How valid Is the test for pernicious anemia?

[jersey-jazz]

Perhaps I am beating a did horse. After having been told by both an oncologist and a neurologist that I should be getting weekly B12 shots, my GP has okayed loading doses twice and then, twice put me on monthly doses. Is it worth to insisting on having the test after receiving a B12 shot two weeks before or should I just repeat what the oncologist and the neurologist recommended?

[Gambit62 Administrator]

On one level it is worth knowing for sure if you have PA as that brings an increased risk of NETS (precancerous cells in the gut - think it is related to the higher levels of gastrin associated with PA). However, the current IFAB test isn't very sensitive - it rarely gives a false positive but it does give false negatives. That means its a good test to confirm PA as the cause of a B12 deficiency but can't be used to rule out PA as the cause of a B12 deficiency. You may have to try several times to get a positive.

Personally I'd go with the oncologist and neurologist and may be speak to the oncologist about potential monitoring for NETS.

There is work being done on an alternative test for PA measuring gastrin levels - but I don't know how far that has got - some countries/doctors do seem to be using it but it is certainly a long way from wide recognition in the UK

[Ratherbewalking in reply to Gambit62]

Gambit 62, could you please tell us more about the alternative test for PA measuring gastrin levels and who is developing it? Also, which countries or doctors are using it?

Thanks!

[Gambit62 Administrator in reply to Ratherbewalking]

I am not sure where the test is being developed - a couple of years ago at the PAS conference someone did a presentation on gastrin and its profile in PA but I don't know where things are now - there have been a few on the forum that have mentioned their doctors using it but I can't remember precisely what countries though I think one was in the USA

[Hidden in reply to Gambit62]

My sister in law has NETS. I have had an IF Test, but was negative. I'm allowed to inject monthly as neurological symptoms. I doubt Gp will do IF Test again, can I get one privately and if so will I need to stop b12 treatment? Thanks

[Gambit62 Administrator in reply to Hidden]

you can get it done privately but not sure of the details - St Thomas in London will do it - think medichecks may do it now. How long you need to stop injections varies depending on the exact test methodology - 48 hours is the shortest time but it can be as much as 10-14 days. Be aware though that your GP may not be willing to accept the result of a private test.

[wedgewood in reply to Hidden]

You can get Gastrin tests at all Spire private hospitals .

[Nackapan]

I would repeat what was recommended by your specialists. It was a neurologists request to up and continue my treatment.

That was ignored for sometime by GPS

.

Then it was sanctioned and neurologists request letter used to cover their backs !

As gir IFA test.

I've not had one.

My worry would be if negative used to stop treatment.

Wish it had been done before initial loading doses given.

We all know a negative doesnt rule out PA but strangely GPS don't seem to know.

Too many times I read its done or repeated if positive even ??

People put on oral tablets.

Then getting ill.

Main thing is getting thr treatment to get as well as you can.

Then if possible find the cause/ reason

[jersey-jazz in reply to Nackapan]

Thank you for your response, full of information. I have an appointment with the GP on Monday. If things do not o well, I will be changing to another GP. My life is too short for all this stress and confrontation with a GP whose ego get in his way of caring for his patients.

[jersey-jazz]

Things did not go well on Monday. The GP wanted me to submit a document showing that there were no side effects of weekly B12 shots. I actually began to look for a document like that. Then, I came to my senses, realizing that that is the doctor's job, not the patient's. Further, being a metastatic breast cancer patient, I have enough stress in my life and don't need my G P to contribute to it. He is now in my rear view mirror. I have an appointment with a recommended GP on Friday. Thank you for your help and support.