Question about PA diagnosis.

[Tiredallthetime2020]

How are you diagnosed wit PA?

[JanD236]

In my case I was diagnosed when blood tests showed that my B12 level was below the reference range, as was the active B12 (holotranscobalamin) level.

I also tested positive for intrinsic factor antibodies.

My symptoms were fairly mild, mainly excessive tiredness/exhaustion which I’d put down to age, menopause and a busy life.

I was very lucky to have been diagnosed and treated at a very early stage. This hasn’t been the experience of many people on this forum.

[Hidden]

I was diagnosed when an amazing nurse practitioner ran full bloods and found my b12 level was at 52, and ran a check for intrinsic factor antibodies, off the back of a conversation about my depression and general health. I think I’ve had it a while but nobody ever thought to check full bloods

[mcg-woo]

If you are positive for IF antibodies you are diagnosed with P.A., but that test only has about 50 percent positivity, so if you are negative you could still have P.A. My doctor says only way to know for sure is the schilling test which isn’t offered in US any more. My doctor says treatment is the same for me anyway—injections for life, so cause of absorption issue is irrelevant.

[FlipperTD in reply to mcg-woo]

Your doctor is well-informed. Schilling tests aren't available anywhere now, for a variety of reasons, more's the pity! Good luck.

[fbirder]

1. Have a test for Intrinsic factor antibodies. If positive then you have PA.

Otherwise:

2. Rule out a dietary cause. Do you eat lots of meat/fish? If so it's not dietary.

3. Rule out other causes. Do you abuse nitrous oxide? Do you have a fish tapeworm? Have you had stomach/bowel surgery? Do you take PPIs or metformin? Do you have Coeliac's or Crohn's disease?

4. You probably have PA.

5. Do you, additionally, have metaplastic gastric atrophy, restricted to the fundus and corpus of the stomach, long with high serum gastrin?

6. If yes, then you almost certainly have PA.

[Sleepybunny]

Hi,

If you suspect PA, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

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

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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.

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.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

If you're in UK, I suggest reading documents below.

BSH Cobalamin and Folate Guidelines

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

Above document has flowcharts that show a diagnostic process for diagnosing PA and Antibody Negative PA in UK.

BNF Hydroxycobalamin

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

Each CCG/ NHS hospital trust/Health Board in UK is likely to have its own local guidelines on treatment and diagnosis of B12 deficiency. If you're in UK, I recommend you track down the local guidelines for your area and compare them with BSH, NICE CKS and BNF links.

Useful B12 book

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date. If you're in UK, see BNF link in this thread for up to date info.

A Warning

B12 deficiency is not always well understood by GPs and specialist doctors so it pays to be well prepared for any appointments and to do a bit of homework.

If you're not in UK, this next link has links to sources of support in other countries.

b12deficiency.info/very-use...

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs. I'm in UK so some info may be UK specific.

healthunlocked.com/pasoc/po...