Do I have Pernicious Anaemia or not, conflicting results confusing Drs

[Barry1955]

Hi all,

I had a positive IFA and PCA blood result last November. GP gave me a leaflet about PA and told me I had PA and would nd treatment for life, although he said my B12 level was not low at 348 and other bloods were ok. He gave me 1 jab as a trial, which did nothing, so I joined PA Society and went back asking for loading doses based on alternate days until neuro symptoms stopped improving. GP stated they only give 6 jabs over 3 weeks, so accepted reluctantly. GP said he wanted me to see a Gastro Consultant for further information, and also took a second PCA blood test which was again positive ( lab said no need to re-test IFA )

Outcome of Gastro visits was a Gastroscopy which showed Chronic Gastric Atrophy but no other issues on camera. Result of biopsy showed H.Pylori present ( successfully treated ). Gastro did another PCA test which came back negative, so was discharged back to GP stating no evidence of PA , totally ignoring my positive IFA result, and advising I stop selfinjecting which I started before seeing Gastro with vast improvements in my neuro symptoms ( still get intermittent tinnitus ).

I had been on PPI`s for over 10 years , to protect my stomach from all the meds I was put on due to Heart Disease, which I no longer take. I have put a letter on my GP records stating I will continue self injecting as no one can tell me why I had a positive IFA result, and all info states a positive IFA indicates Pernicious Anaemia.

My confusion is has the presence of IFA caused the H.Pylori infection, or has taking PPI`s caused the H.Pylori leading to the IFA positive result ?

[Cobalamin4Life]

Hi Barry, I know how confusing this can all be. I think what may be happening in your case is as what did in mine. If I am reading correctly, you have the gastro symptoms, neuro symptoms but not hematological (bloodwork showing anemia). That describes my issue as well.

To answer your question at the end, h.pylori is caused by a bacterial infection, the presence of antibodies is a separate issue. I don't think that taking PPIs could cause h.pylori or a positive IFA result. PPIs are to reduce stomach acidity, h.pylori thrives in an acidic stomach. H.pylori infection sort of just happens. There is a connection between the development of autoimmune gastritis (which leads to pernicious anemia) and a history of h.pylori infections.

My thought is that you are somewhere in between atrophic gastritis caused by h.pylori and autoimmune atrophic gastritis. Autoimmune gastritis leads to pernicious anemia as the parieta cells that produce both stomach acid and intrinsic factor needed to absorb b12 through the stomach are depleted.

Since you currently have h.pylori this may mean that your stomach atrophy is affected to a lesser extent than the full blown autoimmune gastritis (because h.pylori requires an acidic pH to thrive in the stomach). This is from what I have experienced and read based on my own issues, an Admin or Forum Support member may have more insight into this.

I have read on here that the IFA and PCA tests may not always be accurate to diagnose PA and I have still not sorted that out myself. Still a bit foggy. But if you have positive antibodies in the presence of a positive biopsy for atrophic gastritis, that seems adequate enough to receive B12 treatment in the presence of symptoms.

If your B12 level was only 348 and B12 injections gave you relief from your neuro symptoms I would say that if in your shoes I would also continue with B12 injections. This is only my opinion based on what I have experienced. I wish you the best in getting all of this sorted out. I know firsthand that it's no easy task.

[Cobalamin4Life in reply to Cobalamin4Life]

I spelled parietal incorrectly up there ↑ please note parieta=parietal

[Barry1955 in reply to Cobalamin4Life]

Hi Cobalmin4Life, Thanks for the reply.

I forgot to mention that the Gastro reported no sign of absorption issues, and you are correct that I have no Hematological signs.

I`m pretty sure I have had issues for over 10 years, having had numerous tests etc for fatigue/ depression/ mood swings etc., so even without consent of GP, I will continue to self inject.

ATB

Barry

[Cobalamin4Life in reply to Barry1955]

How did your gastro determine that there were no signs of absorption issues? Did you obtain a copy of the biopsy report?

It seems to me that with the diagnosis of gastric atrophy you would have some loss of parietal cells and hence a potential absorption issue.

Check the biopsy report if you have it and see if parietal cell loss is mentioned. (Sometimes parietal cells are called oxyntic cells.....same thing, different word).

Best regards!

[fbirder in reply to Cobalamin4Life]

The IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA.

However, a positive result is a sure-fire, 95% certain indicator of PA.

The PCA test isn't recommended in the UK because it is prone to false positives, especially in older people.

There is some thought that H. pylori infection can kick the autoimmune system into attacking the GPCs, but I've not seen any evidence for it.

[Sleepybunny]

I have read that having an IFA test within 2 weeks after a B12 injection, can lead to a false positive result.

labtestsonline.org/understa...

I had to resort to self treatment as at time was unable to get B12 treatment from NHS , the fact that many symptoms including neuro symptoms improved was enough confirmation for me that I had B12 deficiency.

This flowchart from BSH Cobalamin and Folate Guidelines indicates in my opinion, that a clinical response to B12 injections in a symptomatic patient is confirmation of PA (I'm assuming other causes of B12 deficiency, such as diet, have been excluded)

stichtingb12tekort.nl/weten...

[Cobalamin4Life]

Just a couple of articles that I have found regarding h.pylori and consequent autoimmune gastritis for an interesting read. (The scientist in me can't leave any stone unturned apparently).

ncbi.nlm.nih.gov/pubmed/910...

ncbi.nlm.nih.gov/pubmed/152...

The second article states "in genetically susceptible individuals, H. pylori infection can start or worsen gastric autoimmunity, leading to atrophic gastritis".