Getting a diagnosis for pernicious anaemia.

[Louise234cats]

How to get doctor to test for pain and can i have it done while having b12 booster injections?

[fbirder]

The recognised test for PA is to test for antibodies to Intrinsic Factor. If you test positive then the chances are better than 95% that you have PA.

The problem is that about 50% of people who do have PA test negative.

[Sleepybunny]

Hi,

If you think you have PA, have you considered joining and talking directly to PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

I believe that it's possible to get a false positive in the IFA test if blood is taken too close to having a B12 injection. See section in link about IFA test about "Anything else you should know" for info about this.

Your GP is hopefully aware (sadly many are not) that it is possible to have Antibody Negative PA. See flowchart link down page.

Martyn Hooper , chair of PAS, tested negative more than once on IFA test before finally testing positive.

B12 Deficiency Info website

b12deficiency.info/

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

B12 book I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

I wrote a very detailed reply in another forum thread with links to other B12 books, B12 websites, UK documents/articles and other B12 info. Hopefully there'll be something useful in it for you.

healthunlocked.com/pasoc/po...

I am not medically trained.