Diagnosing PA

[Siouxiesue]

Can an enlightened soul out there tell me why doctors are only interested in using a positive antibody test for intrinsic factor to diagnose PA, when its false negative rate is something like 40-60%? Whereas a positive antibody test for parietal cell antibodies is around 80% accurate?

[holehead]

Hi

I would love to know what the majority of Gps know about PA and B12 deficiency as there appears to be as many different diagnosis as there are people in this country. Why is good practice issued when most ignore it😨

You know if I was mentally unstable which my wife has eluded to then I would say there is a conspiracy theory going on here long live self injection, it does my depression the world of good

Mark

[fbirder in reply to holehead]

The reason that most doctors don't know a lot about PA is because they spend very little time studying it as a student. They spend one day covering all of the vitamin deficiencies, most of which have much cooler names (scurvy, pellagra, beri-beri).

Like people on this forum (who I would expect to know more than the average GP) they often pick up strange ideas, like B12 being dangerous at high levels, or being addictive.

I tried to play my part in rectifying this - by giving a (signed) copy of Martyn Hoopers book to my GP. He then passed it round the rest of the practice doctors. I hope it may have helped a few others.

[Bengie in reply to fbirder]

As I found out it's not a bright idea to ask doctors what they know about PA but I agree with you that they don't know much and don't care how you suffer. What's the name of that book please as I'm afraid to leave this page to google it in case I can't find here again. Thank you.

[fbirder in reply to Bengie]

The book is

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency By Martyn Hooper

amazon.co.uk/d/cka/What-Nee...

[Bengie in reply to fbirder]

Thank you so much. I have just gone into Amazon UK. This PAS is a great site with such helpful people. It gives me some hope when doctors don't? Thank you, thank you.

[CCSP-27 in reply to fbirder]

Ooh now there’s a good idea ! A copy of the bible that is Martin Hooper given to GP 👍 Yes, if it helps others I’ll do the same.

[Siouxiesue]

Thank you Eaoz. I appreciate the detail.

[Sleepybunny]

Hi,

"why doctors are only interested in using a positive antibody test for intrinsic factor to diagnose PA"

Possibly because some are unaware that there is such a thing as "Antibody Negative Pernicious Anaemia"

Antibody Negative PA is mentioned in the "BSH Cobalamin and Folate Guidelines".

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

stichtingb12tekort.nl/weten...

[fbirder]

A very good point about how one needs to combine knowledge of the rates of false positives with the rates of incidence..

It's one reason why the old test for prostate cancer is no longer recommended. If you tested positive then it was slightly more likely that you didn't have the cancer. It meant a lot of men were put through needless angst and surgical treatments with unpleasant side-effects while a small number of men had their cancers fixed. There's a good book about the whole thing - Overdiagnosed by Welch, Schwartz and somebody else.

[fbirder]

I've often said that doctors should use a range of tests to diagnose PA. they should look for all of -

A low serum B12

High serum MMA and/or hCys

Positive IF antibodies

Positive GPC antibodies

Metaplastic gastric atrophy (via endoscopy)

And if a patient tests positive for three or more then PA is the most likely answer. How likely depends on which three, or more.

[Debbiscott16]

I was diagnosed with PA in January and have had 3 B 12 injections

I had a B12 blood test and I rang to see if it was back and to ask for a copy for the Neurologist who I am seeing in September , but the receptionist told me it was normal and no further action was required!!

I think it may have been cleared by a Doctor who is unclear on Interpretation of B12 B/Tests?