We have a volunteer who has been told that she has been suffering from Chronic Fatigue Syndrome for the past ten years. So bad is her fatigue that she hasn’t been to school since she was thirteen. Se wakes at 7am and is back in bed by 1pm before rising again at 7pm and retiring at 11pm.
The first time I saw her I thought she had B12 Deficiency. I asked to see her tongue which was swollen.
After pestering her for a few months she finally agreed to ask her doctor to check her B12 levels. “I’ve had so many tests over the past ten years they will almost certainly have checked my B12” she said, but finally went to her GP and asked for the B12 Test to be carried out.
Guess what? Level comes back at 120mcg/ml. So, injections were started? No! Doctor will only allow her injections if the Anti-Intrinsic Factor Antibody Test proves positive. We await the result of that next to useless test……
can you help me please. I was diagnosed with Fibromyalgia 6 years ago. At the time my gastro enter ologist found that i tested positive for antibodies for intrinsic factor. My doctors won’t accept that i think it it is pa despite my serum levels of 200 (range is 180 locally) neurologist recently said that I am both physically and mentally exhausted. I have taken your test and seen to think I scored in upper 70s. I have just had an insulin stress test because MRI showed empty sella. (MRI ordered because my brother has ms for 25 years).Guess What my results are borderline but I don’t need treatment. I can’t work, learn anything new or even read much of the time. Regards Julie
Dear Julie, and many others,
You may well have B12 deficiency. Laboratory tests may miss up to a third of cases of B12 deficiency. The only way to find out may be to take vitamin B12 tablets. Try them for a month or two to see if they make any difference. If they do, you may need to continue taking them for the rest of your life. Actually, research has shown that B12 tablets, 1000 or 2000 microgram a day, are as good as or better than injections! You can buy 1000 microgram tablets at Holland and Barrett, Boots, Amazon and other online stores. A Cochrane review of this research, available at http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004655.pub2/abstract quotes Lederle [1991] who said that ‘oral vitamin B12 replacement [is] one of “medicine’s best kept secrets”‘. Cochrane reviews are regarded as very authoritative systematic reviews of research in the medical community.
Ah – here we go again. There is ample evidence that B12 tablets certainly do raise the level of B12 in the patient’s blood. However, this seems to be only half the problem. If you take Cyanocobalamin tablets you have to convert that to Hydroxocobalamin. And if you manage that you then have to convert the Hydroxocobalamin to Methylcobalamin and to do that you have to have adequate (maybe elevated) levels of Folate (folic acid) in your blood before you conver the Methylcobalamin to Adenosylcobalamin. As well as this, just because some people have high or adequate levels of B12 in their blood doesn’t mean that they are symptom free of B12 Deficiency. There is also the problem that some people have very low levels of serum B12 yet have none of the symptoms. Nobody has been able to explain this phenomena. It appears to be all to do with what is happening at cell level.
The Cochrane review quoted let to the PA Society issuing a Policy Statement on Cyanocobalamin tablets being used to treat B12 Deficiency. We believe the Review is seriously flawed. And let’s not forget that Cyanocobalamin tablets replaced injections in Canada two years ago – but the vast majority of doctors have resorted to monthly injections.
Some people with B12 Deficiency will respond well to oral supplementation – but, it appears, not all will. The Policy Statement on B12 Tablets can be found at the beginning of the post.
I’m feeling quite angry with the NHS. I asked for a blood test ywo years ago as I was exhausted, had sudden weight loss and a family history of PA. THey managed to investigate nearly everything except my enlarged red blood cells – which they did not tell me about.
I have just had another set of blood tests and have come back saying they believe I have PA. These tests were to check for reasons behind the inflamation of many of my muscles on one side of my body – although there is some tearing although I had no actual accident.
They now tell me that my red cells are larger and have almost certainly got PA. I have just had to have more blood tests, B12 and folates, full blood count and coeliac. I asked why the coeliac as that was negative 2 years ago. However I checked it out on the web and have seen why. But I was diagnosed as gluten intolerant 17 years ago so am on a gluten free diet; so the test will be negative.
I feel like a product being sent through a factory rather than someone who might possibly know what might be wrong with me. But I was told I did not have PA and now Iam told I probably do. It has affected my life severely for the last few years and I am just fed up. I wish I had gone to a private doctor.