Why does Intrinsic factor test result change?
Does anybody know what makes the abs come and go? I had negative then + result then negative again the day after B12 injection. I was expecting a + result after reading forum posts about high B12 causing false positive IFAB. I'm so confused, I have anti parietal abs and hashis + many symptoms of deficiency but struggling with getting diagnosis
I don't know! It beats me!
Some top Dr's and the lab information for at least one of the labs that run the tests both suggested to me that injecting "too close" to a test would throw up false positives.
Thank you for the additional insight!
Are you SI or did your Dr give in and treat you once you had one positive result? Are you still fighting for treatment?
Curious as to why a third test was done?
I'm sorry it's all such a pain for you.
Thanks deniseinmelden,I was treated after the positive result by GP then abruptly stopped again saying he needed specialist advice from gastro. Gastro said my + result was only weekly positive that test should be repeated until 2 further positive IFAB results are obtained
....the specialist has recommended that I get injections every 2 months but states there is not enough evidence to confirm PA. Since the recommendation is for the same treatment as I would have receved with confirmed PA, its just academic but still hard to understand.
I was told that too.Treatment the same.
I didn't even get an Intrinsic antibody test!
I had a parietal cell antibody test that was negative.
At the time didn't know not used as a diagnostic tool for PA .
That result prompted a dietary b12 problem.
It wasn't!!
I was put on b12 tablets by gp but I between b12 Injections.
I'd previously trued sprays ect on z t week gap after loading doses.
They did nothing.
So then told Injections for life as yiur body gets used to the 'overide'
And needs high levels.
My regime recently disputed .
Neurologist ( random) santikned 2 weekly on prescription still.
You have other autoimmune conditions.
They often are not alone.
So believe the 'positive ' test
I agree very confusing especially as the medics are too.
Keep a diary of symptoms.
A clinical diagnosis should add to your positive IFA test !!
Goodness knows why they are so nuts about something that's safe and yet they'll doll out painkillers, omeprazole, antidepressants and all sorts with known bad effects, like they're sweets!
Very frustrating!
At least if you've had some jabs and know you don't react badly you can SI and get well, it would just be good if they could be taught to know what they are talking about. Hey ho!
rockerfeller started the world off on these terrible drugs eg anti depressents etc, he got rid of the holistic approach chased them out of town, now you have all these big pharma companies who are killing the world with terrible drugs. its all about money and greed. they have control of the nhs and the doctors. the doctors keep getting paid so they are not going to rock the boat.
Too true. Like your asking for hard drugs. I have stopped the idiocy with trying to convince people( GP’s and the like) and manage myself. I have made a Medical history on my iPhone where I note down everything so in the event I get sick, the medical staff can read my history. I make notes of injection frequency, results of regular privately done blood tests and MRI/ CT scans etc. I even noted down the reasons why I decided to manage myself this way. It has made life a lot less stressful. ( more costly mind, lucky I can afford.)
It's a really good idea.
I've got my meds saved in my phone too.
When the Drs ask what meds I'm taking I just lump all my "vitamins and minerals" together and they lose interest! I think some of them would have kittens if they knew how much, especially B12 and methylfolate... That's if they've even heard of methylfolate!
I need what would normally be a lethal amount of most things every day and the only people I've confessed to how much I actually take is the GI team at Addenbrooke's. They didn't bat an eyelid and, having checked me out, suggested that I took still more potassium and magnesium - and I've been significantly better since!
And that's all in addition to a high-nutrient diet.
There's definitely no placebo effect with taking all that - more a nocebo effect of knowing that what I'm taking ought to be deadly!! At times I worry how my kidneys will cope, etc, but I think it's just a case of most things going straight through me and never getting into my body at all.
I've never heard that. Keep a print of your positive test. Antibodies tests can only record what's there on the day if the test.
It should then be recognised.
What acwaste of lab time and money !!
Yes, exactly! x
Hi AumshantiiI know the test isn’t accurate and people often get a false negative. I believe you can also get a false positive but the likelihood is far lower to the point where a negative doesn’t prove anything but a positive means you probably have PA. I am curious though as to how you got tested three days in a row. Are you in the UK?
Thanks gaudygoat, yes I'm in the UK , the tests wers done months apart, not 3 days in a row sorry for any confusion.
I was going to pay for private test and asked Medichecks a private testing company if it was necessary to repeat IFAB test, they even said no, if its +, no need to repeat. They lost my custom in doing that but acted honourably. Sent their reply to gastro but it was ignored.
Makes no sense why they are reluctant to diagnose PA yet recommend treatment as if it is PA ...and they keep repeating I am likely to develop PA. Is there a secret agenda they have to follow and why? I cannot understand why these learned people are so anti PA. Is a B12 injection every 2 months more expensive than the anti depressants, pain kellers and other stuff they prescribe instead perhaps? On this forum we are more willing to question what we are told but I feel sad and angry for the poor souls who are fobbed off and just accept what the Dr says who just go away and suffer for years and probably end up costing way more to the NHS as significant and irreversible damage is caused as a result.
Hi … just as you are mentioning the cost of b12 .. my doctors actually give me a prescription which I have to pay for, collect and take with me to the surgery do officially it does not cost them.. yet they still won’t give any more than 2 monthly
I do not understand why some surgeries charge for b12 and some dont ...... I have never ever been charged .....
Well, I don't think your Gastro really knows as much about the IFAB test as he likes to claim.The methodology for the test finds it hard to distinguish between IFAB and other metabolites with similar mass. As a result the threshold for the test is set with a noise level that is aimed at ruling out confusion with other metabolites. This means that it rarely gives false positives (unless done too close to an injection (which may be where the reference to high B12 comes though I think that it isn't directly related to B12 levels). However, the threshold does mean that if you had no other metabolites - just IFAB in low numbers - the test gives a false negative.
The positive is good confirmation that you do have PA and the comments about needing two +ves because it was only just positive is just baffling.
The test is sooo notoriously insensitive that the BCSH standards actually refer to IFAB-negative PA. As you have a positive the assumption should be that you do have PA.
Thank you again for another of your clear and concise, yet detailed and knowledgeable replies.
Thank you Gambit, yes I have read that too, false positives unlikely unless done near an injaction, my positive one was done weeks before B12 treatment started. I have now dealt with 3 GPs at the practice, one hospital gastro I am now dealing with the lead Gastro who is still regurgitating the same . PA is just not sexy enough it seems for their interest.
I concur with many other replies to your post. If you've low B12 and other symptoms associated with PA Plus you've Thyroid Antibodies (Hashimoto's which correlates to 40% of people with PA also have Hash) plus you tested positive for Parietal Cell Antibodies (90% of those with PA will test positive for PCAB) Plus you've tested positive for IFAB in the past (this test has shown to only be about 50% accurate with both false positive and negative from what I've read it is so inaccurate that if tested positive then you should test for PCAB. Most doctors today just order both tests together anyway. Anyway the point is once you've been tested positive for all of these it is counterproductive to test for them again. I tested positive for PCAB and negative for IFAB and also positive for Thyroid Antibodies for Hash. Plus had every PA symptom in the book, Extremely low B12 at 70, Megaloblastic Anemia, neurologic issues, balance problems, could not walk, brain fog, AMAG, no stomach acid, stomach cancers, GIM and NEH. So if you have these or a subset of these symptoms then not being a doctor I would suggest you have PA. I've found that most every Doctor here in the U.S. do not really understand PA. Even my GI doctor after my endoscopy and discovery of Gastritis prescribed me with PPI fortunately I had already read up on PA and knowing I PCAB and probably low stomach acid I never took those. At least here doctors are just not trained in vitamins in general and "I recall" I reading they maybe get 30 minutes on B12 I just never went back to him. You may want to consider finding a new doctor.
Thanks Rexz, been with my GP 30 years, sad to end this way and from the forum seems there is no guarantee that a new GP will see different, if the hospital specialists are so clueless what hope is there for the GPs?
Hi. When I struggled finding out my health situation, I went to a naturopath. Sometimes they could run blood work that a normal doctor won't, in order to get to the problem. Plus iridiology (see body systems through eyes). Some naturopath take medical plans just for the blood work. The rest is ca$h. But at least there's an option for the route to good health. God bless🙏
Amen to that! God bless all those who are suffering and grant those who have it in them, the fortitude and perseverance to continue the good fight x.
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