Intrinsic factor test and diagnosis

[JSD100]

Hi guys,

I'm new to the forum. Basically I've had all of the standard pernicious anaemia symptoms for about 2.5 years now, but not yet 'officially' diagnosed. I had been diagnosed with chronic fatigue syndrome, but rest didn't seem to help.

3 weeks or so ago I discovered pernicious anaemia and took a private test via superdrug. They sent me a vile and I took some blood and returned it to their lab.

The result was that I was positive for intrinsic factor antibodies. They said I prob had PA.

I then arranged a test via my GP, but that result came back negative. the Dr then said I don't have PA and it prob is chronic fatigue syndrome.

What do you guys think I should do next?

Any help would be appreciated as I now don't know what to think and my symptoms are pretty bad now.

[Nackapan]

What was your serum b12 level folate iron vit d ect ? I've not had an intrinsic factor blood test.

I was prescribed b12 injections because of the b12 level and symptoms .

Annoying 2 tests with different results

I've also been labelled with chronic fatigue/me . That is a symptom though not a diagnosis .

I had very different symptoms before.

[JSD100 in reply to Nackapan]

Hi there. And thanks for replying.

My B12 levels came out as 88 pmol/L. Folate levels were normal, but then I do eat a lot of broccoli.

I have heard though that the B12 level test is not that accurate.

My red blood cells were normal.

[Confused01 in reply to JSD100]

Hi,I just wanted to point out that with Chronic fatigue Syndrome rest/sleep does not improve any of what the condition causes. That’s just the problem otherwise we’d all nap and be fine..if only.

Wanted to be sure you are aware. Dr’s often have no idea and say ‘get some rest and you’ll be fine’.

I often feel it’s a bucket diagnosis (diagnosed and suffer badly and it’s debilitating )….interestingly Long Covid is almost identical it seems. I’ve been tested for hundreds of things. What and how much I do definitely causes the symptoms it seems.

I looked into PB and got nowhere with gp. Folate keeps dropping low post top up meds.

PB seems to be something many drs shy away from..quite possibly as low knowledge about in many cases.

X

[wedgewood]

The intrinsic Factor Antibody test is very unreliable . Sometimes the antibodies show up in Pernicious Anaemia patients , sometimes they do not , and your doctor should know this fact . As they have shown up once , means that you have P.A. . A negative test does NOT rule out Pernicious Anaemia. Your symptoms should be treated with some B12 injections ( they are very cheap)

Pernicious Anaemia needs to be treated with B12 injections FOR LIFE . Best wishes .

[JSD100 in reply to wedgewood]

So is 1 positive IF test enough to be diagnostic then, regardless of a negative second test?

[wedgewood in reply to JSD100]

YES! For some reason , which we do not understand, these Intrinsic Factor Antibodies appear and disappear in Pernicious Anaemia patients . That’s what is such a tragedy for P.A. patients whose first test gives a negative result .A negative result is NOT proof that a patient doesn’t have P.A. especially if B12 deficiency symptoms are demonstrated .

A positive IFAB test is proof of P.A. P.A. is incurable and treatment is FOR LIFE . Sometimes patients have to have several tests before they show up , but most GPs just want to believe a first negative test and won’t perform further tests . Treatment should be firstly loading doses of injected B12 , then injections often enough to keep symptoms at bay . If treatment is insufficient or delayed , then irreversible symptoms remain .

Undertreated / untreated patients will have health that is below par, therefore susceptible to other health problems .

Our tragedy is that the Medical profession has poor knowledge of P.A. , and doesn’t seem to want to learn about it either . I leave you to ponder why this is .

[JSD100 in reply to wedgewood]

Thanks for your info. Its much appreciated. Now I just have to convince my GP to do something.

[fbirder in reply to JSD100]

What was the range for the B12 test? A lot of these companies test for Active B12 and the range for that is a lot lower than the serum B12 test.

If your 88 pmol/L was a serum B12 test than that is very low. However, if it was an Active B12 test then it is quite high.

Some testing methods for IF antibodies can give false positives in the presence of high levels of B12. These methods were replaced over 10 years ago. But I wouldn't be surprised if a private company was using an old (cheap) test.