i thought this could be bcos of less sleep so ignored it but on the same day i started feeling extreme fatigue, heavy eyes, severe leg pain and tingling and pinch feeling in legs. i was full of sleep as if i havent slept for weeks. i had mild upset stomach. i made a blood test of vitamin d and vitamin d 12 and my levels for vitamin d was 10 and for vitamin b12 was 256 which my gp told was a deficiency and bcoz of this i was suffering severe weakness and chronic fatigue. i almost used to sleep for 14 hours in a day. this all went for almost 2 months. my gp gave me some injections with tablets for vit d and b12. now i feel normal but not totally fine. after 2 months i was perfectly fine for a week but again this weakness came back. i m jus worried about this as i was always fit and never had any health issues in my life. again i get weak and my leg pain starts and i end up sleeping for an hour or so.
    i would be very greatful to u all if u can jus help me and give ur advice on this.. Thank You :)

    • Amber says

      Hi Aakash,
      In addition to B12, please make sure you are getting enough potassium and magnesium, as it can cause these sorts of issues. Magnesium especially helped me with my sleep and tingly legs problem. Do a little googling to see which magnesium is best to take, as there are different forms.

      • Aakash says

        Thanks Amber,
        i have been prescribed with some medicines and i am having that but the problem is that when i stopped it for a while these things again started but it was mild as compared to that it was in the start. i mean are these symptoms normal in the b12 deficiency bcoz im worried. like sleeping for long time, always weak and sleepy even after sleeping for 12-14 hrs. and ya now recently i have been started getting dry skin as well. may be this is bcoz of the desert climate as i live in the middle east and summer has started here but then also was just worried that are all these things related to def of b12 and D.

        • Amber says

          I’m a little unclear. You were taking vit. D and B12 tablets, it was helping, but then you stopped taking it? Or it was some other medicine you were taking?

  122. julie says

    Hello, My blood tests came back HCt 36, HGB 11.9 RBC 4.12 Ferritin6.8 and B12 228.Could my B12 level which is still the normal range be the cause of my symptoms, tiredness not affected by lots of sleep,breathlessness, pins and needles in legs and palms of hands,a strange feeling of being punch drunk, twitchy legs, brain fog,and general feeling under the weather? All my other blood levels seem normal including folic acid. I would really appreciate some advice, I am usually a very active and sporty year 40 year old woman, and over the last 6 months have steadily dropped all the activities I love through lack of energy and exhaustion. My forgetfullness and lack of mental clarity is frightening me and I sometimes feel like I am going mad! I would really like to get my life back on track and get back my ‘get up and go!’ I would be very grateful for any advice.

    • Gregory says

      Hi Julie,
      Your symptoms of forgetfulness, lack of mental clarity, tiredness, pins and needles, twitchy legs (restless leg syndrome) and generally feeling under the weather certainly sound like VB12 deficiency.
      Your VB12 level, if is is 228pg/ml, or even 228 pmol/L would all be regarded as low. Our research shows that sub-clinical deficiency starts at around 250-260 pmol/L or 340 pg/ml, so you are considerably below this. Chris has quite a lot of information on his site, but there is more at http://www.mentorconsulting.net/VB12Home.htm

      • julie says

        Hi, i was wondering, I have started supplementing for my low B12 and iron, how long on average should it take for me to get my zap back? Should I feel a significant energy increase or or is it typically a slow, steady process? Is there a guideline to how long it should take to feel 100% again?

        • Julee says

          I have been taking the B-12 for about four months and still do not feel any more energy. I am not sure how long it takes.

          • Greg says

            HI Julee and Julie,
            The B12 and zap is a strange thing. It normally needs quite high levels of VB12 to get it, which you normally get from shots, but you can also get from transdermOil VB12. You will need adenosylcobalamin or OHCbl preferably. In addition, you also need to be having at least RDA amounts of B1, B2, B3 and B5, as these are all used in the energy (Krebb’s, TCA, Citric acid cycle). If these are low the energy cycle can’t turn.
            Another alternative is low thyroxin levels, which is very common in women as they get older. If you suffer from hyopthyroidism, many of the symptoms are similar to VB12 deficiency. Also up to 20% of people who are hypothyroidic are also VB12 deficient.

            • sgujar says

              Hi Greg,
              one day before 2 and a half months i woke up and i started having riniging ears,depression,upset stomach, mbrain fog and memory problems including shortage of breath and lack of energy.I went to the doctor did cbc and had vitamin b12 low as 186 and doctor gave me jamieson 1000 mcg sublinguial ,i used for 2 months had a little difference but my memory got worst and had brain fog including blurred vision.I switched to ola loa hydroxycobalamin and magnesium from natural health and foods and no difference 2 weeks.I dont know what to do as its killing my social life coudnt do anything as i have also skipped my exams because of poor memory and brain fog.I took one injection methylcobalamin 5000 mcg from a naturopath a week ago but didnt felt anything instead my memory and brain fog is becoming worst and i also have pain in my legs.Now i have been to my school’s health doctor and she asked me to do tests for b12 including glucose,potassium,HbA1C,TSH,creatinine,uric acid,sodium,chloride,ALT vit B12 and ferritin.She said if its only b12 she will start injections but she wants to check the others as well to make sure if no other vitamin deficiency.I am wondering if one injection didnt gave me any difference which form of injection should i take or any other suggestion as it is killing education and social life both.

              • Greg says

                Hi sgujar, apart from you very low B12 levels measured in serum, one extra way you can determine that you are functionally vitamin B12 deficient is to have your homocysteine and methylmalonic acid levels tested. If homocysteine is high you need methyl, if MMA is high you need adenosylcobalamin. There is one caveat to this, and if you have MTHFR or similar mutations, you may need methyl but many MTHFR individuals don’t seem to make a lot of homocysteine, as they “just can’t”. One shot of methyl won’t necessarily boost your energy levels. You need adenosyl to fire up your mitochondria.

  123. Gregory says

    Hi Lorraine,
    If your B12 is sooooo low, you really will have trouble getting your levels up over 300 and keeping them there. Data out on MMA and Hcy says that you are going to have problems if you are below 257 pmol/L, so you are way low. Your injections will only give you temporary improvement for reasons that you will see on the discussion. For more you can check out
    http://www.mentorconsulting.net/VB12Home.htm
    where I have been trying to put much data on.
    You will find it hard to get the medicos to understand all this, for some reason they appear VERY uninformed about B12 deficiency.
    Good luck,
    You can email me direct if you want info that you can’t find.
    grj@mentorconsulting.net

    • Felicia says

      Lorraine,
      I too was diagnosed with pernicious anemia, and thankfully found a naturopath who could identify it and treat it (B12 injections like you are doing plus diet and supplements). Greg has also been really helpful with information so I can do the best I can with where I am. I never tested my serum B12 before I started injections so have no idea what it was then, but now things are much better overall. I hope you can hang in there and get the help you need — working with a practitioner who understands this is not always easy, but so important. And Greg has some valuable data to support you hopefully so you can find some relief. I started out with daily B12 injections then went to 2x a week and now am on 1x a week and that works great for me. I never went to sublinguals because it was believed I couldn’t absorb them as well. For others, those work great. It took a long time (2 years) to see things really turn around but it has so been worth it. If I can be of help to you at all, please let me know.

    • Lorraine says

      Thank you for the information I will look into the information you have advised. I got my last shot yesterday and no further information I was told to take 100 mg of b12 tablet form yes 100mg the pharmacist thought this was hilarious and gave me the sublingual 1000 apparently you just have to deal with it. It is not funny when you can’t walk in a straight line and everyone thinks you are drunk. The Dr’s don’t seem to want to discover the real picture.
      Thanks for the advice

  124. Lorraine Saipe says

    Hi,
    I have just found this post last Friday I was diagnosed with Pernicious Anemia after a test for the antibodies I do not have this. I have had 2 injections of B12 and will get another tomorrow and then he says that I can’t have any more and will have to go onto tablets. My B12 was 130 and folate was 1030 my problem is I am walking around like a drunk and this has got worse today. I am having severe bowel problems and have organised to get this checked out within a month. My concern is that the damage is permanent I already have a permanent back injury and am scared of falling and causing more damage. I initially thought that my bp tablets had knocked out the potassium as my bp was dropping low and I was vague in the head then the tingling in the hands and feet started. Any advise you can give me would be appreciated.
    Thanks Lorraine

  125. Lily says

    SORRY FOR THE ‘SHOUTY’ CAPITAL LETTERS, BUT I THOUGHT THEY MIGHT GARNER MY COMMENT A LITTLE MORE ATTENTION AMONGST THE APPROXIMATELY 1000 COMMENTS THAT ARE IN THE EVER-EXPANDING DISCUSSION SECTION HERE! :-)

    I AM JUST LETTING READERS OF THIS B12 ARTICLE (PUBLISHED MAY 2011) KNOW THAT CHRIS KRESSER ACTUALLY WROTE A FOLLOW-UP ARTICLE ABOUT B12 DEFICIENCY ON JANUARY 18, 2013.

    ADDITIONALLY, HE PROVIDED AT THE END OF THAT FOLLOW-UP ARTICLE HIS SUGGESTED LIST OF THE *FOUR* SUPPLEMENTS (BRANDS, TYPES, AND DOSAGES) TO TAKE IF YOU WISH TO REPLENISH YOUR B12.

    PLEASE CHECK OUT HIS “NEW” POST ON B12 TO GET HIS LATEST THOUGHTS ON B12 DEFICIENCY AND SUPPLEMENTATION.

    THE DIRECT LINK TO IT IS: http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency

    • Felicia says

      Wow, thanks Lily, I did not see the other article until you shouted it out, so much appreciated. Lots more info in that piece and the comments, very helpful!

  126. Georgette Toews says

    My husband has been diagnosed with B12 deficiency after complaining of extreme fatigue. He is 80 years old but very active bicycling 3000 miles a year. He had cerebral arteritis last year and was on prednisone for the entire year. He came off it in October. While on the prednisone, his energy levels dropped a lot and his rheumatologist has said this may be the “new normal”. However, he has suddenly experienced an even greater fatigue. His B 12 level is 186pg/mL. Total iron 104. All other labs seem normal. His doctor has ordered B12 shots, 3 over 3 months. He had one shot yesterday and has not achieved any relief yet. What can he expect from the shots and could the prednisone have anything to do with the deficiency?. Thank you.

  127. Melinmo says

    Chris, appreciate you making this post available for extended commentary. I just started Jarrow Methyl B-12 two weeks ago and then found Fredd’s protocol yesterday. Additional supplements should arrive tomorrow. My mother was diagnosed with MS 12 years ago, so when I started having neuro symptoms four years ago, I assumed that’s what I had. I have a long history of symptoms that I haven’t sought medical attention for, but I have been diagnosed at various times with UC, GERD, gastritis, allergies, chronic gingivitis which doesn’t respond to treatment, and most recently estrogen dominance.

    By God’s grace and a healthy lifestyle (I have been weight training for over 20 years), I no longer have symptoms of any of these conditions except estrogen dominance and gingivitis (though I’ve had diminished symptoms of these since starting B12). I had PVCs when I was pg with my first 17 years ago which the cardiologist said were normal. When the neuro symptoms started four years ago, the PVCs were back. They have been mild and scarce until the last several months when I’ve had the sensation that my heart has completely stopped and I feel like I’m going to pass out. Terrified me as I have not experienced this sensation before. I know it isn’t anxiety related (I’m a psychologist).

    By the way, my mother’s B12 level hasn’t been checked. She just started taking Methyl B12 at my request and I will probably have a hard time getting her to try more as she is very trusting of her docs. My question is this: Since taking the B12, I’ve been excessively thirsty, the palpitations got worse, have had increased dizziness, pulse dropped into the 50s, had more twitching, an edgy feeling (like I’m hopped up on caffeine) and I’m experiencing a burning sensation in my lips, fingertips and feet. I have been taking one to two Potassium supps (the ones around 500mg) a day for the past few days when I discovered you need more with B12. Are these all symptoms of potassium deficiency or am I experiencing some healing?

    I am unwilling to see a physician for these symptoms because I know that they won’t give me the tests I want, will put something on my medical record that may make it impossible for me to get insurance if I need to change plans in the future, and will want to treat me with immuno-suppressive drugs that have killed a friend of mine (giving her cancer). At the same time, I don’t want to die because I’ve got a potassium or other deficiency that isn’t being sufficiently treated.

    I’m not going to bore everyone with a long list of symptoms, but I realized yesterday that I constantly have skin peeling from the inside of my mouth. I have always thought of that as normal, just disposing of it like you’d blow your nose. I now know that isn’t normal at all! For the second time in four years, I’m also experiencing considerable hair loss. How long should it take before I stop losing so much hair?

    Thanks in advance for any information or encouragement.

    • Amber says

      Melinmo,
      Someone else pointed out that along with potassium, you need to watch out for magnesium. I was also getting twitchy and edgy sensations (like restless legs) and I added a nightly magnesium to my routine. It really helped.

      • Melinmo says

        Thanks, Amber. I already take quite a bit of magnesium, so I don’t think that’s it. How far along in this process are you?

        • Amber says

          Hi Melinmo, I’ve been doing Freddds protocol for about a month and half now. It’s really helping me. In fact, I just picked up my recent lab results, and compared to 4 months ago, my blood cell numbers are slightly higher (I’ve been anemic all my life, so this is a very good thing!!! woohooo!)
          Sorry, I don’t know what else could be causing your side effects. As for hair loss, which has been a major problem for me, it FINALLY seems to be lessening since I added a B-complex to the mix a week and half ago. I’m probably low in another B. I had bad reactions to other B complexes, so it took me a while to find one which suited me. Now I take Swanson Ultra Activated B complex, which I’m doing well on.
          I strongly suspect I have the variants of MTHFR gene which limit my ability to process folate. I was surprised by my recent lab results…B12 serum was in normal range (708 pg/ml), but folic acid number was in the “excessive” range, at >24.00 ng/ml. Folic acid can build up in the blood when there’s not enough MTHFR to process it to the active form (as far as I understand). And of course, without active folate, the B12 is then unable to be processed and hence B12 deficiency symptoms. Unfortunately my useless doctor refused to test homocystiene or MMA, which could clarify things for me. Nevertheless, I ordered a 23andMe test, so hopefully will have my answers soon.
          I hope you also figure out whats going on!

  128. Arunnie says

    I’m having headache and tinnitus in my ear for long time. Sleep disorder and IBS also giving me problem. Unable to focus / concentrate on my work and took several absenses. I had sleep study and even rented CPAP and used. But no improvement at all.
    All kinds of blood test was done and everything was normal. I met psychiatrist and was with anti-depressent for 1 year. because of anti-depressant my problem was solved little, but core problems are not solved. i’m unable to wakeup in morning and feel tired and uninterested. it seems to be Chronic Fatigue syndrome.

    For last one month i’m taking magnesium supplement and feeling good at morning. i’m able to wakeup at morning but not fully cured. ( Due to IBS for long time, essential mineral like magnesium was not absorbed properly )

    Now i’m having headache and slight giddiness still.

    I don’t know what to do. I need help from anyone who experienced the same symtoms of mine.

  129. karina says

    I am 33 and have a lot of symptoms of b12 dif and get b12 shots for my fatigue but when I asked my naturopath to test me if I actually have defficiency she said that most of the the tests are not accurate and they do not tell how much of b12 is stored in the body. Is she right?

    • Freddd says

      Hi Karina,

      She is right. However, you made need other forms of b12, ie AdoCbl, MeCbl as well as l-methylfolate and L-carnitine fumarate. These four susing succeed in getting energy production and healing going. Other vitamins and ,inerals are needed too. But the test just can’t tell you anything useful, espcially not after an injection, and before they can only say how bad it is, not what willl work. They dfon;t interpret them properly. Check out those lists of symptoms a few posts above this. Find you symptoms.

  130. Freddd says

    Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1
    Others mentioned similar patterns and variations.
    23. Initially – Mecbl
    24. +5 months 400mcg SAM-E
    25. + 4 months AdoCbl
    26. + 3 months titrate +50mg zinc
    27. +4 years 400mcg Metafolin
    28. +1 year LCF
    29. + 1 month TMG 1000mg/day
    30. 30mg MeCbl injections (3 or 4) daily,
    31. +0 Reduce SAM-e to 200mcg
    32. + 4 years remove TMG
    33. +6 months increase SAM-E to 800mcg
    14 Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far

    Sexual related symptoms, both men and women – These responded with the most response to lesser responses in order to MeCbl, Metafolin (l-methylfolate), AdoCbl, L-carnitine fumarate
    reduced libido – loss of sexual desire
    loss of orgasmic intensity
    unsatisfying orgasms
    inability to orgasm
    loss and/or change of genital sensations
    burning genital skin sensation
    unable to feel aroused
    numb genital skin
    low sex hormones

    MEN

    In order of response – MeCbl, AdoCbl

    low testosterone men

    In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate

    erectile disfunction men

    In order of response – MeCbl, Metafolin, AdoCbl

    low sperm count
    poor sperm motility
    Poor sperm quality
    no sperm

    WOMEN

    In order of response – MeCbl, AdoCbl

    low testosterone
    low estrogen

    In order of response – MeCbl, Metafolin, AdoCbl, L-carnitine fumarate

    post partum depression
    post partum psychosis

    In order of response – MeCbl, Metafolin, AdoCbl

    Frequent miscarriage

    In order of response – MeCbl, Metafolin

    False positive pap smears, defective cells
    menstrual symptoms

  131. Freddd says

    Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1
    Others mentioned similar patterns and variations.
    12. Initially – Mecbl
    13. +5 months 400mcg SAM-E
    14. + 4 months AdoCbl
    15. + 3 months titrate +50mg zinc
    16. +4 years 400mcg Metafolin
    17. +1 year LCF
    18. + 1 month TMG 1000mg/day
    19. 30mg MeCbl injections (3 or 4) daily,
    20. +0 Reduce SAM-e to 200mcg
    21. + 4 years remove TMG
    22. +6 months increase SAM-E to 800mcg
    13 Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far

    MeCbl – AdoCbl – L-carnitine fumarate – Metafolin

    shortness of breath, oxygen hunger
    heart palpitations

    MeCbl – AdoCbl – L-carnitine fumarate

    extremely sore neck muscles reversing normal curvature of neck
    painfully tight, stiff muscles, especially legs and arms
    frequent muscle spasms anywhere in body
    weak pulse

    MeCbl – AdoCbl

    Confusion
    Disorientation
    Difficulty in word finding

    MeCbl – AdoCbl – Metafolin

    irritable
    depression
    SAD – Seasonal Affective Disorder
    mental slowing
    personality changes
    chronic malaise
    poor concentration
    moodiness
    tiredness
    mood swings
    memory loss
    listlessness
    impaired connection to others
    mentally fuzzy, foggy, brainfog
    dizziness – even unable to walk
    Vertigo

    MeCbl – Metafolin – AdoCbl – L-carnitine fumarate

    psychosis, including many of the most florid psychoses seen in literature, megaloblastic madness
    Alzheimer’s
    delirium
    dementia
    paranoia
    delusions
    hallucinations – multisensory
    anxiety or tension
    nervousness
    mania
    Widespread pain throughout body

    A caution, those with anxiety and panic symptoms may respond with extreme moods of increased fear, anxiety, panic, anger rage, homicidal rage and profound depression, usually in repeatable sequences following LCF or ALCAR even at levels of 1mg oral. A micro titration of carnitine would be cautious. While most find the moods intolerable, certain persons have been able to tolerate these (both past) and current, to find they can fade after some months of consumption. A few people may find similar, maybe somewhat lesser, response to MeCbl or more likely AdoCbl. As these are less controllable than LCF which can be micro dosed, they should be considered first.

  132. Freddd says

    Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13, Version 1.1
    Others mentioned similar patterns and variations.
    1. Initially – Mecbl
    2. +5 months 400mcg SAM-E
    3. + 4 months AdoCbl
    4. + 3 months titrate +50mg zinc
    5. +4 years 400mcg Metafolin
    6. +1 year LCF
    7. + 1 month TMG 1000mg/day
    8. 30mg MeCbl injections (3 or 4) daily,
    9. +0 Reduce SAM-e to 200mcg
    10. + 4 years remove TMG
    11. +6 months increase SAM-E to 800mcg
    12. 12Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far.

    These symptoms are what responded very well to CNS penetrating doses of MeCbl either as 50mg sublingual single 4-5 hour dose or 4 x 7.5mg or 3 x 10mg or for some 2 x 15mg subcutaneous MeCbl injections. Metafolin in some way enhances retention of AdoCbl and MeCbl with excretion visibly decreased. A sublingual dose of 1-2 tablets each hour added for 12 hours appears to generate substantial CNS penetration as well.

    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils

    Elevated CSF Hcy
    Low CSF cobalamin
    limbs feel stiff
    Drowsy

    CNS penetrating dose MeCbl – AdoCbl

    dimmed vision – usually not noticed going into it because change can be very slow or present for life
    Clumsiness

    CNS penetrating dose MeCbl – AdoCbl – Metafolin

    Slow to adapt to night vision

    CNS penetrating dose MeCbl – AdoCbl – Metafolin – LCF

    Difficulty in word finding

    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils

    Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
    demyelinated areas on nerves
    subacute combined degeneration

    axonal degeneration of spinal cord
    unsteadiness of gait
    ataxic gait, particularly in dark
    positive Romberg
    positive Lhermittes
    Loss of motor control over some or all of toes
    Loss of motor control over part or all of feet
    Loss of sense of joint position
    sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
    sudden “ice pick” pain
    decreased reflexes
    brisk reflexes
    Foot Drop
    tripping over toes
    injuring toes catching top of toes on floor
    general feeling of weakness

  133. Freddd says

    Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13 Version 1.1
    Others mentioned similar patterns and variations.
    13. Initially – Mecbl
    14. +5 months 400mcg SAM-E
    15. + 4 months AdoCbl
    16. + 3 months titrate +50mg zinc
    17. +4 years 400mcg Metafolin
    18. +1 year LCF
    19. + 1 month TMG 1000mg/day
    20. 30mg MeCbl injections (3 or 4) daily,
    21. +0 Reduce SAM-e to 200mcg
    22. + 4 years remove TMG
    23. +6 months increase SAM-E to 800mcg
    24. Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far.

    These symptoms are what responded very well to L-carnitine fumarate AND AdoCbl for the first two items

    L-carnitine fumarate – AdoCbl – Metafolin – MeCbl

    weight loss involuntary
    muscular atrophy
    exercise does not build muscle

    L-carnitine fumarate – Metafolin – AdoCbl – MeCbl

    weight gain, watery fat
    edema

    L-carnitine fumarate – AdoCbl – MeCbl – Metafolin

    mild to extremely severe fatigue
    continuous extremely severe fatigue
    easy fatigability
    severe abnormal muscle fatigue up to and including apparent paralysis leading to death
    weakness
    muscle pain especially around attachment points to bones
    Eighteen severely tender muscle spots of FMS

    AdoCbl – L-carnitine fumarate

    exercise debilitates for up to a week, making things much worse
    accumulating muscle pains following exertion
    sore muscles throughout body
    lack of muscle recovery after exercise
    High urinary MMA

    AdoCbl – L-carnitine fumarate – Metafolin

    congestive heart failure
    Elevated CSF MMA
    Elevated uMMA

  134. Freddd says

    Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/05/13, Version 1.1
    Others mentioned similar patterns and variations.
    1. Initially – Mecbl
    2. +5 months 400mcg SAM-E
    3. + 4 months AdoCbl
    4. + 3 months titrate +50mg zinc
    5. +4 years 400mcg Metafolin
    6. +1 year LCF
    7. + 1 month TMG 1000mg/day
    8. 30mg MeCbl injections (3 or 4) daily,
    9. +0 Reduce SAM-e to 200mcg
    10. + 4 years remove TMG
    11. +6 months increase SAM-E to 800mcg
    12 Next 1 year titrating Metafolin and finding all the reasons I get folate insufficiency, early partial methylation block by effect. This whole process has taken 10 years so far

    These symptoms responded relatively partially first to 5 star MeCbl and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.

    splits/sores at corners of mouth -angular cheilitis
    impaired white blood cell response
    poor resistance to infections
    easy bruising
    pronounced anemia
    macrocytic anemia
    megablastic anemia
    pernicious anemia
    decreased blood clotting
    MCV > 93 first warning,
    MCV > 97 alert
    MCV > 100 outright macrocytosis
    MCV > 105 urgently needs treatment, severe problem

    Plus Vitamin E
    Child with neural tube defects
    mother of child with neural tube defect
    These symptoms responded not at all first to 5 star and then very strongly to Metafolin with basics. Many started improving in hours. Some took 7 years to correct.

    lack of dreaming
    MCV > 100 outright macrocytosis
    macrocytic anemia
    metallic taste
    Widespread body & muscle pain responding to NSAID
    Joint pain responding to NSAIDS
    splits/sores at corners of mouth -angular cheilitis

  135. Freddd says

    this post this is a list of symptoms that are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations of nutrients.
    These symptoms responded almost entirely or entirely to 5 star MeCbl – Methylcobalamin – Methylb12 – Mb12 – Mecobl with basics. Many started improving in hours. Others took 9 months to correct.

    5 star MeCbl – Methylcobalamin – Methylb12 – Mb12 – Mecobl with basics

    morning joint stiffness and pain
    paleness
    rapid heart rate
    standing with eyes closed, lose balance
    hands feel gloved with loss of sensitivity – glove anesthesia
    feet feel socked by loss of sensitivity – stocking anesthesia
    glove and stocking anesthesia
    neuropathic bladder
    unable to release bladder, mild to severe
    unable to fully empty the bladder
    fecal incontinence – occasionally to frequently
    diminished hearing – gradual onset or present for life, sudden return possible
    tinnitus – ringing in ears
    always feeling cold
    intolerance to loud sounds
    intolerance to multiple sounds
    sleep disorders
    non restorative sleep
    Night terrors
    Prolonged hypnagogic or hypnopompic states transitioning to/from sleep
    Sleep paralysis
    alteration of touch all over body, normal touch can be unpleasant and painful
    alterations and loss of taste
    taste hallucinations
    smell hallucinations
    sound hallucinations
    visual hallucinations
    alterations and loss of smell
    loss of smell and taste of strawberries specifically
    loss or alteration of smell and taste of potato chips specifically
    roughening and increased raspiness of voice, mb12 can smooth in mid word
    blurring of vision – can be sudden onset and sudden return
    Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
    optic atrophy
    centrocecal scotomata
    hypersensitivity/intolerance to bright light
    intolerance to loud sounds
    intolerance to multiple sounds
    burning muscle pain
    burning muscle pain
    diminished hearing – gradual onset or present for life, sudden return possible
    tinnitus – ringing in ears
    sore burning tongue

  136. Jacquie says

    I was diagnosed with b12 deff over a year ago, had weekly jabs for 10 weeks then 2 monthly since, but all my symptoms remained and infact started to get worse. GP sent me to rheumatologist and neurologist and now been diagnosed with fibromyalgia, as they state my symptoms of pain in all parts of body, diahorea, memory loss, the fogs, pins and needles and numbness to name but a few symptoms, are not due to b12. Now on anti depressants as that’s wat they give for fibro and codydramol which after just over a week no change at all. I’m now finding it difficult to walk but GP just fobs all this off. Tried to get dla or incapacity benefit as cant work and been refused as GP makes less of it. I am in so much pain day and night, can’t do my bra up myself due to the bad pain if I try, I do try to keep moving but every step beyond approx 6 to 8 steps is agony.

    • Freddd says

      Hi Jacquie,

      FMS is caused by various combinarions of deficiencies of body and CNS (brain/cord) of mostly MeCbl, AdoCbl, L-methylfolate and L-carnitine fumarate. I used to have fibro and all the stuff that goes with it. I’m cured and have been for some years now. I figured out how. The tests don’t begin to to tell the stories. Stop the nerve damage before it gets worse. I came close to a wheelchair and are now maybe 6 months away and holding becasue of nerve damage.

  137. Mark says

    Hi Chris and Fredd,

    Kudos to you both for providing so much vital information and care for so many around the world.
    Am writing to you from Hong Kong.

    For years I have been telling Doctors of my many many symptoms to no avail- including Dizziness/ Weakness/ Joint pains/ Sore mouth and Tongue/ LOC/ Frequent Bowel disorders/ smelly farting/ Disturbed sleep/ excess sweating/ skin rashes & warts/ Hair loss/ Boils on knees and legs/ Shaky fingers and hands etc…+ “Hyper-pigmentation” all over my body for last 15 years & have severe Psoriasis since the last 20 years- resulting in a very dark, itchy & easily-bleeding skin rash condition around the entire Groin and anal region.

    In fact I had been taking supplements for several years- including Life Extension B Complex + Vit D3 1000IU + Nature Life’s Vit C but still my condition worsened severely! Then finally they discovered my B12 deficiency just by luck- which came in at 141Ng/L. Further my Vitamin D-25 Hydoxy Test came in low at 13 Ng/ml (or 33 nmol) so relatively deficient too!

    Blood Intrinsic Factor and Hemoglobin levels all tested fine- hence not presumed to be suffering from Pernicious Anemia (yet!) or Auto-immune Disease. Folate/ RBC Folate/ TSH Thyroid/ Creatinine/ Platelet/ INR/ Cortisol levels all were fine!
    Further the Biopsies from a thorough Endoscopy were all fine too + Brain scan showed no neurological damage to date. Waiting to do a Hydrogen Breath test + Colonoscopy + the Capsule Exam to rule out Crohns Disease/ Celiac Disease + maybe a Bone Marrow Biopsy! Not sure if I need to do a Urinary MMA test or a MTHFS test (to determine if body can metabolize Folic acid).

    Moreover its interesting to note that my sister was diagnosed 6 months prior with the same issues- ie low B12 of 170 and low D of 13- but for decades she has suffered from Iron deficiency Anemia caused by Menstrual blood loss. Docs feel there could be a correlation to my case as Celiac tends to run in the family. I did actually try a Gluten free diet awhile back for 4-5 months which didn’t help but Docs feel it probably needs to be stricter.

    To boost my level at once- I ordered Methyl-cobalamin Injections (500mcg weekly) just to start with and plan to use Sublingual tablets thereafter. However the main issue that remains is WHY the B12 + D are deficient…ie What is the Cause resulting in these Symptoms?
    Pls note I eat a very healthy and balanced diet with meats, dairy, fish, vegetables, fruits and exercise very regularly.
    So Doctors here are very hesitant to treat the Symptoms before ascertaining the true Cause.

    Nevertheless I have ordered some Supplements from your recommended list and based on people’s past experiences shared over the net- it seems the best Brands to currently use are:

    -Enzymatic Therapy 1mg B12 Infusion Daily (How do you chop the tabs to one tenth or a quarter?)
    -Solgar Methyl-Folate 400mcg Daily (to be taken sublingual or just swallowed?)
    -Adenosyl B12 Source Natural’s Dibencozide 10mg Weekly
    (I realize that Anabol Dibencoplex is the preferred choice now so will switch to it once my supply of above runs out)
    +
    -Enzymatic Therapy 2000IU Vitamin D3 sublingual chewable tables
    -Mens Optimized Multi-Vitamin Vitacost (sadly discovered it contains Folic Acid but only 200mcg/tab)
    -Vital Nutrients Pure Fish Oil
    +
    Plan to eat 2 Bananas daily to boost Potassium levels

    So wanted to ask your expert opinions on whether the above seems like a reasonable method of treating my current conditions (or if you have any other Brand or Supplement recommendations ) and further if you can advise me the best times of day to take the above- given that the sublingual tablets need much time to dissolve.

    Much much appreciated!

    Mark
    ps. Sorry for the extensive mail!

    • Greg says

      Hi Mark,
      It is good that you have recognized your deficiency. A couple of comments, depending upon your conditions you will need both adenosyl and methyl cobalamin. Our calculations indicate that if you are truly deficient, and certainly being below 200 pmol/L we would regard as extremely low as data suggests that being less than 300 pmol/L should be regarded as low. So you and your sister definitely is very low.
      Next thing to overcome the deficiency, the amount of VB12 you absorb orally is less than 1% of the dose if you use the high dose supplements, as uptake is entirely non-specific. Now the VB12 that is absorbed has to get onto transcobalamin II, which is the transporter for vitamin B12 around the body, which controls vitamin B12 uptake into the cells. IF you get vitamin B12 across the gut non-specifically, the majority of this does not get onto this transporter and so you pee it out and it is wasted. So whilst it may appear in the serum it is NOT on the transporter. We have also calculated that even if you had an intact Intrinsic Factor mediated uptake, it would take 20,000 days to overcome deficiency and get back to normal, which clearly is not going to happen, particularly as you loose 1 ug VB12 per day.
      It is for this reason that we developed a transdermal system for vitamin B12. Using this technology the vitamin B12 is slowly released into the blood thereby allowing much more time to get onto the transporter (transcobalamin II).

      Next the vitamin D3 deficiency, recent data in the literature suggests that oral supplements for this are not very effective, and it would be much better to have topical vitamin D3. FYI many of the conditions associated with vitamin B12 deficiency are also associated with vitamin D3 deficiency, which brings me to your psoriasis.
      We currently have a topical curcuminoid preparation that should be beneficial for psoriasis. It is in a non-sticky oil, which should give relief on its own, but you would need both vitamin B12 and vitamin D3 to really try to deal with it. (Look up the anti-inflammatory activity of curcumnoids).
      You can contact me off line if you want to know more about potential products for this grj@mentorconsulting.net . Good luck with it all

      • Mark says

        Hi Greg,
        Really appreciate yr detailed reply.
        For now have started treatment with the oral supplements & will see how that goes.
        Will keep u posted.
        Thanks n best,
        Mark

    • Freddd says

      Hi Mark,

      I take the Enzy 5 at a time, 6 times a day along with about 3.33mg of AdoCbl once a day. The root cause of so much of this appears to me to be pardoxical folate deficiency cased by either folic acid and/or flolinic acid/veggie folate. That can casue the entire set of symptoms then over decades. B12 goes deficienct ffor all sorts of reasons most never deternined. Once the folate and then b12 go low, then one has partial methylation block, methyltrap and parrtial ATP block bseparately in CNS and body.. They all feed back and forth on each other and symptoms can flip around paradoxically. So in treating them I think it works better to start with small doses of MeCbl AND AdoCbol plus 200mg of Metafolin. Then when you get to a certain pint perhaps 100mcfg of absorbed active b12s and healing starts. Perhapos 1/4 of an ENZY 1mg and a bit from the Anabol AdoCbl capsule under the lip for as long as possible. After healing turns on about the 3rd day more potassium perhaps 1200-3000mcg titrated a few hundred mg at a time. 4-6 doses a day for the total. Something similar had to be done with possible paradoxical folate deficiency symptoms, titrate Metafolin to effectiveness, also in multiple doses.

      • Mark says

        Hi Fredd,
        Many thanks for your help and reply.
        So I am on Day 3 & have been taking following:
        -Multi Vitamin 1 Tab
        -S.Folate 1/2 of 400Mcg
        -Ultra Pure Fish Oil 1 Tab
        -1/4 of B12 E.Therapy 1mg under lip
        -2000IU of D3 E.Therapy under lip
        + eating some Bananas throughout day for natural Potassium
        and will start some AdoCbl 1/4 from next week

        Do you feel there is anything else I should add or beware of?

        Lastly I have a real hard time chopping the tablets into smaller pieces- dont know how you guys get them into 1/4 sizes without crushing some of it into powder?

        Thanks for all!
        Mark

  138. mizzdiagnosed says

    FREDDD…ty for your fast response, I will be talking to a new Doc on Friday, I’m sure it is not MS…not to much pain unless my bones are chilled. Just pure muscle wasting. But years of being misdiagnosed I have to reach out to others and take my own health into my hands and get it fixed, I see my mum and where I will be if I don’t help my self on this. Thank you for all the info you have supplied me with I really appreciate it, and will read every word, this is a hell of alot more than any doc has done for me…..they say oh well see you in year, yea yea its gonna be ok, see you in 6 months….Im done with that garbage, I decide now, I have the power to change my life and my health, thank you so much for the start I so desperately needed.

  139. mizzdiagnosed says

    Family inherited and diagnosed with 6 or 7 different neuro muscular diseases ADULT ONSET. (CANADA)…finally told they don’t know what it is, so now I feel I have to figure out what a parent (in a wheelchair now) passed on to 3 children. Now I am wondering if we all can have a B12 deficiency? I have a new doctor and have an appointment Friday with him, in terms and words I can understand, what tests should I ask him for? I will be asking for an MRI, BUT I hope some blood tests will come back with a easy fix (wishing) any help here is greatly appreciated.

    • Freddd says

      If you are looking for an MRI, “weighting” should be set so as to see the appropriate areas etc for Subacute combined degneration demyelinations.. As SACD goes with a MeCbl, AdoCbl and l-methylfolate deficiencies in the body and CNS, MS has MeCbl and l-methylfolate deficiencies in the brain (Elevated cerebral spinal fluid Hcy) and Parkinson’s with AdoCbl and l-carnitine deficiencies in the CNS with elevated CSF MMA. I got to within a month of a wheel chair from SACD and managed to regress it to about 6-12 months from a wheelchair and holding. My maternal grandfather had MS and b12 deficiency, my halfsiblings have lots of symtpoms and I and all 3 of my children have have the same deficiencies. Now they are getting the right vitamins to prevent their getting these nueuromuscular diseases. The tests that they will do are not definitive. A trial with the right brands of vitamins done in the right way will tell you everything. Also, I have a list of hundreds of these symptoms grouped by nutritional deficiencies. I am busy getting those posted. I’ve put up several pages of them and am dping the rest. They are at this link spread across the last half a dozen pages. http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-17

  140. Jan says

    Hi

    With great concern and confusion, I read this blog. I am in every one of these comments and concerned with every persons experience. I am also unsure when it comes to reading any lay persons strong opinion and do not know whether to run and hide my head in the sand or begin eating all the foods and vitamins and sublinguals and shots and so forth and so on.

    Without a doubt, the US is WAY down in their normal numbers for the range that is acceptable for B12. I have been coming here, reading all and trying everything in the world forever and I cannot help it, I am a skeptic of a sort. I am using the subling methyl micro, 5000. I am not sure where anyone is getting injectible in the US now as I am told that the only factory in this country is down. So, I would love to know. But, all of the other stuff was checked and now I have developed a myopathy of some sort on my heart and had to have a defibrillator implanted and I am so over all of this. I have all these neurological problems and now this. It all fits together for what I read here but I need a damn doctor. I need someone who can guide me. I am too confused by all this. What kind would you go to??????

    • Freddd says

      Hi Jan,

      Where do you live? In the USA thatere are hundreds of independent compounding pharmacies mixing up MeCbl injections. New England Compounding Center wasn’t supposed to be a factory. It was supposed to be a compounding pharamcy. Unfortunately the only 5 star MeCbl I can suggest at the moment is Enzymatic Therapy 1mg. I take 30+ every day to keep my nervous system functioning. I don’t know how to find a doctor that treats this well. Good luck.

      • Jan says

        Hey

        I am in NC. By factories, I am referring to rx grade injectible. I bought my shots via rx and I am only comfortable using that grade for injectibles. I wish I knew where to get it, I will check on the place that you noted, thank you for the info…

        • Freddd says

          Jan, I was giving an example of a compounding pjharamacy turning into a factory and killing people witjh mold contaminated products. They are the BAD example. University Pharamcy in Salt Lake City utah, fills prescriptions for MeCbl injectable by prescriptions and as far as I know is a good example..

          • Jan says

            See, I did not catch that and I am so flipping intimidated by all the posts on here, I just go with the flow. Listen, here is what I have been told, and who the hell knows, ok? the only place that produced B12 for injection here in the US, as of last fall, was shut down due to some type of compromise or something and would eventually reopen. So, I had to go to sublingual. I have no idea if they are working, I have not had my blood drawn in a bit. But, I can say that the beta blocker given to me to keep me alive since the fatal ventricular tach. was found 2/12, has taken my quality of life to crap. The depression is horrible. My cognitive ability has been on a downtrend for so long, and this site overwhelms me more than I can ever tell any one of you. Read all the posts, are you kidding me? When this started for me in 2006 with the misdx of MS, and I was told there was a brain stem tumor, I was struggling with just being told those two things. Now, after the wrong meds being pushed into my flesh, and being told I did not have MS after two years, but rather CIDP, and being treated with IVIG so that I can feel my feet and hands, and now living feeling like a human tuning fork all over, having the cognitive abilities of a person who has been in a coma for a few years and is not awake, nothing makes sense, and I was a stock broker for my career, and worked in Two World Trade. I am not an idiot, or I did not used to be, I am undone. I can find no one. I need an dr. who can tie all my issues together, I need help. I would go on Dr. Phil in a NY minute to get to the PNP clinic in TX for a total overview. And I have super insurance. Just no confidence in any Dr. I have. A machine in my heart, and a team of drs. for my gastro, which is horrible, two hospt stays passing only blood, each stay dictating ten days. THey do not allow you in the hospt. anymore, so you know how sick I was. I was in the hosp in 2011 12 times. I have a monitor on my heart again, and a difibrillator implanted. If I were not afraid to die, I would end this misery. And I cannot read all this. I have been through so much, I did read, I had all the tests ran. I am negative, negative and againg for everything. I have no idea where to run, or to who.

            • jan says

              correction…I was told that I did not have MS after taking meds, betaseron, for four years and it is possibly why I have this heart issue. I have an electrical condition i nmy heart because a spot developed. No disease of the plumbing type. Just a stupid spot in the wrong place to ablate. He tried.

              • Kaytee says

                My last lot of injetible methyl came from Apothecure in Dallas. Don’t know if it’s still available. I’m due to get my next lot very shortly, so if it’s from the US and is a different lab I’ll post on here.
                I’ve also put the link to the new video about b12 deficiency from the US again in case you’ve not seen it.
                I’m truly sorry to hear all you’ve been through and know from experience how you will be struggling to clarify all the info being thrown at you.
                Here’s the link – if nothing else it will prove to you that you are not alone.

  141. Jane says

    Hi Jasmine,
    I read your question about folic acid. Folic acid plays a big part in the absorbtion of B12. I take B12 and since I’ve been taking folic acid with it it’s made my level stay stable.

  142. Marcus says

    DUH… stop buying pills and GET TESTED FOR CELIAC !
    Mal-absorption is caused by Celiac disease.
    Ask your doctor for the blood tests: tTG-IgA and DGP-IgG

    • Tara says

      Marcus, that’s a somewhat trite and simplistic thing to say to people who have been through the proverbial wringer. I HAVE been tested for celiac. I was negative. Regardless, I am not only gluten free, I am grain free, soy free and dairy free. I have been working for a solid year to heal my gut. But there is ALSO pernicious anemia, which is a lack of intrinsic factor which means that even giving up wheat forever will not fix my B12 issue. Not to mention that many people in this thread, myself included, likely have a genetic mutation or two called MTHFR- which affects the methylation of folate and B12 so while it is good to suggest things that people may not think of, prefacing it with DUH seems a tad bit offensive. Thanks.

    • Amber says

      I second Tara’s response….I was also tested for celiac (negative) but I have 2 copies of another gene which predisposes me to gluten allergy. And I had elevated antibodies for gluten, so obviously it’s a problem for me. Like Tara, I’ve also gone on a paleo type diet for quite some time and avoid grains, but it has not completely healed me. The B12 supplement I now take is the first time I’ve really seen my health begin to improve. It’s helping me sooo much! It’s easy for those who don’t need them to tell others to “stop buying pills”.

  143. Lisa says

    I just found out I am B12 deficient or am B12 anemic and just had first injection. I just had my first B12 injection today. Does anyone know if these shots are expensive and are you able to give injections to yourself at home so help w/ cost.

    I am a type 2 diabetic and take metformin twice daily and read people who take this are at greater risk for being B12 deficient.

    I’ve been experiencing extreme fatigue this past year. I used to workout daily and started to notice my body struggling to get through the work out. I’ve gone from having knee problems, to lower back problems, and now I’m having problems w/ my legs and feet. I would complain to the doctor but they never checked my B12. I’m extremely concerned because I’ve noticed such a big change in my body this past year and I’m only 43 and considered myself to be pretty healthy before.

    I am also being tested for MS since and am scheduled for an MRI on Monday. I notice the symptoms are very similiar. I’m wondering if they are linked at all.

    If anyone has any thoughts or advice that you think might be helpful I would really like to hear back from you. Thanks!

    • Freddd says

      Hi Lisa,

      A lack of both types of active b12, Metafolin and carnitine can casue all your symptoms. If you do the right brands of subclingual active b12s and so on injections are not needded. Thsoe are usually CyCbl or HyCbl and are expensive to be given them and don’t work as well as MeCbl and AdoCbl. These are typically 100 to 10,000 times more effective. I have injected MeCbl at various times. It isn’t as consitantly as good as the best sublinguals.

      • Jan says

        Actually, B12 is not expensive to give yourself shots, but I cannot buy them any longer. The only factory for them in the US, by RX, is not producing due to contamination, according to my pharmacy. So, it is not available. But, when I bought it, it was hella cheap. When you get checked for MS, be sure that they also check your reflexes to be sure that your neuropathy is not from your nerve sheaths instead of from your brain signals. Muscle response tests also. I was dx with MS and did not have it but gave myself shots for MS for four years and as a result, my heart was damaged. Now, I have a defibrillator implanted and I have CIDP, a totally different disease and I have a b12 def. that has to be treated. Chicken, Egg. Who knows. But, make sure you get All the tests you need before they throw you onto meds for MS. You need MS meds if you have it to stop it’s progression but if you do not have it, it can hurt you.

  144. Jasmine says

    Does anybody here ever experience or has felt your heartbeat in your knees?
    my knees pulsate all the time and it’s been going on for more than a month, at night time it’s so powerful it distracts me from my sleep. I do take magnesium, potassium and metafolin beside my Mb12 and Adb12 and bunch of other vitamins.

  145. Felicia says

    I have a couple questions:

    Has anyone had experiences with headaches after starting B12 (injections)?

    And what about testing B12 levels going forward? I had my MMA tested in 2011 and was diagnosed with pernicious anemia based on that and other information by a naturopath, but no B12 tests since (other blood work annually). Just curious what people are doing going forward with that part. Is there anyone else who specializes in this area that can work at a distance if needed?

    I have been doing one injection a week at home of methyl B12, which has really helped my energy levels, and was told I’d likely need to stay on them for life, but am curious now after reading all this.

    And Greg, thanks so much for all the helpful information!!

    • Amber says

      Hi Felicia,
      I get headaches (and a scratchy throat) if my folate is low. I take a methylfolate supplement along with the B12. I’ve been taking a sublingual B12 daily for a month now and it’s helping tremendously… it’s certainly boosting my levels. I hate getting shots.

      • Felicia says

        Amber,

        Thanks for the information — very helpful. I get the throat thing too, wasn’t sure what that is about. May I ask what supplement you like for methylfolate and what you use sublingually? And did you test your levels with any follow up testing at a later date? Thanks so much.

        • Amber says

          Felicia,
          I use Solgar Metafolin 800mcg, divided doses thru the day (and up the dosage as needed, per my symptoms), and Enzymatic Therapy B12 1000mcg (I hold this in my upper lip so it dissolves slowly). I’m careful to avoid folic acid which exacerbates my low folate symptoms. Maybe I’m unable to process folic acid into the active form, but apparently this is common.
          On this protocol, low potassium can be a problem, so I pay attention to any muscle cramps or malaise which low potassium can cause. It’s a lot to keep track of :) I’m becoming much more body aware these days! I have a 99 mg potassium supplement I take as needed (forget which brand, don’t think it matters).
          I just got my B12 level checked 2 days ago and am waiting for the results. I wish I’d been tested before starting B12, but the doc couldn’t get me in for a month, and I was really suffering, so didn’t want to wait.

          • Finndian says

            By the way… Fredd never mentions it but if you are potassium deficient then you are surely magnesium deficient. They go hand in hand. Muscle tension or problem are almost always solved by magnesium for me. Also, taking potassium if your indeed magnesium deficient will highlight magnesium deficiency symptoms and bring them to the forefront. I would look up magnesium deficiency symptoms and see if you are experiencing any.

            • Amber says

              Thanks Finndian,
              It helps me sleep well if I take Magnesium and zinc right before bed. If I forget, then after about 2 hours of tossing and turning while my husband snores away, I finally remember, and go take it! I get the restless legs symptom at times (very annoying sensation), so now I know it’s probably low magnesium. I’m hoping as my gut heals, I won’t need so many supplements. But for now, they help.

              • Finndian says

                Definitely helps restless legs issue for me too. My sure sign of magnesium deficiency is muscle pain and stiffness across my shoulders and up my neck. Oddly, enough I start grimacing a lot as well. Like getting out of my car or some other odd physical motion or ever remembering a forgotten appointment… I’ll screw up my face. Odd thing is that I’ve read a couple studies that say magnesium helps Tourette’s syndrome sufferers. Always wondered if my grimacing has anything to do with that.

                Once my gut condition improved my magnesium needs have plummeted. Good luck. Don’t forget L-glutamine, meticlear plus and high dose BCAA’s… thats the combination that finally cured what I assume was Leaky Gut syndrome.

                • Tara says

                  Finndian,
                  Could you speak more about what you did to heal your gut? I take L-glutamine. What is meticlear and BCAA’s? I am really struggling. I changed my diet, I am doing the methylation supplements but everyone says that is pointless until you fix your gut.

          • Felicia says

            Amber,
            Thanks for the info, and very interesting about the folate. I was taking a Thorne supplement with both B12 and folate in it (one bottle a couple months ago) per my naturopath and then a Pure Encapsulations methyl B12 and folate (800 mcg) after that but wasn’t tracking the headaches then so that would be interesting if the headaches are more related to that than too much B12 (because I was also doing 1-2x a week injections then).

            May I ask what test you did to test your levels? Serum B12, MMA and Hcy or something else? I’d love to hear the results if you don’t mind sharing, and I can give you my email if that’s easier.

            • Amber says

              In a perfect world, where doctors actually listen to patients, I would’ve done a B12 serum, urinary MMA, and homocysteine. With my doctor, he refused to test MMA and homocysteine, unless B12 results come back low. Which is a mistake, since B12 serum level can be high, but there can still be a functional deficiency (I don’t understand the mechanism behind this). He ordered some other lab tests, I think for thyroid.
              He was more interested in prescribing drugs than listening to me. I won’t go back to him…but it’s very hard finding a decent doctor in my area.
              When I get my results back, I’ll let you know what my level is!

                • Greg says

                  Hi Amber, It is actually very important that you get your MMA and Hcy levels tested. From my reading, one of the reasons that they don’t routinely test it is because the tests are very expensive. Another reason is that most doctors do not really know much about deficiency and how it affects Hcy and MMA and what the consequences are. If you only get your B12 levels tested be aware that the US lower limit of normal is for clinical deficiency, such as you would expect if you were anemic. This level is way too low. There are many papers that show that Hcy and MMA start to increase when your levels drop below 300 pmol/Lm or 406 pg/ml. Elevated MMA leads to gradual demylination of your neurones, whilst elevated Hcy leads to lots of cardiovascular events, so it is quite important that you keep them low all the time.

              • Felicia says

                Amber,

                Just following up to see if you have had any additional feedback about your lab tests and B12+ levels. I just tested my B12, MMA, Hcy and Folate levels and am waiting to see my practitioner to go over them. My B12 was >2000 and I have been doing injections (weekly until now, and twice weekly before that) for a couple of years, so we shall see. If I end up staying on B12 supplements I would sure like to use the sublingual ones going forward. I love the energy levels I’ve had since starting the injections but to be honest, I really do not like them. So we shall see, and I’ve love to hear more about your results if you feel like sharing.

                • Amber says

                  Hi Felicia, I just picked up my results a couple days ago. I was quite surprised by them! The good news…for the first time ever my hematacrit (blood count), has gone up a little compared to what it was 4 months ago! This has never happened before…I’ve been anemic all my life, so I’m thrilled to finally see something helping with that. I knew I have less brain fog, and better days lately of being able to function, but it’s good to see it on paper.
                  The weird stuff now….I’m really regretting not insisting I have the Hcy and MMA tests done, coz it could’ve clarified things: My B12 is 708 pg/ml, and my folic acid level is >24 ng/ml which is “Excessive”. To me, this really points to a problem with my processing folic acid into its active form, so it accumulates in the blood, unused. And not enough active folate, of course means the B12, which is used in the same metabolic pathway, is also not being utilized, hence my B12 deficiency symptoms. That’s my theory anyway….I’ve sent out a 23andMe test and am awaiting the results to see if I have the MTHFR gene defect (I strongly suspect I do). In the meantime I’m continuing Freddds protocol, but I tend to still get headaches very easily if I don’t take enough methylfolate…I might need a much higher dosage than what I’m currently taking. I’m looking around for a higher dose methylfolate, so far I found one but it’s very expensive.
                  Do share your own results if you don’t mind, I’d be very interested.

        • Finndian says

          I don’t know what it is with the B12 and the throat. When I was at my worst I actually got a paralyzed vocal cord and couldn’t speak for 3 months. Injecting B12 every week brought the cord back to life but it was scary. Now I know I need extra B12 when I get hoarse for no apparent reason because I know that the feeling is of the vocal cords getting weak and the irritation is them not vibrating properly.

          • Felicia says

            Amber,

            I didn’t see a reply button under your post so am replying to one down, hope it works.
            Great to hear you got your results and are finding some improvements. Was your hematocrit really low? If you feel like sharing that level that might be helpful too. And hopefully you’ll get some responses about your other concerns — I’m not familiar enough with this issue to be able to respond, but it really helps to hear your story. Did you say you are also working with a practitioner?
            My levels were B12 >2000 pg/mL (and I unfortunately never tested it before this)
            Folate 17.4 ng/mL (first time I tested)
            Hcy 5.53 umol/L (first time I tested)
            MMA (serum) .14 nmol/mL (I only did serum because that’s what I did once before)
            and my HCT was 41.7
            I was diagnosed with pernicious anemia (by a naturopath) two years ago based on blood work and symptoms and that’s why I started the injections (weekly up to now), but now I am revisiting it all to see what will be the best path forward. I also have an autoimmune condition (psoriasis) and have been off gluten for 10 years and most dairy for about a year. So it’s been really helpful to hear what people are doing and Chris’ responses, since I had no idea this affected so many people.

            • Felicia says

              Btw Amber, my practitioner responded today already about the test results and said the high levels of serum B12 were not a concern but the low level of MMA is, perhaps a sign that the pernicious anemia is acting up, so I will see her this week. So glad I got these tests done so I can follow up for now, so I will be staying on weekly injections for now until I learn more.

    • Freddd says

      A headache after stating b12, and orthwer symtoms too, two entire groups of symptoms can often appear. They are hoifger up on this page. They usually are low potassium wich can be dangerous. People start helaing and and on the 3 or after day potassium can go low as cells get made. Somewhere between 1200 and 3000mg of additional potassium can be helpful. The other set of symptoms are often folate insufficiency. Often people get so much healing started that other deficiencies are induced and folat l-methyfolate deficiency often is the one.

      • Felicia says

        Freddd,
        So can you use serum potassium levels as a guide in this process? Just curious. I know my levels have been borderline before, and I drink mineral water with potassium in it, which seems to help overall too.

    • Lisa says

      HI Felicia,

      I just had my first B12 injection and I’ve been getting headaches ever since. I’m assuming it’s from the injection. Right now I am getting monthly and they will do a follow up blood test in 3 months. How were you able to get the at home injection. I inquired about that today and they told me that you would have to have a nurse come into the home to administer. My concern going forward is the expense of the injection. I would definitely call your doctor and have them do follow up bloodwork on your B12 to see if your count has gone up or down.

      • Tara says

        My husband does my injections. My doc wanted me to have it done in the office for a while and then she wrote me an Rx for the B12 and another for the needles.

      • Felicia says

        Lisa,
        Thanks for the information, and sorry to hear about the headaches — hope that gets better. I am able to do home injections because my naturopath (in Colorado) gets the B12 through a compounding pharmacy and I buy it from her, and then she taught me how to do them myself in my thigh (she gave me the first two injections). Was challenging at first and now very simple. They sell the syringes or you can get them online. And the B12 (methyl) is $30 a vial and lasts me a long time — more than a month for sure (and I do injections once a week). And thanks for the suggestion about follow up testing — good to know that’s confirmed by many people here.

        • Freddd says

          Hi Felicia,

          I and many others find a subcutaneous injection somewhat lager than the IM as it is a time release that way, is more effective. Also much less of an ordeal. I just have a problem doing an IM to myself. Using a 5/16″ inch 31 gauge needle is a breeze. Also, I wrap the vial in foil, except for the seal, and never expose it to light. I also wrap the syring in foil before drawing. I have perfomed a series of trials and found out that a total of ten minutes exposure in a vial or 1 minute in a syring is enough to make a qualitative difference of not working on neurological issues at all since the light breaks down MeCbl to HyCbl and AquoCbl, very quickly. Some people react with acne to that. Good luck and Good health

          • Felicia says

            Freddd,
            Thanks for the info. I didn’t know about the vials and light, but did notice they come in dark glass containers so that makes sense. My next step is to get tested and then see if I’m taking the right amount of B12 weekly — since they told me it’s for life it makes sense to do a follow up test (since I only had the MMA tested and never B12 serum or homostyceine) — waiting to hear back from my practitioner and will go from there. Amazing what a difference it has made in my energy levels too.

  146. Freddd says

    Hi Kristina,

    If you a good methylcobalamin 1,000mcg, Enzymatic Therapy B12 infusion is the best I know of, and take 1 every day for 45-120 minutes under your upper lip, you will do far better than injections of HyCbl every now and then, even better than daily injections. It is just more effecftive. Taking a methylfolate brand can help you retain more of the b12. For instance, Metafolin by any brand is the same and the are other brands of l-mehtylfolate. Then there is AdoCbl, the other half of the active b12 duo.

  147. Kristina says

    Hi,
    I have just been diagnosed with B12 deficiency today and have to have (hydroxocobalamin) injections once a week for three weeks then once a month for three months. I take Metformin which I read can be a cause of low B12, if this is true and I continue my Metformin will my B12 levels ever become normal?

    • Greg says

      Hi Kristina,
      One of the most common side-effects of taking Metformin for your diabetes is that it mucks up your VB12 metabolism. For some reason doctors diagnosing the Metformin often do not tell their patients that they are likely to become VB12 deficient.
      Now there are two active forms of the VB12 vitamin in the body, one is adenosylcobalamin, which is involved in energy production from some amino acids and some fats. The other is methylcobalamin, which is involved in DNA synthesis as well as red blood cells. Unfortunately by the time you have become anemic, you can have other much more serious complications of VB12 deficiency, which you will notice in the various discussions on the blog.
      Firstly, the Adenosylcobalamin deficiency will cause you to feel tired and you will muscle fatigue early. More importantly a by-product of the adenosylcobalamin deficiency is an accumulation of another molecule called MMA. Now this is really bad because it can upset the myelin sheaf on your nerves, and can cause a whole lot of nerve damage related symptoms.
      The adenosycobalamin deficiency can cause an increase in homocyeteine levels, which has been associated with an increased risk of cardiovascular disease.
      It is important that if you are getting VB12 injections that you get your levels of MMA and Hcy checked. Only when these levels return to “normal” are you getting enough VB12.
      As long as you are taking metformin, and assorted other drugs for your diabetes, you will need the VB12 shots.
      If you exercise enough and control your sugar intake you MAY be able to go off metformin if you can get your blood sugar levels down far enough. A lot of work, for some people, BUT if you look at all the nasty side effects of diabetes as far as dementia, peripheral neuropathy, and macular degeneration in the eye, you may think it is worth it. My mother decided not to listen and she now has late stage dementia, can barely see, has lost most of her teeth which rotted out, and spends most of her life sitting in a chair not knowing where she is, or what is going on. If it was me….
      I can help you with alternatives to injectable VB12, but I cannot do the hard yards for you. Best of luck.

  148. Freddd says

    Hi Lan, Common symptoms of b12/folate deficiency could be some collection of common non-specific symptoms. Fatigue and tiredness, depression, lots of mysterious aches and pains, excema, dandruff, MCS, allergies, asthma, IBS, sore mouth, sore tongue, canker sores, sores at the corners of mouth, muscle pain. I’ve run across the “moons” on fingernails site. The woman writing it had very serious b12/folate deficiencies. She is sincere. I just don’t know. Those might be the only b12 deficiency symptoms I never had. Out of 400 or so possible symptoms most people never have more than 1/3 to 1/2 of them. Just starting out there is always a first handful of symtpoms. One of the things that distinguishes b12 deficiencies is the dozens of symptoms the doctors are all willing to ignore and tell you they mean nothing. There are at least 5 subdeficiencies involved and what symptoms a person has depends upon which combination of subdeficiencies they have. The very best way to tell is to the supplements. The one thing I am reasonably sure of is that people without deficiency symptoms have no responses. If one puts an Enzymatic Therapy B12 infusion (MeCbl) under a lip for 1-2 hours, 75% of those with a deficiency will have a response before the two hours. If one use a combination of 1 Enzy, and an Anbol Dibencoplex (AdoCbl) capsule emptied between lower lip and gum and at same time as MeCbl under upper lip and retains it the same 2 hours, 85% of thosw with deficiency will likely respond. If an L-methylfolate 800mcg is swallowed 30 minutes before the other two items, approaximately 90% with deficiency will have a response within 2 hours. If a 125mg or larger l-carnitine fumarate is taken on empty stomach with the Metafolin (L-methylfolate) only if a person doesn’t have anxiety,, the repsonse rate for deficiency goes up to 95%. Skin problems, behavoral and emotional and neurological symptoms, sleep disorders, all show up before fatigue which shows up only after a severe worsening of symtpoms. Fatigue is a late arrival. Longitudinal ridges in the nails can be casued by methylation and cell reproduction turning on and off and can happen with stree and illness that put a big demand on the body. My partner developed deep ridges in her big toe toenails from a 2 week international trip that exhausted her and nearly fainted during a performance.

    • karen says

      Hi Fredd, i have found ur articles on B12 very informing and helpful i have 3 monthly injections of B12 I do not know my levels as i have never asked, i was recently put on Folic acid tablet, which i have always thought were given to woman trying to conceive or pregnant, i also take vitamin D with calcuim. I still feel very tired to the point where i cud go back to bed after only getting up from bed although i never stay asleep all night . I feel at the moment i am in pain all the time my legs and back and sometimes i cant even dry my hair properly and my arm hurt holding the hairdryer . I also suffer with dizzy spel.s I also have IBS which ive had for years i am due to go back to my doctor I have two sons one has diagnoised autism he is 20 the other one has adhd can u please give me any suggestions that i cud give to my doctor as i feel im just not feeling any better

  149. Lan says

    So what are the common signs of B12 deficiency?

    I’m NOT in any of the high-risk groups listed in the article. I don’t consume alcohol other than the occasional sip of wine or beer. I’ve never had surgery. I’ve never been a vegetarian or vegan.

    At 30, I’m generally healthy and haven’t got sick for a few years, even though our family has moved from one country to the next with a young child. I stay at home and work hard from morning to midnight taking care of my child, homeschooling her, making homemade food (we eat pretty much the WAPF way), reading up on various health and education topics, and working on an online certificate medicine-related program. What I mean is that I’m in general good health and don’t lack energy an my mind works pretty well. I also don’t have chronic depression.

    The only thing that makes me suspect I may be deficient in B12 is my *slightly* ridged fingernails and the fact that only 5 out of my 10 fingers have “moons” on them. I came across a whole website when someone with experience in B12 deficiency said that those are signs. He also said that blood tests are sometimes inaccurate.

    So what should I do? I suspect that if I were indeed B12 deficient, it is something genetic, since my mom, dad and younger brother don’t have those moons on all of their fingers as well. My mom and dad’s fingernails are also a bit ridged. My husband, in contrast, has perfect moons on all of his fingers. My 3YO daughter is like me, and that worries me, but her naturopath told me one of the first signs of B12 deficiency would be lack of energy, and that’s NO WAY true in her case.

    Any thoughts or advice would be very much appreciated!

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