We have been writing of this since at least 2000. The form of B12 is very important for a percentage of people.

rose

Hi everyone

I was recently diagnosed with Vitamin B12 deficiency and folic acid deficiency. My symptoms began with palpitations and extra heartbeats three years ago. Twenty months ago I began to get fatigue, vertigo and imbalance, and was diagnosed with BPPV. In between these times I had a blood test that showed my B12 level was 253 but nothing was done (normal considered to be as low as 160!). I was living in the UK then. After worse fatigue and all the symptoms Cara? describes on the Gluten File plus a few more, my level was 140 and my folic acid 4. My doctor (now in the Netherlands) refered me to a neuro who was (sorry about this) a patronising prat who also told me laughingly that he could assure me that palpitations were NOT a symptom of B12 deficiency! He did however send me for an MRI and told me I had an "inner ear problem" and not MS (I didn't think I had it in the first place). I had been virtually bedridden on several occasions and at times was hardly able to walk. I saw him on a "good" day. My GP started me on B12 injections and folic acid tablets. The injections were to be one every three weeks for the first three injections (which I was surprised about) and then possibly every three months. He would investigate why my levels were low when the result of the MRI came through in mid-December. I booked my injections every two weeks by accident but decided to leave it as it was. I've had two injections and although my numbness had improved I still have all the other symptoms the worst being fatigue, imbalance, stabbing pains and bigger sharp pains here and there especially on my shins, pain behind my eyes and in my ears, sciatica, cubital tunnel syndrome, bladder and bowel problems, two types of tinnitus in one ear, clicking and popping in the ears, and problems with sleep, and all the brain fog stuff (I'm 52). I use a cane when walking alone mainly for balance and odd joint pains. Sometimes I find it hard to believe all my symptoms can be caused by this deficiency but read forums like this to reassure myself. I can't very well demand extra injections off my GP who seems to think I'm just a bit low. However, he was concerned that I may have permanent nerve damage or MS, so I don't quite get it. I'll ask next time I speak to him why only three injections to start, (but I am nervous about asking). It's good to know what others have been prescribed for comparison. At least after reading other posts I don't feel such a hyperchondriac as at times I have doubted myself as I couldn't believe I could have so many symptoms, luckily I have a supportive hubby.

all the best to everyone
Maria xx

Maria,


http://www.yourhealthbase.com/vitamin_B12.html
"oral supplementation with vitamin B12 is safe, efficient and inexpensive. Most multi-vitamin pills contain 100-200 microgram of the cyanocobalamin form of B-12. This must be converted to methylcobalamin or adenosylcobalamin before it can be used by the body. The actual absorption of B12 is also a problem with supplements. Swallowing 500 micrograms of cyanocobalamin can result in absorption of as little as 1.8 microgram so most multivitamins do not provide an adequate daily intake. The best approach is to dissolve a sublingual tablet of methylcobalamin (1000 micrograms) under the tongue every day. That will be sufficient to maintain adequate body stores. However, if a deficiency is actually present then 2000 microgram/day for one month is recommended followed by 1000 microgram/day. Some physicians still maintain that monthly injections of vitamin B12 is required to maintain adequate levels in the elderly and in patients with a diagnosed deficiency. There is however, no scientific evidence supporting the notion that injections are more effective than sublingual supplementation."

Vitamin B-12 - Is oral supplementation effective?
CAMBRIDGE, UNITED KINGDOM. It is common medical dogma that patients suffering from pernicious anaemia are unable to absorb sufficient vitamin B-12 from their diet and therefore require intramuscular injections of the vitamin on a regular basis. Recent research is questioning this assumption. In a commentary in The Lancet Dr. M. Elia of the Dunn Clinical Nutrition Centre persuasively outlines the reasons why oral supplementation is at least as effective as intramuscular injections. Dr. Elia points out that vitamin B-12 is absorbed from the intestine via two different routes. One involves intrinsic factor and is estimated to lead to absorption of about 60 per cent of the amount of vitamin B-12 ingested in the diet. The other does not need intrinsic factor (which is absent in pernicious anaemia patients) and only leads to absorption of about 1 per cent of the ingested amount. The body needs about 1-2.5 micrograms/day so oral supplementation with 100-200 micrograms/day should be adequate. However, Dr. Elia suggests a daily intake of 1000 micrograms/day is needed to ensure successful long-term results in patients with pernicious anaemia. A recent study showed that oral supplementation with 2000 micrograms/day was three times as effective as intramuscular injections in increasing vitamin B-12 levels in pernicious anaemia patients. Dr. Elia also questions whether the current RDA (Recommended Dietary Allowance) of 1-2.5 micrograms/day is adequate for older people. He points out that mild vitamin B-12 deficiency, which can lead to abnormalities in cognitive function and increased risk of cardiovascular disease, affects 12-15 per cent of all elderly people in the United States where the average daily vitamin B-12 intake is about six micrograms - well above the RDA.
Elia, M. Oral or parenteral therapy for B12 deficiency. The Lancet, Vol. 352, November 28, 1998, pp. 1721-22 (commentary)

Oral vitamin B12 and pernicious anaemia
MINNEAPOLIS, MINNESOTA. Pernicious anaemia can be treated with intramuscular injections of cobalamin (vitamin B12). These injections can be painful and expensive, but are still widely used despite the fact that research done 30 years ago clearly established that oral doses of one mg/day of vitamin B12 are effective in treating pernicious anaemia and other cobalamin deficiency disorders. The problem, according to Dr. Frank Lederle, MD of the Minneapolis Veterans Affairs Medical Center, is that physicians are unaware that oral cobalamin works. Dr. Lederle performed a survey among Minneapolis internists in 1989 and again in 1996. In 1989 none of the 245 respondents used oral cobalamin in the treatment of pernicious anaemia. In 1991 a review of the use of oral cobalamin was published in the Journal of the American Medical Association. A subsequent survey in 1996 showed that 19 per cent of the 223 internists responding were now using oral cobalamin. However, even in 1996, 71 per cent of the internists still held the incorrect view that sufficient quantities of cobalamin cannot be absorbed from oral supplements (91 per cent of the internists held this view in 1989). Dr. Lederle concludes that the majority of Minneapolis interns are still unaware of the oral treatment option.
Lederle, Frank A. Oral cobalamin for pernicious anemia: back from the verge of extinction. Journal of the American Geriatrics Society, Vol. 46, September 1998, pp. 1125-27

Oral administration of vitamin B-12 is effective
BRUSSELS, BELGIUM. Older people are often found to have a vitamin B-12 deficiency even though they do not suffer from pernicious anaemia. The body's ability to absorb vitamin B-12 from food decreases markedly with age probably because of a lack of stomach acid. The conventional way of correcting a vitamin B-12 deficiency has been through intramuscular injection of the vitamin. Now researchers at the Universities of Brussels and Antwerp report that oral administration of free vitamin B- 12 is effective in normalizing low vitamin B-12 levels. Their experiment involved 94 patients without pernicious anaemia with a mean age of 84 years who through repeated tests had been found to have an average vitamin B-12 level (in serum) of 146.5 ng/L. The patients were treated for one month with 100 micrograms/day of vitamin B-12 taken as an oral solution of the vitamin in water (10 ml of a solution containing 1 mg vitamin B-12 in 100 ml water). After 10 days 69 per cent of the patients had normal vitamin B-12 levels (271.5 ng/L average) and after 30 days 88 per cent had achieved normal levels (371.2 ng/L average). The researchers conclude that older patients with a vitamin B-12 deficiency unrelated to pernicious anaemia can be successfully treated with orally administered vitamin B-12.
Verhaeverbeke, I., et al. Normalization of low vitamin B-12 serum levels in older people by oral treatment. Journal of the American Geriatrics Society, Vol. 45, No. 1, January 1997, p. 124 (letter to the editor)

I have shots every 2 weeks as I have been advised that my condition would not be helped taking it oraly.
After 26 months a lot of my symptoms are controlled, but I am still suffering short term paralysis / paraparesis in my legs and now in my arms and hands.

I am seeing a new Neurolgist in February just to get a second opnion, if he also says I am suffering from Subacute Combined Degeneration of the Spinal Cord, then I will just get on with rest of my life and live with the paralysis that may or may not become permanent according to my MD.

Dorvad~ it would not hurt you to do BOTH. You might consider trying daily oral methylcobalamin for a few months, and see if you notice any benefit. Also, do you take a multivitamin and B-complex? You might also need B1, B6, folic acid, etc., as deficiencies in those can also cause neurologic symptoms.

Do you know if your shots are methylcobalamin or cyanocobalamin? It makes a difference for some people.

The vast majority of people seem to do really well on oral B12. I have only read from two people in six years who said that oral didn't work for them, and that they did better on the shots. I've heard several say that the oral worked better than the shots because they noticed symptoms/fatigue between monthly shots, and did not notice that when they had a steady daily supply.

And of course, there could be other things going on as well. For example, gluten sensitivity can cause wide ranging neurological symptoms, and many other conditions as well.


Maria~

I can't believe we shared so many of the same symptoms. It just always surprises me when symptoms can be so similiar, and other times very diverse. I was so lucky to catch my B12 deficiency just as I believe I was crossing over into spinal cord damage, given my symptoms. I had a few bed ridden days because of balance problems, numbness along my spine, etc, and even now...six years later, I have balance problems in the dark, going down stairs, running,...so I know I am not 100%.

And, as you may remember from reading my symptom list... my level was 294 (low NORMAL)...after 3-5 years of symptoms. So many people do slip through the cracks of these tests when doctors are only interpreting results based on the black and white of it, and the lab ranges are set the way the are.

And, again, there is always the possiblity that something else is also factoring into your symptoms. Seems that people with B12 deficiency often have other autoimmune disease, or vice versa. I know I was holding Lyme Disease in the back of my mind if my symptoms persisted or returned. But, thankfully, my symptoms have not returned...with the exception of a few mild flares now and then when my body is stressed..but very mild flares.

It is hard for people to believe these severe symptoms can all be related to a vitamin deficiency, but they can. I think these two articles available online are especially good on the subject~

eMedicine link on vitamin B12 associated neurological diseases:

Subacute combined degeneration: clinical, electrophysiological, and magnetic resonance imaging findings JNNP

I think you should also consider supplementing daily with oral methylcobalamin (2000mcg), even in addition to the shots. The supportive data can be found on here and Roses website (also linked here)~ http://jccglutenfree.googlepages.com/b12deficiency


Cara

I just came across this post In "My favourites". I thought I'd reply with an update. My MRI was normal and I was glad to get away from the prat of an neuro. After much of my own investigation I wondered if I could have coeliac even though no one in my large family had this. I explained my worsening bowel problems to my doctor and not only did he agree but wanted me tested for Lactose problems too. Both came up positive! I'm now gluten free but my B12 problems continue. After having three injections I finally improved. My vertigo improved, balance, and general energy. I was left with pain in my hands and arms, sciatica, hot flushes (but I am 52), twitching and cramps in the legs, tinnitus, great thirst, and sleep problems. But it was still great to be feeling better! Unfortunately they decided that as my B12 levels were now high to wait for more treatment for a few months. After three months all my problems came back and I've had them now for two months. My B12 level came out at 275 and the doctor gave me one injection to be followed up by an injection monthly for two more months then stop again. The first injection has done nothing. I'm being investigated for the thirst problems too, just in case I have diabetes insipidus as my glucose is fine. I've decided to confront the doctor full on and request more frequent B12 treatment. He is a doctor who listens so I hope he does this time. My husband says I play down my symptoms and joke about it too much. I do this because I have so many symptoms I don't want to come across as an hysteric. I've also made an appointment to see my gastro as he is also great just in case my GP doesn't agree with me. I would rather my B12 be maintained at a higher level as it seems more logical to me. I have read about coeliac people complaining of thirst problems so maybe this is related to that and nothing more. But I still want to make sure. I just want my life back even if it's "not as I know it".

I hope this helps someone else who hasn't figured out what their problems are. I'll report back with an update sooner this time.

Maria xxx

--are you taking any oral supplemental B12?

The responses to your first post provide much evidence that this would be as effective as B12 shots, as long as you are megadosing--at least 1000mcg (1 mg) doses taken seperately from other meds and supplements. This would be a better way to keep a constant high level of B12 in your body tissue.

Many of us use sublingual tablets that allow passive absorption, and these are avialable from numerous stores and Internet sites. Many of us have a preference for the methylcobalamin form of B12 (as opposed to the more commonly produced commercial cyanocobalamin), as that from has to jump through fewer metabolic hoops to be used by the body (and the B12 molecule is easy to interfere with, so the fewer hoops the better).

Thanks for that. I will certainly look into that if my GP doesn't agree with me and if I do it I will tell him. I think I'll have to get it from the internet as I'm sure it won't be available here in stores as I live in the Netherlands (I'm English). I think it is a good idea anyway to be honest. Today I was so exhausted and it's just like old times. I don't go out without a walking stick. People are very helpful telling me "but you look great"! I'm fortunate in looking much younger than I am. I need to look old, lined, with bags under my eyes and I think and I might get more sympathy! I recently went on a short trip to the Alps and more than one person asked me if they were right in saying that I was fine on holiday! As if all my symptoms went on holiday too! If one more person tells me it's stress Grrrr...

Maria xx

I hope you will take care of your B12 yourself. When a person is deficient, docs are not supposed to stop the treatment for a while. You need to have strong levels and maintain strong levels.

Chances are they didn't bother or know how to find out how good your stores were or how well you store the vitamin before they stopped it. Most who have good, strong stores can operate on those stores for months to years, but that is not supposed to be assumed.

rose

Hi Rose

Both my family doctor and my gastro tested my B12 levels. It was around 1000 back in February (after three fortnightly injections). I wasn't told what the second one was but it was down to 275 by the beginning of May, it took three-four months to drop that far. I don't absorb any B12 because of the Coeliac. One injection of 1000mg of Hydrocobamine wasn't enough to rid me of my symptoms. Both doctors said it would be fine for six months and I was given a form to retest in July. However (and luckily), my family doctor agreed to test me last month and said that it wasn't down to the accepted level of 160 but would give me one injection for the next three months and stop again. I know I had many symptoms well before it ever reached the eventual 140. My folic was down to 9 from 37 in the same time period (originally it was 4.something). I'm presently taking tablets of 10mg per day (prescribed) but I only take 5mg as I feel it's enough.

The accepted level of B12 in the UK and the Netherlands is 160. In the UK I was once tested and it was 265 and I was asked if I drank a lot of alcohol( ) and when I said no it was retested the next month and I was told it was fine.

I am just waiting to see my doctor and have booked an appointment to see the gastro earlier than planned but not until next month. If I don't get any joy I'll take matters into my own hands and may also do as you suggest regardless. Thanks for the advice. All the advice on here has helped me. And also I now remember that it was here that I saw the info on the gluten file and realised that I might have coeliac. My niece has now also been diagnosed with it.

I'll certainly look into your website.

Maria xx