Is it PA?

[WanderingSassenach]

How do you know for sure you have PA and not just low b12? My dr wouldn't do further testing.

[fbirder]

There is no definitive method.

If you have a deficiency and you eat plenty of meat/fish, or you take B12 supplements then you have an absorption problem.

If you have an absorption problem and you have not had surgery to your stomach or gut; you do not abuse nitrous oxide; you do not have a fish tapeworm; you do not have coeliacs or Crohn's disease; you do not take PPIs or metformin; then you almost certainly have PA.

But, as long as the deficiency is being adequately treated, it doesn't matter if you have a definite diagnosis.

[WanderingSassenach in reply to fbirder]

I was tested for parasites along with getting my blood work done because my oldest son has ongoing issues with loose stools and we just wanted to rule things out for me as well. I had nothing. I don't take any medication that would deplete my b12 but I used to take over the counter pills for GERD now and then. But I had been tested many times over since then because if pregnancies and no b12 deficiency was noted until now. It blew my mind to be honest because I eat relatively well, just not whole food, majority of it is processed but decent quality. So this makes no sense to me at all.

[fbirder in reply to WanderingSassenach]

Pernicious Anaemia can strike anybody, of any age, regardless of lifestyle.

[Sleepybunny]

Hi,

Some links that might be useful...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

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.

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.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic with an in range B12 result.

Vital to get adequate treatment. untreated or under treated B12 deficiency can lead to permanent neurological damage including problems with spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

B12 article from Mayo Clinic

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Document above has useful diagnostic charts.

BNF Hydroxycobalamin

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

NICE CKS

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

Local Guidelines

Each CCG/Health board /NHS hospital trust in UK will have its own local guidelines on diagnosis and treatment of b12 deficiency, Try to track down local guidelines for your area and compare them with BSH, BNF and NICE CKS links if you're in UK.

Useful b12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNFtreatment info in book is out of date. See BNF link in this reply.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

[Sleepybunny in reply to Sleepybunny]

I've written some very detailed replies with lots of B12 info eg more books, symptoms lists, causes, more B12 documents/articles, b12 websites,that you may find of interest. See links below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

I'm in UK so some info may be specific to UK.

[WanderingSassenach in reply to Sleepybunny]

Thank you very much!😀