Pernicious Anaemia Test

After diagnosis of low B12 at 147 last year, I was given loading doses and told to expect a PA test. This came back negative, which was a surprise. I had all the symptoms. Tinnitus cleared up, along with heart palpitations, breathlessness, brain fog etc, all that I had previously put down to menopause, I am 52. Is there a more accurate test, as it appears from comments on here that unless you are officially diagnosed with PA, treatment will be removed. Can I get a test privately that the GP would accept? Schillings test? I thought that PA should really be diagnosed on physical symptoms given that the test does not appear to be very accurate in a lot of cases. Thanks .

[Hidden]

Good morning Teresa I’m having an intrinsic factor test done next week and medichecks told me to stop any b12 supplementation two weeks before testing so if you’ve recently had loading doses that may have skewed your results ,these gps should be aware of of this.are you able to stop your b12 and maybe get retested?

I use medichecks for private blood tests as I can arrange a nurse locally to do the blood draw I can’t do the finger prick tests and they’re not suitable for everything anyway.have a look on their website they’re very good.

They cover a lot of stuff that nhs don’t or won’t do.x

[Hidden in reply to Hidden]

Thank you. I will look on medichecks website, although my last PA came back negative, I am tempted to try again.

[wedgewood in reply to Hidden]

I believe that our Chairman , Martyn Hooper had to have three IFAB tests before one came up positive . Doctors should know that about 50 % of negative tests appear for patients with P.A. Yes , symptoms should be treated .

[Hidden in reply to wedgewood]

I doubt my gp will give 3 tests. Thanks for info

[fbirder in reply to Hidden]

Very high levels of B12 in the blood can interfere with an IF antibody test, but it makes it more likely to produce a false positive result.

[Hidden in reply to fbirder]

So in your opinion would I be better to postpone it or try use it as back up with gp if it does come back false negative ,I’m convinced I have P.A. because of a few bouts of HPylori and because my mma test was elevated,endo diagnosed functional b12.I struggle to get beyond 2 days of no injections with quick return of symtoms.ive did around 30 s.i now but stopped to have this IF test done.

I’m a bit out of my depth with this again but desperately want an accurate diagnosis from medics,many thanks.

[spacey1]

The IF test is notoriously unreliable and gives a lot of false negatives. I understand a positive result is a reliable indicator of PA, but a negative could mean PA or not! Sadly there isn't a better test, and the Schilling test isn't performed any more.

If you respond to b12 and it's not an issue with your diet, they are supposed to call it a form of PA anyway, but that hasn't been my experience

[Hidden in reply to spacey1]

Thank you. I have an extremely healthy diet and took supplements. All my symptoms pointed to PA, even my Gastro consultant thought I had it... just feel more confident to see it written in black and white so that GP's cannot question the results. Oh well, I will self diagnose myself as confirmed PA!

[FlipperTD in reply to spacey1]

Scientist's answer follows:

The Intrinsic factor Antibody [IFAb] test is NOT notoriously unreliable. It does NOT give lots of false negatives either! It's not specifically a test for PA; it's a test for IFAb. If it was an unreliable test then it would not be in use. When it's negative then that simply means that IF antibodies have not been detected on that occasion, in that sample. It doesn't mean that they won't ever develop. In many auto-immune conditions, the levels of auto-antibodies may vary considerably, and sometimes it may take several attempts over an extended period before any antibody level reaches a point at which it can be detected by a diagnostic procedure. Some patients may never develop detectable IF antibodies but it doesn't stop them having Pernicious Anaemia.

The Schilling Test [more appropriately 'Tests', as there were several parts to it] was very useful, but even then, not infallible. It was not a simple procedure, took a considerable amount of time, and at very considerable expense. It was not suitable for large-scale testing. The IFAb test is however a straightforward test to perform. The fact that it's not a 'One Stop Shop' type of test leading to diagnosis doesn't detract from its value, but diagnosis of PA should be a clinical procedure, and take account of a number of things. A positive IFAb test helps a great deal, but in PA, it's only positive something like 50% of the time.

The other 50% of results are NOT wrong. They're simply negative.

[Hidden in reply to FlipperTD]

Great information, makes sense. Thank you!

[Milley2 in reply to Hidden]

I’m similar to you

Went low at 124 b12 in June this year

Parential cell negative

Intrinsic negative

I also was positive for h pylori

That has now gone from me through triple therapy meds vile

I still remained unwell

Bern I. And out hospital 8 times

Endoscopy showed h pylori gone

But mild gastritis mild

They gave ppi meds omg was awFull

Had to stop

Go in mean time told me to stop b12 as my level high

It would be high as I was injecting alternative days

I haven’t injected 2 weeks

I’ve lost over a stone

Unable to eat although the symtoms I felt are b12

It mimics gastritis as well

Today I’ve injected to see

As I’m unable to sleep

Nauseaus

Weight loss

Ear ringing

No appetite

Tearfull

So thin now

Burning arms

Weakness

The lot is back

The 2 are similar

I fir sure think the hpylori did my gastritis and low b12

She made me stop I got even worse

So am SI again today as petrified I’ll loose even more weight

[wedgewood in reply to FlipperTD]

Thank you so much for that lucid explanation . It’s just tragic that doctors don’t see it that way . I want to print out your explanation and send it to every GP and Haematologist in the U.K. ! Why is this not taught in medical school I wonder? . Negative IFAB tests in patients with Pernicious Anaemia have caused and still cause so much misery, ill-health and despair .

Thank you very very much .FlipperTD

[Ronsville2 in reply to wedgewood]

Very much my thoughts too. I feel strongly that the whole business of B12 deficiency and PA should be investigated. The government should be taking this on board and ensure clear Guidelines and Standards are implemented Nationally.

[Hidden]

Ha ha, I have many hats... do you self inject? I started about weeks ago and really feeling much better now, will probably continue monthly. Just trying to arrange who/where to get my sharps bin collected. It appears local council want a letter from my GP. I am trying to contact local needle exchange places, although finding them unhelpful so far!

[fbirder]

My heamatologist told me I didn't have PA because I hadn't had an IF AB test. Not that I'd had a negative result, he ruled it out because I hadn't had the test!

So I asked him to explain why I had - undetectable levels of B12, gastric parietal cell antibodies, gastritis restricted to the corpus and fundus, and metaplasia of the gastric mucosa. He conceded that I probably did have PA.

The recommendations from the British Committee for Standards in Haematology are that people with symptoms of a deficiency (and a positive response to B12 injections) that test negative for IF antibodies should be diagnosed as having AbNeg PA. onlinelibrary.wiley.com/doi... (See Fig. 1)

[Hidden]

Thank you 👩‍🌾...I asked one chemist they said no. I just checked council website and filled in their form, so waiting for response.

[Sleepybunny]

Hi,

I wrote very detailed replies on another forum thread which you might find useful.

It has info on PA tests.

healthunlocked.com/pasoc/po...

I am not medically trained.