Query of whether I have Pernicious Anaemia

[Jacklover]

I have been told by one Dr that I have Pernicious Anaemia as my B12 was low this year and last year. My ferritin was also low. I had been on a high dose of PPis for 4 years and intermittently for many years before that. Intrinsic factor this year was negative and when I had a gastroscopy last year a biopsy of my stomach only showed reactive gastritis, despite me eating a very clean low acid diet with no alcohol and no non steroidal anti inflammatories. (The gastroscopy was not specifically done for diagnosis of any pernicious anaemia, as was done prior to the knowledge of my B12 status)

I had an iron infusion and was commenced on B12 injections. I have recently seen a Gastroenterologist in a different part of the country who was not convinced that I had Pernicious Anaemia as I had had no confirmation through a positive test. She has booked me for another gastroscopy for her to do biopsies to confirm whether I have pernicious anaemia or not.

I am now wondering whether I do have true Pernicious Anaemia. I self inject twice a week and sometimes still have pins and needles and weakness, however has much improved. The imporovement could have been the result of having the iron infusion anyway. And I have since spoken to a Thyroid specialist who thinks that the symptoms may be due to my Hashimotos disease, so my levothyroxine has been increased.

Sorry this is so long winded, but just wanted to ask whether it is ususal to have to get a positive result from a gastroscopy or by any other means to be certain that you have Pernicious Anaemia??

[Nackapan]

Ppi' s ard known to slow the absorbion of many vits snd minerals including B12 as you know.

Thd most important thing is having enough B12 to do repairs as Low for so long.

Pernicious Anaemia is notoriously difficult to diagnosis as the test used IFAB only picks up about 40-50 % of those that have it.

Several have only got s diagnosis on the third of fourth test .

It is the mist common reason for Low B12 if not a vegan.

Its also common to have more than one autoimmune condition.

It must be very difficult to decipher what is what in your case

I expect the gastrostomy gives more information for the clinical picture to give the diagnosis.

You've no worries about over dosing on B12 whilst you are working it out.

[Jacklover in reply to Nackapan]

Thank you for your reply.

[Sleepybunny]

Hi,

Just a quick answer as feeling very tired.

"Intrinsic factor this year was negative"

IFA (Intrinsic Factor Antibody) test is negative in about half of people with PA.

There are many possible causes of B12 deficiency eg diet, coeliac disease, Crohn's disease, diverticulitis, damage to terminal ileum (part of gut where B12 is absorbed), some drugs/medicines, excessive alcohol intake etc

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

Search for these documents to find out more.

1) "BSH Cobalamin and Folate guidelines" published 2014

BSH document mentions Antibody Negative PA.

2) "NICE CKS Anaemia - B12 and folate deficiency" published a few years ago.

3) "NICE B12 deficiency guideline" published March 2024

I have some reservations about the new NICE guideline above. It uses the term AIG (Auto immune Gastritis) rather than PA.

4) Try to find local B12 deficiency guidelines used by your ICB(Integrated Care Board) in England or Health board in Wales/Scotland. These should mention PA.

Have you considered joining PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

Useful leaflets and a page for health professionals and details of support groups.

I left detailed replies on this thread.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Jacklover in reply to Sleepybunny]

Thank you for your reply. I will have a read.

[Cornwaller]

Given that your b12 deficiency symptoms, pins and needles etc,have improved with injections I would be cautious about stopping. The gastroenterologist seems to be on a mission for some reason?

[BirdlessBox]

My impression is that "PA" is an old term that originally was used to refer to any persistent severe B12 deficiency, but later was seconded as a term for the autoimmune causes. I think they have more exact terms now and this helps with appreciating there are other valid causes for it and not dismissing the problem just because one might have a negative antibody test.

[Fluffyfloo]

Yes. If you have a negative intrinsic factor antibody test and you want an answer, then a biopsy is more definitive. (At least- that's what a gastroenterologist told me.)