intrinsic factor test: My GP agreed to... - Pernicious Anaemi...

Pernicious Anaemia Society

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intrinsic factor test

Painttube profile image
18 Replies

My GP agreed to do an intrinsic factor antibody test. The test he did was IgA and the results came back as within normal range.1.10gl normal range 0.8 to 4.0 .

Was this the correct test for pernicious anemia?

Thank you

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Painttube profile image
Painttube
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18 Replies
wedgewood profile image
wedgewood

There is no “ correct test “ for Pernicious Anaemia! You can have P.A. and the Intrinsic Factor Antibodies test can come up negative . Only about 50’% of PA patients get a positive result ! I’m afraid that doctors need to be detectives when they are dealing with a possible PA patient . They must NOT rely on the IFAB test to diagnose P.A. They must rely on symptoms that present and Homocysteine results amongst other indications. If they took the trouble to find out about P.A. they would know this . PAS have leaflets for doctors to read . You could down load them . Best of luck .

Painttube profile image
Painttube in reply to wedgewood

Thank you for replying. I understand this but the GP didn’t agree. I guess I have more of a fight on my hands. I left leaflets for him too. I have an MRI this week and I’m seeing a neurologist in January so I’m hoping for some answers.

Justine_Case profile image
Justine_Case

I thought IgA was a blood test to determine if you have an autoimmune disease, in particular celiac.

I may be wrong though, hopefully someone better informed can help.

Painttube profile image
Painttube in reply to Justine_Case

Thanks for your comment. Yes I have tried to look this up as I too am not sure if it’s the correct test.

Cherylclaire profile image
CherylclaireForum Support in reply to Justine_Case

IgA is not the IFab ( Intrinsic Factor antibody) test.

The IFab test can tell you if you have PA (with 95% accuracy for a positive result) - but cannot be called a "PA test" unless it is understood by all - including GPs and consultants- that it will give a positive in 40-60% of those who have PA.

So one positive result will give you a PA diagnosis, and does not need repeating (keep a copy) but a single negative result is not proof that you do not have PA.

Martyn Hooper. the founder of the Pernicious Anaemia Society (PAS), had to have three tests before getting a positive result. This does NOT mean he did not have PA when first tested. He also has some irreversible nerve damage.

Best thing that anyone here can do is to read research, learn about their condition, so that they can present a case for correct diagnosis and treatment, because whatever the cause of their B12 condition, the symptoms can be difficult to live with. Many medical professionals make light of this life-changing condition - because they do not fully understand the potential implications.

No-one here ever skipped down the road after getting a loading injection.

Not to my certain knowledge.

Painttube profile image
Painttube in reply to Cherylclaire

Thank you, what you say has confirmed my understanding on this and I really appreciate your reply. I’ll keep going with my efforts to get some more investigations.

Cherylclaire profile image
CherylclaireForum Support in reply to Painttube

Hard work to push when depleted. Learn what you are able to get from medical research.

Hoping that the new NICE guidelines, due out in early 2024, can provide the back-up we need. Then we can stop having to fight this as exhausted individuals.

wedgewood profile image
wedgewood in reply to Cherylclaire

NICE. guidelines are just that . Doctors are not obliged to follow them . But they can be a useful tool when dealing with doctors .

Cherylclaire profile image
CherylclaireForum Support in reply to wedgewood

I'm thinking that if they do not have the medical evidence to convincingly push in the other direction, we have more than half a chance.

Isn't it hard to type with crossed fingers, Wedgwood ?

CRK1 profile image
CRK1

I looked up online and the test your GP selected is apparently not the correct one. Here is a useful link

hopkinsmedicine.org/health/...

The correct test is IFAB.

Painttube profile image
Painttube in reply to CRK1

Thank you Yes I found similar information. I’m looking into getting a private blood test done.

CRK1 profile image
CRK1

Maybe you could suggest to the GP that the lab did the wrong test? That is it was not the GP's error but a lab error? Might give the GP the out to change their mind and do the right test. Seems crazy you have to pay for the test.

Painttube profile image
Painttube in reply to CRK1

Unfortunately it’s not the first error that the GP surgery has made so I’m rather losing faith!

Bellabab profile image
Bellabab

Its not straightforward or easy. This book tells us why and I would it very helpful & read it several times.

hammersmithbooks.co.uk/prod...

Painttube profile image
Painttube in reply to Bellabab

Thank you it looks useful. I haven’t been diagnosed yet so PA may not be the cause of the symptoms.

Bellabab profile image
Bellabab in reply to Painttube

Doesn't matter the book covers all causes.

Painttube profile image
Painttube in reply to Bellabab

Yes thanks. I’ve been reading the first chapter 😊🙏

WIZARD6787 profile image
WIZARD6787

Good on ya'll for discovering that the test was not the correct test for IF. Send a bill to NHS🙂

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