Do I have P.A

[Ralphylyn123]

Hi,good day all,I am confused whether I have P.A.or not.My intrinsic factor test came back as negative but reading other people's post I am not sure is that the test that determines whether you have P.A.or not...In a nutshell what is the test that determines whether you have P.A or not..thanks

[wedgewood]

There is no test that is guaranteed to diagnose PA. Yes , you can have PA , but get a negative Intrinsic Factor Antibodies test ! A doctor should know that if he/she has read the guide-lines .

If you have the symptoms of PA , have a raised Homocysteine result , a low b12 level( but some P.A. patients can have a normal B12 result )This should lead a doctor to suspect PA.as long as you have tried B12 tablets without success , are not vegan , a strict vegetarian , haven’t had bariatric surgery , Dont have helico bactor pylori infection , or have fish tapeworm , you should be given B12 loading doses , then treatment .

As there is no 100 percent certain test for P.A it can be difficult to diagnose . You need a good doctor with an enquiring mind .

Such doctors are difficult to find . That’s why PAS was formed . And that’s why we are forced to self inject even if we have proven PA, because some of us need more injections than once every 3 months.

[Ralphylyn123 in reply to wedgewood]

Thank you so much for your detailed report..what a minefield we are in.

[wedgewood in reply to Ralphylyn123]

“Minefield” is an accurate description!

[Rexz]

The only test available today that will confirm 100% Pernicious Anemia PA. I'll use autoimmune PA. Is a biopsy of the gastric mucosa in the Fundus of your stomach. Pathologist can see the damaged Parietal Cells and those that are now replaced by Gastric Intestinal Metaplasia (GIM).Other tests along with symptoms that are diagnostic are IFAB very specific but a lot of false negatives (the test is designed that way to eliminate false positives. The other two tests along with symptoms are Parietal Cells Antibodies (PCAB) plus high serum Gastrin. PCAB by itself is not diagnostic as there are other conditions where this test may show positive but it coincident with high Gastrin is considered diagnostic for PA. In any case anyone with a positive IFAB, PCAB plus high Gastrin should undergo a Gastroscopy (Europe) or upper GI Endoscopy (US) to both CONFIRM diagnosis, screen for Gastric Cancer, and perform Gastric Mapping biopsies in accordance with MAPPS guidelines (Europe) it modified Sydney Protocol (US). The gastric mapping is to asses state of Autoimmune Metaplastic Atrophic Gastritis (AMAG) and risk for gastric cancer to determine periodicity of future gastroscopy/endoscopic surveillance.

Oh geez, I've rambled again!

Hope this helps. Rexz

[Ralphylyn123 in reply to Rexz]

Thanks Rex

[Cherylclaire Forum Support]

Intrinsic Factor antibody (IFab) test: a negative result is likely even with 40-60% of those that have pernicious anaemia (PA). A positive result, however, has a 95% accuracy - which will give you a PA diagnosis.

Best out of three, then ?

Martyn Hooper, founder of the Pernicious Anaemia Society knows exactly how difficult a diagnosis can be, since it was only on his third test that he got a positive result.

Getting three IFab tests may be next to impossible if you don't have a GP who understands this.

I have had three IFab tests - all negative. This did not surprise me as I have a diagnosis of functional B12 deficiency.

[Ralphylyn123 in reply to Cherylclaire]

Thanks Cherylclaire

[Rexz in reply to Cherylclaire]

Yes, my IFaB tests were negative for three years. Then in January I got my first positive. Even though I had a firm PA diagnosis through biopsy back in 2020 I continued to do this test to see if what I had read was true. That is that the IFaB test sensitivity is dialed down to eliminate false positives and that IFaB increases over time as the disease progresses and therefore should eventually show up.

[Sleepybunny]

Hi,

Thought you might find this interesting.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines (UK health document) which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

I started a thread recently "Useful links - tests for PA and B12 deficiency".

healthunlocked.com/pasoc/po...

NICE CKS (Clinical Knowledge Summary) for B12 deficiency includes the statement

"Antibodies to IF are very specific for pernicious anaemia, however, they are present in only 50% to 70% of people with the condition."

cks.nice.org.uk/topics/anae...

cks.nice.org.uk/topics/anae...

Have you considered joining PAS?

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Lots of other useful info in pinned post "Various PA/B12D resources".

Pinned posts are on right hand side of screen if using computer.

[Ralphylyn123]

Thanks Sleepybunny..will do