Doctor not accepting my Intrinsic factor A test, wants to do her own.

[SunnyWorld]

How will that work? Next time it could say negative as unreliable. Also said that test doesn't mean I have PA there is another test they do also alongside the IFA test to conclude PA and both have to be positive. What test does she mean exactly? Said my IFA test slightly out of range but doesn't confirm PA. I was shocked! Help.

[Gambit62 Administrator]

Suggest you refer your GP to the BCSH standards in relation to being able to draw any conclusion from a negative on IFA.

onlinelibrary.wiley.com/doi...

These guidelines provide a summary of various tests and their limitations - including the fact that a negative on IFA is a long way from proving that you don't have PA, whilst a positive is good confirmation that you do.

The other test she is referring to is probably GPC - the WHO doesn't recommend this test as it tends to give false positives.

[SunnyWorld in reply to Gambit62]

Thank you I will, it's all so frustrating. I thought with the positive paperwork to prove it I was over the hurdle. Not so!

[Gambit62 Administrator in reply to SunnyWorld]

You could also ask your GP when the standards she is referring to were last updated. Many NHS regions are using standards that predate 2014 when there were some major changes to the BCSH standards, so may be working to very outdated standards

[SunnyWorld in reply to Gambit62]

Yes I need to as she also said she noted my injections were every six weeks when they should only be every 12. She is obviously going to reduce those also even though I mentioned the other symptoms of fatigue, memory problems, tinnitus, burning feet, tingling feet, random electric shocks, bumping into things, dizziness etc.

[Gambit62 Administrator in reply to SunnyWorld]

neurological symptoms should be a 8 weeks between injections - she definitely needs to look at the most up to date guidelines.

[Sleepybunny]

Hi,

You could show her this flowchart from BSH Cobalamin and Folate Guidelines which outlines when PA or Antibody Negative PA can be diagnosed in UK.

stichtingb12tekort.nl/weten...

About 50 % of people with PA have a negative result in IFA test.

Link about IFA test, see section on what test result means.

labtestsonline.org/tests/in...

About 10% of people with PA have a negative result in PCA test.

Link about PCA test, see section on what test result means.

labtestsonline.org/tests/pa...

I suspect that there are at least a few people with PA who have both negative results in PCA and IFA tests.

I think the reliability of both tests is discussed in the guidelines Gambit62 refers to.

Have you considered joining and talking 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....

PAS have a leaflet which PAS members can access " An Update for Medical Professionals: Diagnosis and Treatment "

pernicious-anaemia-society....

More B12 info

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books 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 mention recent change to BNF.

pernicious-anaemia-society....

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

More b12 websites

B12d.org holds support meetings near Durham

b12d.org/event

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

More B12 info in pinned posts.

I am not medically trained.

[SunnyWorld in reply to Sleepybunny]

Thank you so much for all your valuable info. I have tried to do so much research and got a positive result for PA but it still wasn't enough for my doc! Omg its unbelievable. I will gather and print info and go again but I'm not doing anymore tests its pointless