How do you know if you have PA - Pernicious Anaemi...

Pernicious Anaemia Society

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How do you know if you have PA

Sparklingsunshine profile image

Hi

I know this sounds obvious but I don't ever remember being tested specifically for PA. I've always struggled with B12 levels since childhood and had to have injections back then, during my teens and twenties it didn't continue and it wasn't until I had my bloods tested again as I was feeling rubbish that the very low B12 got flagged up.

I did try very high strength B12 tablets under GP supervision but they made no impact at all so I stated on the jabs, loading doses then a 3 monthly jab ever since. Its been several years.

Did my GP just assume its PA or not bother testing as the treatment is the same and is it something I should push for or will they not bother now. I know there are specific tests they do but I don't remember if they did them.

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Sparklingsunshine profile image
Sparklingsunshine
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11 Replies

You could ask the practice for copies of all blood tests then if your unsure post them here and the members will advise,they’re a great bunch.best of luck.

wedgewood profile image
wedgewood in reply to

If you eat all the foods containing B12 -meat , fish , dairy , if you don’t suffer with Helicobacter Pylori, if you haven’t had stomach surgery , if you don’t have fish tape - worm, if you don’t take PPIs , or any other drugs that interfere with B12 absorption ( and there are quite a few ,) and you don’t absorb B12 from oral supplements , then it can be assumed that you have Pernicious Anaemia if you have low B12 blood serum . It is, after all , the most common form of B12 deficiency.The test for P.A. is the Intrinsic Factor Antibody test .( IFAB) BUT about 50% of P.A. patients test negative to it . Apparently these antibodies appear and disappear in the blood of P.A. patients . So little research had been done on P.A. / B12 deficiency. PAS is trying to rectify that .

Sparklingsunshine profile image
Sparklingsunshine in reply towedgewood

HiI'm a lifelong vegetarian from childhood, no stomach surgery or drugs that I take. I do have allergies/asthma so have autoimmune issues there. I know the treatment is the same, ie injections but I've always been curious about mine. I've tried supplementing B12 via tablets but it's never worked for me.

Nackapan profile image
Nackapan

I've never had the IFAB test. Dud have parietal cell test and that was negative.

Then assumed dietary???

It isn't as same mixed diet I've sweats had

So j assume IFAB neg PA

I certainly cdnt absorb from oral b12 or if I do irs not enough.

If you are symptomatic before b12 injection j suggest you trial 2 monthly.

I don't know tge science but j think once on injections if not dietary yih need them for life whatever the reason.

The longest I've been in 3 yesrs was 5 weeks without an j hectikn after initial loading .

I had yo ho back on evefhbotgef dsy to get walking.

Yoh know your body

.

Sleepybunny profile image
Sleepybunny

Hi,

There are many causes of B12 deficiency besides PA.

I have read that PA is the most common cause of B12 deficiency in UK .

Do you have any of the risk factors listed below?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

What's the difference between PA and B12 deficiency?

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

Have you had any of the tests mentioned in link above

Intrinsic Factor Antibody test (IFA or IFAb)?

Parietal Cell Antibody test (PCA)?

Gastrin test?

PA is sometimes confirmed by a gastro enterologist.

Have you been referred to a gastro specialist?

"but I don't remember if they did them."

You have the right to access your medical records.

GPs can only refuse if they think it could cause harm to you or someone else.

You can register for online access to your records. Search your GP website for Online Access/Patient Access or Emis Access.

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...

My understanding is that you can also request access to your paper records.

I think it's best to put access requests in writing as harder to ignore. Keep copies of requests.

Sparklingsunshine profile image
Sparklingsunshine in reply toSleepybunny

Hi no I've never seen either a gastric specialist or haematologist. I do have access to records but I can't access old ones. My surgery allows online access for a few months back only it seems.

Sleepybunny profile image
Sleepybunny in reply toSparklingsunshine

"but I can't access old ones"

Medical records are kept for varying mounts of time. See link below.

Retention of UK medical records

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

"My surgery allows online access for a few months back only"

That sounds rather strange to me.

Might be worth speaking to practice manager asking how to access medical records online that are older than few months. There will be a policy section on your GP surgery website...maybe something helpful in there.

You could try a written request to GP surgery asking for copies of blood test results for a particular time period even if it's a few years back.

You can try requesting access to your paper records.

Sparklingsunshine profile image
Sparklingsunshine in reply toSleepybunny

Hi

I'm adopted so unfortunately don't know my family history.

Mividauk2 profile image
Mividauk2 in reply toSparklingsunshine

I can help here, I don't know my biological family, I took dna tests to find out about my origins, through lots of research of relatives I discovered my whole tree is full of endogamy (they married between cousins ) totally worthy to take dna tests.

FlipperTD profile image
FlipperTD

Scientist, not medic.

How do you know if you've got PA? Well, once upon a time [here he goes again] we had the Schilling Tests. These involved the patient swallowing capsules of radioactively labelled B12, and then measuring how much came out in your urine. When performed using intrinsic factor [IF] bound to radiolabelled B12, then that gave us the opportunity to calculate the ratio of 'bound to unbound'. If you absorbed much more of the bound fraction then that was interpreted as PA, because the IF had facilitated the absorption.

Then along came Mad Cow Disease, and all of a sudden the idea of dosing folks with slaughterhouse-sourced IF was seen as a bad idea due to the potential risk, however small.

By this time we had developed tests for IF antibodies, and whilst these are common in PA, they are by no means universal. Only about 50% of PA cases have them.

PA typically has an auto-immune basis, and other auto-antibodies can be seen, but they're nowhere near as specific as IFAb, so the presence of other auto-antibodies is suggestive but not diagnostic.

In the 'early days' of PA, before we knew about B12 [we referred to it as 'extrinsic factor'] then it was termed 'Pernicious' because it tended to kill the patient within about two years or so. [This was as recent as a hundred years ago.]

PA is one cause of B12 deficiency, but there are other causes. If the other potential causes have been eliminated, then it's probably PA. Sorry I can't be more specific!

wedgewood profile image
wedgewood in reply toFlipperTD

Thanks very much for that explanation . It’s really useful . 👍

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