Struggling trying to get IF test done.

I arranged to have the intrinsic factor test done on the 21st via nurse and medichecks.

They advised me to stop the supplements two weeks before so I had my last injection on Tuesday past,I’m really suffering bad feet and legs pain and burning again staggering again feel itchy all over my shoulders, ears feel so tight inside,I’m shallow breathing again and stress levels are climbing ,the ratty cow is rearing her head again lol.I hate feeling like this,is it really worth it to get this stupid test done? Any thoughts please x

[FlipperTD]

I'm assuming you are in the UK and have access to the NHS.

Your local hospital may not perform IFAb tests themselves, but should have access to other NHS laboratories that do this test. [I worked in a laboratory that did this, and we did quite a few 'referred in' IFAb tests]. Your GP should be able to help, if it's deemed to be a clinically valid request. I don't see whay you should be faced with having to pay for the test yourself.

Good luck.

[Hidden in reply to FlipperTD]

Good morning flipperTD so pleased you responded I do enjoy your posts so thank you.

I had a private endo who requested numerous tests via gp and nhs as he looked at my previous bloods and said functional b12 deficiency,I also needed a pituatory test due to previous head injury and my cortisol saliva tests were dire apparently so he asked for am cortisol testing too,all were refused by gp citing lockdown,he did agree to loading b12 injections and then a three monthly one,I’ve had to self inject every three day which did help with a lot of symptoms and increased severity of feet and leg burning which apparently is to be expected at first,even although I told the nurses I couldn’t get past two days without a return of the worst symtoms mainly dizziness which had resulted in previous nasty falls incl brain injury,they ignored and said once you’ve finished the loading doses you’ll feel better,I didn’t so went down the self injecting path,I’ve did around 30 now and decided to pay and have as many things checked as I could to see how things were progressing on my new supplementing with folate d3 etc,I’m having a full well woman check if 47 things done on 21st so decided I may as well do the I.F test and the cortisol 24 hour urine test then the plan was go back to gp to try and discuss moving forward.thanks so much again and sorry about the essay.

[Nackapan]

I thought you didnt have to be off supplements for 2 weeks now S test improved.

I would double check if you getting ill.

Surely a week would be long enough??

I personally havent had this test either. I think if you've got this far have it done. The only thing csn happen is if tok close I'm sure ivd read on here it could be a false positive ?? But I think that was with an older test.

Others will know.

I was given the parietal cell antybody test . That was negative but not supposed to be used now??

It seems if IFAB comes back positive its accurate .

It would be so much better with a reliable test. I still havent reasons . So u understand you perusing it. Labels can be very useful.

[Hidden in reply to Nackapan]

Good morning Nackapan I know your right but I’m finding it so hard to last it out,it was medichecks who said stop supplementing for two weeks so I have around 9 days left now till blood draw and I have to admit I’m struggling.x

[Hidden]

Not much point...The Intrinsic factor Antibody [IFAb] test is NOTnotoriously 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 Hidden]

Thank you, ive chickened out today and did my injection I was back to staggering again and so many symptoms,I woke up last night and my whole of left side of arm and shoulder felt like it had seized up I may just have been lying funny but it still scared me enough to decide to do my injection.

I’ll just go ahead and get the I.F blood test done next week I’ve paid for it so you never know I might be lucky and get the answer I want to help me get that diagnosis but I’m going to continue with the injections regardless.x