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  • My experience with B12 deficiency

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    Old 09-29-2013, 06:38 PM   #1
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    My experience with B12 deficiency

    In the 1990's I started having tingling sensations in my extremeties and other symptoms which contributed to severe anxiety. At the time, my vitamin B12 level was tested and being a little above the low end of the reference range, so it wasn't taken into consideration, and I was diagnosed with a psychiatric condition. However, being a vegetarian I was aware of the need for vitamin B12 and I read about how "low-normal" levels of vitamin B12 can produce symptoms of vitamin B12 deficiency in some people and was eventually able to convince by doctor to give me a (one time) B12 injection. When I had my worst symptoms, I happened to be taking folic acid supplements (which just started to become in vogue being advertised for general health reasons as well as women wanting to become pregnant), which can mask or worsen the effects of vitamin B12 deficiency. I didn't have a clear anemia or other signs such as increased MCV in the blood count which used to part of the "classic" picture of vitamin B12 deficiency; this was probably because of the masking effect of folic acid.

    Later, although I continued to have some symptoms, I wasn't really considering possible diet issues anymore and started with an anti-acid medication (proton-pump inhibitor) for other health reasons. After several years, some of my symptoms started to get a little worse (although not as bad as in the 1990's) and eventually I got tested for B12 which came back extremely low (probably contributed to by the proton-pump inhibitor medication). Note that at the time I wasn't getting any extra folic acid, and because I live in Europe there's no fortification of grains with folic acid. I opted to take 1000 microgram B12 tablets (1/day) to get my B12 levels up (to above the high end of the range) which worked fine (although injections are generally recommended for people with neurological symptoms).

    I still have symptoms such as tingling, numbness and some pains in the extremeties that are probably permanent damage due to B12 deficiency that I had the past (neurological damage due to B12 deficiency can be reversed when caught in time but can become permanent when treatment is delayed). But reading about some other people who had B12 deficiency and weren't diagnosed in time, it seems I am relatively lucky.

    Putting it all together, I've seen more or more reports about people being diagnosed with B12 deficiency when it's already too late (with severe permanent damage), especially in the US, being misdiagnosed with conditions such as anxiety/depression, diabetic neuropathy, MS, Alzheimer's (in the elderly), etc. A book has been written about this.

    A contributing factor seems to be the fact that people in the US are now loaded with folic acid (not only from the grain fortification, but additionally from fortified cereals and increased amounts of folic acid in multivitamins), which makes diagnosis more difficult because it prevents the anemia that used to be seen in the "textbook" vitamin B12 deficiency. As a result, presenting symptoms of vitamin B12 deficiency are now neurological symptoms that can be extremely hard to diagnose. Moreover, the B12 level can be "normal" (above the low end of the reference range) even as severe symptoms develop, which is even harder to diagnose.

    It seems prudent that vitamin B12 deficiency should be considered in anyone presenting with neurological symptoms that are compatible with it (which is a wide range of symptoms), and a "low normal" result from a vitamin B12 test does not exclude the possibility of vitamin B12 deficiency. It seems more physicians are now aware of this, but this may still be a minority and the diagnosis may still be missed in too many. This is unfortunate because the condition is preventable and treatment is relatively cheap.

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    Old 10-18-2013, 02:24 AM   #2
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    Re: My experience with B12 deficiency

    I was diagnosed with B-12 deficiency 22 years ago and continue to give myself shots. I suffered permanent damage in my feet and my hands so cannot do crafts like I use to. what interested me was that countries like England and Japan feel the low levels should not be below 500 which the US feels that our levels can go down to 125 or something like that. it is estimated that many folks in nursing homes and even mental hospitals may have low levels of B12 one would think that it is not expensive and sure worth doing tests more often.

    Old 10-18-2013, 04:31 AM   #3
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    Re: My experience with B12 deficiency

    I fully agree...and even in Europe the reference range used in practice is still the low one most of the time despite the studies that suggest it should be much higher.

    Part of the reason B12 deficiency is not a popular diagnosis with many physicians (especially in the US) is the influence of the pharmaceutical industry -- physicians are bombarded with promotion and incentives for expensive medicines that treat symptoms such as neuropathy, and may even directly profit from prescribing such medicines. At the same time there is very little promotion of proper diagnostic strategies for B12 deficiency. In that kind of context some physicians may simply not bother to look for a cause like vitamin B12 deficiency that doesnīt generate revenue when treated. Itīs even worse in psychiatry with its focus on medication.

    Iīve read a book about the B12 deficiency epidemic that is quite alarming and illustrates its very wide-ranged impact -- and ironically this book is marketed more or less in the alternative medicine niche despite being basically scientifically sound (unlike most other books in that genre) and based on extensive first-hand medical experience in a regular setting in the US.

    I certainly hope awareness in the medical community will increase, as it is still severely lacking.

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    b12 deficiency, folic acid, neuropathy

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