How were most of you diagnosed? Wondering how it is confirmed with such unreliable tests

[CW12]

With the antibody test being so unreliable. How is Pernicios anemia usually diagnosed? Is it usually an endoscope? Wondering how they can absolutely confirm it with such unreliable tests?

Thank you!

[Nackapan]

I believe if you test positive on the intrinsic factor test it is reliable as long as long a few weeks after an injection.

Plenty of false negatives though.

I had the parietal cell antibody test and it was negative. 20% of thone getting a negative could have PA

I think I have that right. I'm sure someone will correct me if wrong.

Some people get a clinical diagnosis on symptoms.

An endoscopy will give a diagnosis of caeliac disease.

Not sure about PA.

[clivealive Forum Support]

I guess I was "fortunate" that I was given the "Schilling Test" and even then I had to have two - one in 1968 and another in 1972 before I got the P.A. diagnosis.

As best I can remember now after more than 50 years I was given a massive injection of B12 and also had to drink a glass of radioactive B12 and my urine was measured over a period of time. The first test was obviously inconclusive and when my then doctor sent me for another four years later the same technician as before dealt with me and said that no-one has two Schilling tests - I said I Do and did.

[Suzibelle]

I was diagnosed by symptoms and family history (my father had PA). I had an IFAB test and it came back negative but with notation along the lines of 'only negative in the ABSENCE of symptoms' so as I had symptoms the doc put me on B12 injections straight away. Reading a lot of the stuff on here I know I was lucky.

[Gambit62 Administrator]

There is quite an extensive protocol for diagnosing B12 absorption problems in the BCHS standards which includes IFAB-negative PA in recognition of the high risk of a false negative on the IFA test

onlinelibrary.wiley.com/doi...

[fbirder]

My idiot haematologist told me that I didn't have PA because I hadn't had an IFAB test. Not that I'd had a negative result, but solely on the basis that I hadn't had the test,

I asked him what his explanation was for - an undetectable level of B12, anti-gastric parietal cell antibodies, and metaplastic gastric atrophy restricted to the corpus and fundus of the stomach.

He conceded that I probably do have PA.

[041051]

I was a blood donor and I went to give blood after a break because I was pregnant in 1976 and I was told that they couldn't take it and I needed to see my doctor. He referred me to the hospital where they had lost the blood test results. My G.P. had asked me to see him after I had been to the hospital and when I told him I wasn't being treated for anything because they had lost the referral and the results, he picked up the phone, and whoever he was speaking to I have never forgotten what he said " if she's not seen within a week she'll be dead". A bit dramatic possibly but I was seen and given the Schilling test. A few years ago I moved to a new practice and at my initial nurse check up she asked me if I really had pernicious anaemia. She decided to check and took some bloods and it was never mentioned again so I guess I really do have it

[Sleepybunny in reply to 041051]

A GP who really stood up for his patient ; makes me feel wistful.

[041051 in reply to Sleepybunny]

I wish I had a G.P. like that now. Things were a lot different back then.

[Coachlady11]

I had been going to GP with various problems for a while and was eventually diagnosed with depression and put on anti depressants.

On a dentist visit the dentist noticed how the sides of my mouth were all cracked and mentioned it being a symptom of anaemia but I took no notice.

A chance encounter with a relative put me onto PA so back to the doctors I went and I asked specifically to be tested. A couple of days after the test I was called in for loading doses and about a week later was called in and told my IFAB was positive and i did have PA.

I remember feeling a huge sense of relief as I’d felt like a hypochondriac

I’m off the anti depressants now but I have to self inject as GP won’t budge from 12 weekly but I feel almost normal again - whatever normal is lol

[Hidden in reply to Coachlady11]

I didn't know cracked mouth was a sign for PA.

Mother had it.

[Coachlady11 in reply to Hidden]

Nor me

I’d had it for years and just used Vaseline or lip balm but not had it at all since injections started

I’m not medically trained and I’m not saying it is a symptom - just relating my own story xx

[Hidden in reply to Coachlady11]

I trust what other patients say far more than what I read online!

Thank you for sharing.

[psawant in reply to Coachlady11]

How often do you self inject

[Coachlady11 in reply to psawant]

It depends how I’m feeling

I recently started running so I inject twice a week but before that it was once a week

As you can see every 12 weeks just doesn’t work for me!

[CW12 in reply to Coachlady11]

How long have you had low b12?

[Hidden]

Going back to the OT, "no wonder...!"

Useful to have a list of doctors, who "understand" all this.

GPs don't except few/some GPs who understood and cared,

and hounded by the GMC.

[Buttercup1283]

Not had b12 injections yet and had test for inter... what ever it’s called factor and my results were 0.8 the normal range is 0-8.5 apparently. I have no understanding of the results as I can’t find anything with numbers, people are just saying positive and negative on their tests

[TariTraveller]

Hello, I was diagnosed after being given a Schilling test 20 years ago. I had symptoms for years and at one visit my primary doctor was out on extended leave, the substitute doctor ordered the Schilling test and it changed my life.