P.A. test result negative

[Dogwalker123]

So results are back for my 15 year old and no PA has been diagnosed. Her B12 was 86 before loading injections. What does this mean now in terms of future required injections? If it’s not P.A. why is the b12 so low? TIA

[fbirder]

It is almost certainly PA, unless there's another obvious reason (being vegan, taking PPIs or metformin, having a fish tapeworm, abusing nitrous oxide, having had stomach of bowel surgery).

As the doctor - "Why does she have a B12 deficiency if it's not PA". Be prepared to argue that it's not dietary (a week's food diary with B12 values for each item should suffice).

Print this out - onlinelibrary.wiley.com/doi... - and highlight the bits on page 500 that talk about Intrinsic Factor antibody tests and their unreliability.

IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e.,

low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).

and on page 501.

Patients negative for IFAB, with no other causes of

deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response

The flowchart in Fig. 1 explains what doctors should do.

So the British Committee on Standards in Haematology (the biggest brains in British blood) say that people with signs of a B12 deficiency (like your daughter) should be given livelong treatment if they show a positive response to B12 injections.

[Dogwalker123 in reply to fbirder]

Thank you so much!!!! Your help in invaluable.

[Sleepybunny]

Hi,

I suggest you consider joining and talking to PAS.

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....

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.

There are PAS leaflets about juvenile PA that members can print out.

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

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

Is her GP aware that it is still possible to have PA even if IFA (Intrinsic Factor Antibody) test is negative?

BNF Hydroxycobalamin

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

BNF Hydroxycobalamin Children

bnfc.nice.org.uk/drug/hydro...

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 book is out of date. See BNF link in this reply.

"If it’s not P.A."

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

What's her diet like?

Does she eat a B12 rich diet eg plenty of foods such as meat, fish, shellfish, eggs, dairy and foods fortified with B12?

Has she been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Tested for H Pylori infection?

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any exposure to Nitrous Oxide?

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Is she on any medication for other conditions?

Some medicines can affect B12 levels eg metformin (a diabetes drug).

Any chance of internal parasites eg fish tapeworm?

Has she ever eaten raw or uncooked fish eg raw fish sushi, smoked salmon?

There are other parasitic infections such as Giardia lamblia that can lead to B12 deficiency.

Search online for "parasites B12 deficiency" if you want to know more but be warned that some stories may be upsetting.

Writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

More B12 info in my replies on the the thread below eg more B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.