Pernicious Anaemia Society
15,512 members10,918 posts

British Society of Ecological Medicine

Martyn (our Chairman) has recently been to give a talk to the British Society of Ecological Medicine. This partnership ensures that we will be getting the concerns of PA sufferers and their support people out there! We should also hopefully soon have a list of doctors in the UK who agree that B12 infusions are vital in treating Pernicious Anaemia - we'll update you when this becomes available!

If you decide to join us as a member we hope that you know that the membership fee helps support such crucial work as this - we are a small charity and every penny helps!

5 Replies

i have just joined! altho i have enough b12 692ng/l i have had nervous sytstem probs for two year snow, twitching tingling, and pressure in my head that build s and biulds until it is so serve it wakes me, i cant do anything about it, it gradually subsides, but i am trembling, heart pals and short of breath, the pain in my head is like live wires touching or as if my blood vessels are swelling and my head has to burst, no one has found the cause, i have thyroid /adrenal low cortisol, very very dry skin, stage 3 kidney, degenereative spine, dry mouth dry fat tongue, so much hairloss, its nearly all gone and what is left is so thin and miniturised now, poor sleep poorememory and sometimes i feel that i am 'not really' here' its aweird feeling. i am wondering if i am absorbing, doctors this week wish me luck.


Good luck Pettals, hope you find some answers. x


doubt it very much!


''i am wondering if i am absorbing,''

recommend nutrient testing full iron study, serum folate, zinc and copper, serum b12 you said you already have, and a look at free t3 free t4 thyroid hormones as well as the TSH. Your cortisol level if low is very important and really needs sorting, your hormones cannot work without cortisol, your blood glucose cannot be maintained properly without cortisol. Problems with kidney compound your problems but looking first into the most obvious causes would be logical.

hugs and hope you get some joy




I have an underactive thyroid ( for 7 years) have been basically anaemic for 36 years (normally somewhere between 7.75 and 11) and have had IBS like symptons for 14 years.

Six months ago I felt really poorly, and after being told it "was my age" read further on the menopause and came across info on B12 deficiency. This was me to a T, and I requested a blood test from Dr but was initially told it was ok, but only found out by accident (chatty nurse at smear test) what the numbers were - 270 B12. I went back to Dr and asked if my B12 could be investigated, but told it was within normal range so no. I therefore started supplementing myself on B12 on 2000 micrograms per day for 7 weeks and felt so much better. Went back to Dr but he would not retest, so stopped tablets for 6 weeks and felt myself declining again -confused, no memory/concentration, tingling tongue, fingers, blurred vision, dizzy spells, vertigo/dizziness and generally feeling really fed up and struggling at work.

I went back and demanded a blood test to ascertain my levels, and my B12 was now 368. Dr agreed to give me one injection last week, and within an hour the tingling tongue had stopped, tingling fingers eased and brethlessness noticibly much improved. I am now sleeping 4-4.5 hours per night (which is wonderful). But he will not allow me another injection for 6 weeks. But my question is, am I within my rights to ask for full blood screening now as I believe I have PA, and want to know one way or the other, or do I have to wait for the Dr to agree? I would rather go to a specialist and get this sorted, as I am having problems at work. I am currently taking 2,000 micrograms of B12 daily, so that will influence results but I can't carry on like I have been, and feel really desperate.



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