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Pernicious Anaemia Society
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Advice please: what do I do next?

I've been on the TUK boards for a while but am new here.

I'm hypothyroid on t3 and t4. I responded very well to t3 for about six months but now I'm back to how I felt on t4 alone. My thyroid test results look good but I feel like a wet noodle and I realised that I have some other PA symptoms (numb toes, breathlessness, apathy, brain fog, tinnitus, and my most recent cervical smear was abnormal but colposcopy showed no lesions).

I've been supplementing for a couple of years (lots of supplements, esp b vitamins and d) and had good b12 results when tested in Jan 13 (I was probably still supplementing because I didn't know they were planning on testing b12).

In Jan 13, my b12 was 861pg/mL (191-663).

In Feb 14, my most recent results (I had stopped taking supplements, incl iron, for about a month before) were:

Serum b12 332ng/L (180-914)

Also had the following:

Serum ferritin 19ug/L (11-336)

Serum folate 18.7ug/L (3.1-19.9)

Serum d 86 nmol/L (76-220)

So, my questions are:

a) Does this look like possible PA? Or considering my ferritin, is it plain old anaemia?

b) Do I begin supplementing with a patch or injections to see if it makes me feel any better?

c) Should I have an antibody test or an active b12?

Many thanks!

9 Replies

Get some Thyroid Antibody tests done , you may have to go for Natural Thyroid with all the luggage that it brings .

Prof Weetman et all .


Hi. Thanks for replying.

Can you please clarify the connection you're making between thyroid antibodies, ndt and b12?

I've had thyroid antibodies tested and they're consistently elevated. I see a private doctor who is very pro-Armour (so no luggage for me :-) ) but I was advised that abs should be lower before starting ndt.

At the moment, all my thyroid levels look great, but my energy is lower than ever, so I'm turning my attention to other issues like the fact that as soon as I stop supplementing all my nutrients seem to sink like a stone.


PA often occurs with other auto-immune problems.

B12 is a water soluble vitamin so excess is passed out in the urine so very difficult to overdose on it - unlike some of the other B vitamins.

Does seem to be a slightly higher risk of some cancers due to the role B12 plays in cell formation.

Lots of celebs have B12 treatments on a regular basis and only report beneficial effects. If you have the chance I would definitely give B12 shots a go, in consultation with your physician.

Might also be a good idea to go through symptom checklist and take that along to your physician



Hi. Yes, I have other autoimmune stuff going on which is why I was wondering if I should have the ab test. It is very unlikely that my gp will be interested in pa unless it's as a fait accompli and I get the tests done myself, but I have an appt next week and can always run it by them.

Do you know if my ferritin levels have any bearing on anything?


sorry, can't answer on that one - pretty new to all this myself and whilst I'm picking up some of the jargon there's a lot in the blood tests that just washes over me at the moment.

My B12 deficiency was picked up accidentally in hospital - I don't know what the results were on that - though guess it must have been pretty spectacular from what I read for them to have sent me home with a replenishment routine. My GP doesn't really seem to know much about it. There's a history of late on-set Type 1 diabetes in my family but I don't have the gene, and that's on my mother side but I suspect if it came from anywhere it was probably my dad's side,


I can only comment through personal experience , usually with P/A it is impossible to raise B12 levels without injections due to autoimmune damage to intestines .I have serious autoimmune damage caused when after 20yrs of trouble free Diabetes was switched from Bovine to "Human" Insulin in 1980 .. But due to gerrymandering between NHS and Novo was stuck on it untill 1987 , but by then autoimmune was well advanced . It took out Thyroid and digestive part of Pancreas ,caused P/A , damaged Adrenals .

Auto immune is usually hereditary can effect multiple glands , but Endocrine science is not very advanced and is in the grip of commercial interest (Cartels ) not at all transparent .


Yes, thanks for your reply and sorry to hear you've been unwell, but I was interested in what you said about thyroid antibodies, ndt and b12 - ?

I get a lot of info on thyroid matters on the TUK forum, but I've come here because I can't seem to keep my b12 levels adequate and I have a lot of pa symptoms.


Your ferritn is very low as is the d , with autoimmune you need to be near top of the range , I woould try B12 injections , I have to keep my B12 a min of 1000 to stay well .


Yes, thanks. Am trying to see if I can get injections, which is why I was thinking about having the pa antibodies test. If I'm within range I doubt my gp would prescribe them.


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