Hi allJust wonder if anyone has had this complete PA test done.
It is expensive at £280.
Does it help to give me a definitive diagnosis?
( Something I'm struggling to get from my GP)
Medichecks PA test: Hi allJust wonder... - Pernicious Anaemi...
Medichecks PA test
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Hollybushroad
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No test is definitive for PA every since they got rid of the Schilling test , and that too was prone to errors 😭
But if you would get a positive IFAB result, that would be definitive though I've heard UK docs are reluctant to accept private tests. Hopefully others will chime in!!
Hi again jadeYes phoned GP surgery this morning and was told labs don't automatically test for IFABs unless serum b12 is below 200 ???(mine is 284)
(GP had previously requested they be done with b12 but they weren't)
I explained my concern re neurological symptoms but GP was clueless.
I'm so tired with all this
I've just got to the stage I want to manage my own care thus the need for clarity re diagnosis .
Oh my goodness that's crazy. You might have more luck with a specialist eg neurology, hematology, gastroenterology...
But - and i think this is what you're asking - in up to 50% of people who have PA, their IF antibodies will be negative. So if you're in the unlucky half, your antibodies will come back negative (saying no PA), but in fact you still have PA and you still need life-long injections. You could also have negative IFAB, not have PA, and have low B12 for some other reason, but there's no way to know which category you fall into.
You could very well be in the lucky half where IFAB comes back positive (=PA). But there's no way to know. So in summary, no, there is no definitive test. I hope I've now more clearly answered your question? 
I went my own way after being dismissed by the GP. I did my own tests so that I would have a baseline. It was expensive. Everything came back normal (gah!). I'm still glad I did them.
Yes that's the way I feel too. I know there's no hundred percent guarantees re tests but like yourself I just want to check all avenues possible for my own peace of mind.Surely if there was a functional deficiency even it wasn't actual PA an MMA test would give some indication???
My gut feeling is I do have PA as I have other autoimmune diseases ie sjogrens syndrome and hashimotos and also the fact my Mum had PA
Yes in theory an MMA test could show functional deficiency. If you can afford, I would say go for it. If you're doubting, I would still go for the test so that you have a baseline, but be mentally prepared that even MMA may not show deficiency yet or that it's borderline but still "normal".
The thing is, you're at the best possible time now to test. If anything comes back abnormal, then you have something to fight with. If it's normal, then you can still do your own thing but at least you've tried. If you start injecting now without testing, you'd have to stay off injections for a long, long time to get back to a baseline, and by that point - assuming injections were helping - you would absolutely not want to stop just to do a test.
However if you can't afford the testing, then hey, that's also life! You can still do your own thing and get IFAB tested in the future- and IFAB is the only test out the bunch that will actually diagnose PA. All the rest (MMA, homocysteine) will only show a deficiency, but not the cause. I hope that makes sense. Sorry if I'm rambling!
Edited to clarify: it's totally possible to test IFAB after starting injections. Ideally you want to wait 2 weeks after an injection to avoid the dreaded-but-rare false positive.
If I were you and my mother had PA, my gut feeling would also be the same!
Thank you jade.Yes I had thought about getting the single medichecks IFAB test first but probably false economy cos if it was negative I would probably want to do further MMA testing and would work out more expensive in the long run as would have to pay twice for venous blood draw if you know what I mean.
Think I will bite the bullet and just order it.
Can't put a price on your health I suppose
Thanks for all your help
Makes sense!
Good luck & please let us know how it goes.
You're very welcome.
Oh yes no doubt I will b back posting on forum when I get results to ask for interpretation and way forward.Thanks so much again for your help
Depending on symptoms get a referral to a neurologist or gastroenterologist.If symptoms bad the Gp should refer you.
They will order tests .
Family history too dictates.
Or maybe money better spent on a private consultation. .
NHS labs are good .
Doctors take more notice of inhouse testing .
Just my thoughts
Realistically the way the way the NHS is at the minute I would have to wait yrs for specialist referral while my health continues to deteriorate.My history is complicated .
I seen a neurologist approx 15 yrs ago re head tremor.
MRI showed nothing untoward. He diagnosed Spasmodic torticollis ( cervical dystonia). Can't remember what bloods were don then. He referred me to Neurophysiologist for botulinum toxin injections into my neck muscles which I have been getting every 3 months since then.
The Botox helps slightly with aching neck muscles but does nothing for the tremor. The tremor has actually got worse over past few months to the point I am very socially conscious of it. The deterioration coincides with other symptoms suggestive of B12 deficiency (although I am aware symptoms can overlap with other conditions and I do have other autoimmune diseases as well( hashimotos and sjogrens syndrome) so bit of a minefield really . I'm just really concerned that the involuntary movement may be due to b12 deficiency. Not saying it is but for peace of mind I want to pursue all avenues
Of course.As you are in 'the system' already having the injections it shoukd be easier to get seen.
Yes explore every avenue.
Personally I had alot of neurological symptoms alot affecting head and neck.
Tinnitus .
Migraines
Random electric pains over my skull
Numb patches on face
Itchy sore scalp
Skull tightness on
The list goes on but not s head tremor
Others might have experienced thus but I've not read it mentioned.
Perhaos ask at your next injection appointment you need to be seen and checked ??
Hi nackapan thanks for your reply.Unfortunately the Neurophysiologist who does my Botox injections is not in a position to advise on cause of head tremor. He explained to me on previous visits he knows every nerve and muscle in the body but can't diagnose patients as it's beyond his remit. He basically does majority of his clinics doing Botox for neurology patients and also works in theatre monitoring neurology surgery in case any interventions are needed.
I had previously asked him about getting baclofen prescribed for aching neck muscles between injections and that's when he explained his role to me. Basically I am no longer under care of an actual neurologist and I would have to go through GP again to be referred.
I live in northern Ireland and waiting lists are reportedly worse here than rest of UK. He told me approx 9 years for new referral... absolutely crazy😧 yes I've been reading myself on dystonia and b12 deficiency but little evidence of a connection ex xcept in babies
9 years !! I naively thought the clinician you see coukd refer.
My GP tested for IF. Antibodies three months after I had loading doses and before the first(completely inadequate) 3monthly shot. It came back slightly positive but enough to convince the doc.
Hi, the lab really ought to know that high IFAB can make low B12 look either normal or high in serum, so can be very misleading in PA. Cannot only test with low serum B12.
See discussion para. in link below.
'Low vitamin B12 levels can be measured as false normal or false high, especially in pernicious anemia, due to excessive amounts of anti-intrinsic factor antibodies present in the serum'
I had a Schilling Test about 1985. Positive for PA. Treated 8-weekly until 2020 when injections were stopped. Told I didn't need them and to get dietary advice. Other methods tried but none worked until I found this site and got ampoules from Germany. So I abandoned GP, self-injected and slowly recovered.
New GP says Schilling Test not in my notes so I checked. Seems that I didn't exist before 1989 (I'm 78) and all my notes are missing, hospital notes too, and the ones that are there are garbled, dates wrong, treatments I never had, including contraceptive pills (I'm very much male).
So either someone is very careless with my data or, dare I say, deliberately edited them?
That's rather scandalous 😱 bordering on malpractice?
Thus Nackapan's suggestion to frame the positive tests 😂
Not something we should have to do though! No wonder no one trusts their doctors. Glad you found your way here
I bet the 'poor old computer' gets the blame. It can't answer back in self defence!
I very much doubt it would be a deliberate action by anyone, just another example of ancient systems being updated or replaced, with no thought to what went before, or what it affects. But it's shocking.
Hi Tomdickharry
Interesting observation about the accuracy of your medical notes.
My GP recently summarised my “significant medical history” in a referral - no mention of being in intensive care after the birth of my child in 2002 due to pre-eclampsia but apparently I had a “fit” when I was 15 which my mother and I have no knowledge of. I think I am going to request a copy of my notes - it could explain a lot of dead end investigations!
Yes I have blatant errors too.errors too .
Some I've managed to remove from my notes,or at least a footnote saying incorrect data.!
I blame it on going 'paperless '
Tick boxes on a drop down list
The change over from paper to online notes a huge task .
I think they shoukd merged them gradually. 🤔
Very disconcerting .
A6 least a blatant error which will be ignored !!
Worrying
Just wondered if your GP had seen this diagnostic flowchart.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Help for GPs
1) PAS website has a page for health professionals
pernicious-anaemia-society....
2) Club B12
Group of researchers and other interested people who are looking into B12.
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
I'm not medically trained.
Thank you so for your info ...I will read over it.I'm so frustrated with the NHS system....it's truly broken
is it the intrinsic factor test? It is only 40 to 60% accurate so you may not get the desired result.. are you being treated for b12 deficiency? There are many causes of malabsorption and some people never find out their cause..
Scientist, not medic.
You're confusing terms. It's not a question of accuracy. Around 50% of patients with PA have detectable IF antibodies, the other half don't. So, it gives us an answer in 50% of cases.
That's not 'accuracy'; it's just the way things are.
It's a good, reliable, repeatable test, or we wouldn't use it.
Schilling Tests were taken as Gospel, because it was possible to demonstrate B12 absorption, and showed whether Intrinsic Factor actually made a difference.
It was a fascinating test [for us!] but it was still open to interference and technical issues, apart from the fact that we were administering radioactive B12 into folks, as well as IF purified from the slaughterhouse.
Quite how much the test cost to perform is another matter that we never even considered, but it must have been quite considerable. Likewise, it wasn't something we could perform in large numbers.
The IFAb test is much quicker to perform and much cheaper, but as I've said, it just doesn't detect everyone with PA.
Is it possible that levels of IFAB wax and wane over time, so there may be detectable levels on one test, but no detectable levels at another time? I had an appointment with an NHS endocrinologist last Autumn and we were discussing autoantibodies in general, and she said she was aware of some autoantibodies that can come and go, so their view is that identifying the damage caused by the autoantibodies is much more reliable as a diagnostic tool. She wouldn’t be drawn on whether this could also be relevant to IFAB, as she didn’t know.
As I also said it is around 50% accurate, I didn’t go into why.. I felt there was no need..
If Hollybushroad hasn’t a diagnosis or started treatment then I would advise asking for an mma and homocysteine test as these are good second line tests to determine whether a functional deficiency is present.. it won’t help with finding the cause but can help with a diagnosis..
It seems ever so important to me to appreciate what FlipperTD said.
The word "accurate" needs to be used accurately.
Simply saying it is around 50% accurate implies around 50% inaccurate. Which rather implies (wrongly) that a lot of positive results are wrong.
Remember I'm a scientist, and consequently I might seem a bit 'picky'.
We're getting bogged down in terms here, but we are probably both heading in the same direction. Accurate = "Free from Error". The test is accurate, but it doesn't find every case because some cases don't have detectable IFAb. About 50% don't. That doesn't make it inaccurate. It detects IFAb, NOT PA. PA is a clinical diagnosis, and as such relies on the input of a knowledgeable clinician. [That's what we pay them for.]
Just because a test doesn't give a result we want, to prove someone has 'IFAb Positive PA', [which it can't because about 50% of PA cases don't demonstrate IFAb positivity', it doesn't mean it's not accurate. The test [well, the one I used] is also very precise. It produces the same result time after time on the same sample. If it didn't do that, then we would not have given it house room.
You've mentioned that group before. I'm curious, what are the testing/treatment they recommend and what papers are they citing that we're not? I'd truly like to know , because I thought we were fairly up to date here. Holly's previous post had many relevant replies.
I'm not against joining multiple groups, in fact i was on another b12 FB group myself at one point. Just curious in case we can learn something here.
I’m confused. Is everyone with PA IFAB positive, but this doesn’t always show up in tests, or are there people with PA who genuinely are IFAB negative?
I tested positive for gastric parietal cell antibodies, but negative for IF antibodies. Blood tests have also shown that I have MMA levels that remain raised despite being on injections. I have neurological symptoms. I previously had low total serum B12 levels (150-160ish?) (prior to treatment); and now have ‘sky high’ active B12 levels.
A number of different hospital doctors (from different specialisms) have seen these results over the last couple of years and have all interpreted them differently.
So I have been told (by different consultants) that I have: a functional B12 deficency (by a neurologist); an autoimmune B12 deficiency (an endocrinologist); B12 non-responsive Methylmalonic acidemia (a haematologist); pernicious anaemia (consultant at private anaemia clinic); a nutritional B12 deficiency (a metabolic disorders doctor).
This list was in chronological order.
It is absolutely no wonder that the GP has no clue what to make of it all - as all of the different consultants I have seen have completely different views.
So in answer to your original question, from my experience, I am not sure the medical profession has much consensus about what constitutes pernicious anaemia, or any of the other forms of B12 deficiency….
No one really knows. It seems many of those people later go on to get a positive IFAB test years later. So perhaps they're waxing and waning at first so not picked up? What's interesting is that people who have had a positive Schilling test can still have a negative IFAB test. So are they instead IF deficient? IFABs just not present at the time? Something else? Who knows.
The UK guidelines do officially recognize "IF negative PA" as a diagnosis. But that doesn't tell us anything about the underlying mechanism.
They could do more research into all this but there doesn't seem to be much (financial) incentive, so we're left to discussing it on forums
No, I don't think so! Generally, everyone with IFAb positive PA will probably have detectable IFAbs, but there are almost certainly another group who don't have IFAb but still have PA.
Hi Flipper! What about the case when someone has multiple negative IFAB results and then a few years later finally gets a positive one. We seem to hear a lot of that here. The opposite also occurs, but is perhaps most doctors don't test after a positive test so we don't know if it would be negative again later. Do you think those are due to waxing and waning antibodies, or something else? This whole topic of IFABs is certainly very interesting!
Ooh, now yer talkin'! Titres rise and fall, like the tide coming in and going out again. It's not a huge surprise if a patient has a string of negatives, then a positive. We never recommended constant re-testing basically because we were busy enough without that. But certainly, we've seen recently with Covid that antibodies come and go, don't they? Some antibodies are short-lived, but some go on for ever. I've heard some folks propose that once the IFAbs have 'done the job', perhaps with their mates the Parietal Cell antibodies, and the Gastric Parietal Cells are no longer functional, then they don't have much else to do, but that's not one for me; sorry!
In my experience, antibody titres tend to rise, but unless we do have a reason to retest, we're unlikely to see them fall. The whole thing is a bit like the three witches, on the blasted heath, in 'The Scottish Play'...
Fantastic explanation thanks!!
And great discussion, thank you both! I've learned a lot today
Eye of newt and toe of frog,
Wool of bat and tongue of dog?
I’m not SI-ing that….🤢
Mind you, Shakespeare was remarkably prescient; who would have thought he could so exactly have described the life of a software developer?
…that we but teach
Bloody instructions, which, being taught, return
To plague the inventor…😛
Are you absolutely certain you're not SI-ing that?!
Thank you for a splendid response.
It's probably similar scenerio to the TPO antibodies in Hashimotos and fluctuating levels
Absolutely. Anyone who tells you they actually understand what's going on hasn't really considered everything. [IMHO].The more I learn, the less I understand, or something like that.
My very simplistic take on all this is if you get one positive result for IFAB must meet you got it....wud do my head in if I analysed it any further 🤣
You've got it bang on there, my friend! One positive in a field of negatives means you've got it. One positive Covid test in a load of negatives means you've either got it, or had it, and so on!
Yes like u said there has to be something positive amongst all the crazy things that happen inside our bodies
I can't argue with that! Awfully complicated things, aren't we?!🤔
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