Pernicious Anaemia Society
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Possible B12 deficiency?

I have a long history of very large and painful mouth ulcers coupled with low ferritin of less than 5, fatigue and very pale skin. I have been given iron infusions to increase my ferritin levels which are now fine however i still have very painful mouth and xtreme fatigue which i am desperate to cure! I have tested positive for parietal cell antibodies however as my b12 level is 450, the gastroentriloologist I have seen says it must be a false positive. I am very disheartened as I thought that I might be closer to finding some help, however I just keep hitting a dead end. I am trying to convince someon to test me for intrinsic factor antibodies and to refer me for the active b12 test in London but im not holding out much hope! Any advice would be very much appreciated!

4 Replies

My advice would be to change gastroenterologist. We have just been through the iron infusion BLOOD transfusion route with my MIL. In this time my own B12 d was diagnosed and we read Could It Be B12? which has a section on misdiagnosed ID anaemia. We were mocked when we suggested b12 to her doctors. Her b12 was 256, exactly what mine had been when I almost died. (btw mine was 450 two years ago). We put her on high dose sublingual, folic acid and vitamin D, and her iron levels are stable, for the first time in many years. She is convinced it's the B12. I would strongly suggest equipping and treating yourself. The PA forum has all the info. I was finally diagnosed with a functional B12 deficiency, after much expensive private testing. I have to inject several times a day at the moment. I tested negative to everything. How I proved it to my doctors was I could show that high oral/sublingual supplementation did nothing to raise levels. A week of injections sent my B12 to 2000. You need to find out how well you can absorb via the different routes in. Good luck!


The attitude of your Gastro totally irritates me. Why would he say the antibody test result is unreliable, when it is in fact the serum B12 test that is totally useless. Show him this warning about the test:

And behind this warning is this research which shows that the current assay used for serum B12 is so inaccurate that it misses an astonishing number of people:

"assay failure rates are 22 to 35%"

So the mouth ulcers could certainly be due to B12 deficiency, but also important are Folate and Zinc. Copper should be tested alongside Zinc, if low in both then you need a supplement containing both (Higher Nature do Zinc balanced with Copper), because taking Zinc on it's own will deplete Copper further.

Have you ever been tested for Coeliac Disease? That can often be an underlying factor in all these deficiencies.

Here's an article about how positive Parietal Cell Antibodies (PCAs) is in fact a diagnosis of PA:

"95% have PCA and 59% have IFAb. So, IFAb-negative PA is often seen (41%) and seroconversion can take place. Diagnosis is even more reliable, when achlorhydria is present in PCA-positive persons. Healthy PCA-positive persons are probably predisposed to develop PA. Patients with cbl-deficiency, IFAb and/or PCA must be considered as having latent PA even if they have normal haemoglobin and normal Cbl-absorption."


I had your symptoms , I could not even use toothpaste , fizzy drinks blew myhead off , GP gave mouthwash which caused excruciating pain they said nothing was wrong , asked my dentist he got me a referral to Maxilio Facial at Derby hospital who diagnosed P/A . I have to keep my B-12 levels at a min of 1000 to be well . I am now having to buy and inject my own B-12 .


Thank you all so muh for your replies and sorry I haven't posted back but have been waiting for results to come back! Ended up getting the active B12 tested, which came back as 73 so I know I'm not B12 deficient, however mouth ulcers still continue. After having cameras both up and down, the gastro team have sent me a letter saying after looking at the biopsies, I have non-atrophic gastritis and mild inflammation in my stomach. I'm now waiting for an appointment for someone to explain this to me as I don't really understand if this has any significance upon my symptoms but would be grateful if anyone could shed any light!


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