Approx 5 years ago I started to be treated 3 monthly with B12 injections after I'd had fatigue and a number of digestive problems low B12 for a while and been tested for PA (antibody test done twice showed I did not have it, although there is family history). Levels kept dropping despite the loading dose so I was given it every 3 months for a while. (I eat a good amount of meat.) Meanwhile I also tested low for ferritin and have eventually had 2 iron infusions (oral iron would not work well for me because of the effect on the stomach). Because of the oesophageal motility disorder I have, I have had numerous investigations which have confirmed that I do not have Crohn's or coeliac disease which might explain the low B12. Period blood loss could explain the low ferritin but I am sceptical about that. Have also had low vitamin D (not on supplementation) and have never had low folate officially, but has always been at the lower end of normal.
The other side of the picture is that I have had much more frequent migraines over the last year- now 2 per month, sometimes with vertigo & sickness which I first thought was benign positional vertigo. ENT and migraine specialist have now confirmed that they think it is migraine related vertigo. Also over the last year, I have found that the tiredness and brain fogs have come back in the last 6 weeks before a B12 jab, so with the agreement of the GP, am now having them every 6 weeks. Despite this regime, I am now getting frequent pins and needles, especially at night, and assume this is B12 related, though it is a new symptom for me. Have also had itchy feet which is odd for me, because although I have a history of atopic eczema, have never had it on my feet.
Anyone have any suggestions? Should I try folate supplemetation/ oral B12?
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ClaraJ
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It reads like you should have had loading doses of B12 (?), then with neurological symptoms move to once every 2 months, but only after no more improvement is achieved after loading doses (one ever other day).
It may be best to see a haematologist in your case.
•For patients with no neurological involvement, treatment is with six injections of hydroxocobalamin, 1 mg in 1 mL at intervals of between 2-4 days.
•Subsequently, 1 mg is usually given at intervals of three months. There is as yet no evidence-based guidance as to the optimum regime but the National Institute for Health and Care Excellence (NICE) is considering releasing guidance in due course. It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[4] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels.
•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]
•Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit.
•Oral iron therapy should be given before B12 if iron deficiency is diagnosed by an absence of stainable Fe in the bone marrow or other parameters (eg, serum ferritin <449 pmol/mL).
Just because you tested negative forb IF antibodies not mean you do not have PA, it classes you as IF abs negative PA. See the same link above:
"Autoantibody screen[10]
IF antibodies (IFAs), if present, are virtually diagnostic (100% specific) for pernicious anaemia. However IF antibodies have lower sensitivity with studies showing IFAs present in as few as 27% of patients. Therefore the absence of IFAs does not rule out the diagnosis of pernicious anaemia."
If you can read these new guideline, see:
Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders
Taking a multi vitamin will help make sure you get all the (B) vitamins required for metabolising the B12, if actually deficient in folate your GP would prescribe 5mg folic acid, for 4 months, but I'd never recommend taking that if you are not actually deficient, as there are uncertainties if to much folic acid (artificial folate) is harmful.
"Several recent studies have demonstrated that high-dose folate may increase the risk of cancer.[7, 8, 9, 10, 11, 12] It is particularly concerning that the groups who are over-supplementing are among the highest risk for accelerating the growth of malignancy through over use of folic acid, while many in the groups that are under-supplementing are women who could confer benefits of folic acid supplementation to a developing fetus. Clearly, folic acid supplementation continues to be an important primary care and public health issue. "
I hope this helps you, a referral to a haematologist would be good I think for you,
Hi Marre, Thank you so much for all this- will have a look through everything. Complicated in that I did not originally seem to have neurological symptoms. Thanks again!
I was diagnosed relatively recently (2012) but think I'd probably had problems for years but for me most of them manifested themselves in the psychological sphere (depression). However, I also have a long history of migraines (seems to run in maternal side of family and disappear with the menopause) and a long history of tingling in the hands which OT at work suggested was carpel tunnel and told me to get my GP to test but my GP at the time (15 years ago - told me that there wasn't a test for carpel tunnel ... sometimes wonder what is going on with GPs :)). However, I did find that sleeping in a wrist brace to keep the position of the wrist straight helped a lot with tingling ... and I don't think that necessarily rules out effects of B12D creeping up on me but it would make sense to me that if it helps with stopping nerves being constricted it could also help with nerves short-circuiting (my simplistic way of looking at the effects of de-mylenisation - don't know if that is spelt correctly). The tingling certainly gets worse with water retention around my period ...
My migraines were/are 2x per month - just at points when hormones change ... and think that the middle of the month tended to be worse for me. My big problem wasn't so much the headache as the gut spasms and if I got out of bed it was head straight for the loo and ... basically too much detail :). The severity of the migraines got worse in my 30s ... in my mid-40s I discovered that running about 0.5m a day seemed to reduce the frequency and severity ... though around the time I hit 50 (when - thinking about it I started to experience the fogs and tiredness - the migraines got worse again) ... I'm on the cusp of the menopause now so couldn't really say if it was that getting my B12 under control that means that recently they seem to have gone back to not being so severe ...
So, I guess all of this is a really long-winded way of saying that human bodies - and in particular female human bodies - can be incredibly temperamental and complex things and there could possibly be more going on that just B12D. It could be something completely different or it could be things interacting.
Might be worth keeping a diary of when symptoms are at their worst.
I've just been reading in 'The H Factor' by Patrick Holford, that migraine sufferers (especially with aura and muddled thinking, extreme exhaustion, anxiety, numbness or tingling sensation in one side of the body) are far more likely to have an inherited MTHFR gene mutation and high levels of homocysteine - responsible for heart attacks, strokes and many other nasties.
The book suggests following a homocysteine lowering diet with supplements, mainly B12, B6, B2, folate, C, TMG, zinc and magnesium.
My son, a diver, told me that diving medical advice and research advise migraine sufferers to consult their doctors before diving, as research has attributed migraine with aura (which I've had on and off all my adult life) to a tiny hole in the heart. Mine is triggered by chocolate, cheese, tomatoes, red wine, bright lights, and hormonal changes.
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