Trying to get a diagnosis of PA via a GP - Pernicious Anaemi...

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Trying to get a diagnosis of PA via a GP

4daughters1971 profile image
5 Replies

Good evening

Due to feeling unwell with loss of appetite, feeling of being full, chronic fatigue, shortness of breath, impaired vision with floating black dots - i could go on! and already knowing i was anaemic, I asked the GP for a bit b12 blood test, this came back as normal but I have low serum iron and positive intrinsic factor antibodies. My GP doesn’t seem to understand what a positive IFAB test means and sugested to day that that meant it was in standard range! I have asked for an MMA test but have been told that this is not available in primary care. Does anyone have experience of taking the blood results to a private GP to get a B12 injection prescription or has anyone got any tips for explaining the PA symptoms and IFAB test to the GP as I seem to be getting no where. I should also point out that I already have an auto immune disease. Thanks

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5 Replies

It sounds very much like B12 deficiency, I suggest you get a print out of your blood test from your surgery, that way you know exactly how low B12 is. You have positive IFAB test that indicates P.A. if I'm not mistaken. I am sure someone will correct me if not.Sleepybunny posts will enlighten you on further information.

You need B12 Injections, also check folic acid results.

Have you been put on Iron medication (best to take with apple/orange juice (vitamin C))

Welcome by the way, if you have further trouble please come back, Plenty of support here !

Nackapan profile image
Nackapan

I would get a copy of your results as already suggested.

Get a second opinion or a referral.

A positive IFA test means you have PA.

B12 injections are needed for life.

Have you been prescribed high dose oral b12??

If folate is low

B12 shoukd be treated first depending on your actual result.

Even a negative IFA test doesn't rule PA it out .

If you've tested positive yoh need to keep a copy for your own records.

Auto immune disease can come in more than one unfortunately .

Hooe you get on okay.

Sleepybunny profile image
Sleepybunny

Hi,

Have you considered joining and talking to PAS who can offer support and pass on useful information?

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Have also read that a pepsinogen test might be helpful in diagnosing PA.

PAS website has useful leaflets/articles you could pass on and a page for health professionals that you could point your GP to.

pernicious-anaemia-society....

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates covering a variety of situations linked to B12 deficiency.

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.

A few go to Press/other media if unhappy

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

Accessing medical records

Best piece of advice I ever got was ....

always get copies of all blood test results.

I found abnormal and borderline results after being told everything was normal, no action.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

My best piece of advice to give is .....

get access to or copy of local B12 deficiency guidelines and compare them with BNF, NICE CKS and BSH links below.

Read blog post below if you want to know why I suggest getting hold of the local B12 deficiency guidelines.

b12deficiency.info/gloucest...

UK B12 documents

NHS article about B12 deficiency (simply written, lacks detail in my opinion)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

More on local B12 deficiency guidelines

I found out recently that CCGs (Clinical Commissioning Boards) have been replaced in July 2022 by Integrated Care Systems (ICS) and I do not know how this will affect local treatment guidance produced by CCGs.

Local guidelines are reviewed every few years and treatment guidance can change (not always in a helpful way) so keep an eye on them.

Normally I'd write a very detailed post but too tired today.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Sleepybunny profile image
Sleepybunny

Some PAS members have arranged in past for their GPs to talk to PAS.You could ask PAS about this.

People do not need a confirmed diagnosis of PA to join PAS.

PAS Contact Details

pernicious-anaemia-society....

FlipperTD profile image
FlipperTD

Scientist, not medic.

You say your B12 came back as 'normal' but 'how normal'?

If you've got IFAb then without B12 replacement therapy you can expect the B12 level to fall, and also the symptoms to get worse.

Positive IFAb is only found in PA.

Untreated PA has a very bad outcome indeed. The damage is cumulative.

Good luck, but don't spend too long wondering what to do, as time is of the essence.

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