I seem to be at a sticking point with the findings of the intrinsic factor test. This is due to the way they now interpret the test results. My test result was Au/ml 1.63 ... Which I jumped with joy over as I thought "at last, this proves I have been telling the truth". How wrong I was. It is no longer on the scale of between 1.21 - 1.52. above the latter proving you positive for intrinsic factor. The medical professionals are quibbling over Au v U. I'm lead to believe that the A is just the machine's calibration but, they will not budge. They now say that the way they score the test is between 0-200. They will also not look at clinical findings, ongoing health problems and family history. ( 3rd generation PA ). Also just had a positive ANA hep-2 speckling and staining but these results were never brought to my attention, until they printed out a set of results I'd never seen before 3 days ago. I cried. I could believe that they had sat on these results for over a year. My health has got so bad that I put a DNACPR on myself as I don't know how much more pain I can take. Anyway, thanks for reading this, I'm off in soon for a night shift, pain killers and CBD are my lifeline atm.
Intrinsic factor : I seem to be at a... - Pernicious Anaemi...
Intrinsic factor
Hi,
Sorry to read it's such a battle.
Have you considered joining PAS and talking to them. They might be able to suggest useful info to pass to doctors? You do not need a PA diagnosis to join PAS.
pernicious-anaemia-society....
pernicious-anaemia-society....
"medical professionals are quibbling over Au v U......They now say that the way they score the test is between 0-200.....will also not look at clinical findings, ongoing health problems and family history. ( 3rd generation PA )"
Maybe you could write a letter to doctors listing all the evidence that PA is an appropriate diagnosis.
b12info.com/writing-to-your...
Letters to doctors are supposed to be filed with your medical records so are proof an issue was raised. Always keep copies. I used to include a request in any letter that it was filed with my medical records. Paper trail is useful if you need to make a formal complaint in future.
If you write a letter maybe you could include info on Antibody Negative PA, perhaps refer to this flowchart.
stichtingb12tekort.nl/engli...
There are other tests the doctors could order.
Thread about tests for PA and B12 deficiency
healthunlocked.com/pasoc/po...
Have you accessed all your medical records?
If you disagree with something in your records, you can ask for a note to be inserted saying you disagree and giving your reasons.
Doctors have to correct factual mistakes eg wrong name, wrong date of birth etc. They do not have to change a diagnosis just because a patient disagrees with it.
transform.england.nhs.uk/in...
patients-association.org.uk...
I left a detailed reply in thread below including links to help those struggling to get treatment.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
See also pinned posts.
I'm not a health professional.
Yes, I've just joined the PA society, thank you so much for your reply.
Retired scientist, not medic. I understand your frustration. IFAb was one of the tests I ran, and reporting results to folks who don't appreciate the subtleties of the test can be difficult. In terms of 'putting a number to it' it's even more confusing. U generally stands for 'Units' but 'units of what?' Au generally means 'Antibody Units' but once more, Units of what? The low numbers you quote of 1.21-1.52 as the 'reference range' almost certainly aren't actual antibody-like activity. It's far more likely that this is 'noise' like the background hiss you get when tuning in an old radio. Then you get 'on' to the station and the hiss disappears because you are now getting the signal. A result of 1.63 would be seen as so close to the 'reference range' that it wouldn't be reported as positive, that's for sure. I would expect to see a much stronger reaction. So, the first thing I'd do is to 'run it again' to see if I got the same answer. Then, having considered the whole process and any other supporting information, I'd almost certainly suggest a repeat in a few weeks or months. This is a case of when the laboratory producing the result should be contacted for advice, if there isn't any advice forthcoming. When you see units of anything, then they're derived from an internationally agreed standard, and then you'd have 'IU' as an abbreviation. There isn't one for IFAb. Or there wasn't when I was working, and I suspect it hasn't changed that much. Consequently, it's not possible to compare actual numerical values between different labs when you don't know the method being used. For me, 'Negative'/'Positive'/'Equivocal, please repeat' are as far as we need to go in terms of reporting the result. The numbers are meaningless to anyone on the outside. [Anyone who wants to argue the point on this, I'll see them outside...]
FlipperTD... Could I show you something about the intrinsic factor sliding scale from a UK hospital. I will attach the screenshot to my next message as it states that anything above 1.52 is classed as positive? I would be grateful if you could look at this and tell me if I'm reading it correctly? Many thanks, I do appreciate the reply you sent. I will attach the screenshot to my next message.
I read that the "A" stood for arbatory units? Which they say is just the way a machine used in the lab is calibrated?
I think they refer to AU as 'arbitrary units' in other words, units reported by the analyser. It doesn't indicate anything other than what the analyser produces in terms of numbers. It is better that the analyser uses numbers for output then the laboratory can decide how it reports them. For this, they can analyse large numbers of test results they've processed, and derive their own 'reference range' however it's reasonably to argue that in health, you're not going to have antibodies active against intrinsic factor; it's more likely that the low level results they find are simply 'background noise' like the hiss you get tuning in an analog radio.
It's difficult to comment on what they're calling positive as I don't know the dynamic range of the test system. For instance, are strongly positive reactors coming out at 10, 100, or 1,000?
I think your interpretation of the printout is correct.
So, after seeing that scale used by a hospital in England ( I'm in Wales) You can see that I score high. But, Wales do not now use that scoring method? But still use the test !!!!! I wrote to my GP and told them that it's unachievable.... You cannot change the way you read the test results without changing the test itself. To which I had no answer. I'm picking up my most recent blood test results at 5pm today, it's sure to be interesting reading. I had ANA Hep-2 results which showed speckling and staining.... So I know it's autoimmune... But they didn't even tell me about those results. I picked up on them after being supplied with back copies by the practice manager last Friday.
Hi Ally. IFAb is a peculiar test in that it's detecting an antibody-like response to Intrinsic Factor, whilst not having a primary standard to compare with. Granted, if the underlying assumption is that you wouldn't have antibodies to Intrinsic Factor in health, and IFAb is an auto-immune response, then that's a tricky place to start.
Plenty of hospitals don't perform their own IFAb tests [well, they didn't in 'my day'!] because performing the assay on an automated platform requires the test to be set up, calibrated, run and reported. It's not a 'huge numbers' test, and the assay kit may only do perhaps 100 tests, but in that 100 you'd need to run the calibrators and controls as well as the patient's samples. It's possible that your local lab would have the equipment to run the assay. However, if they don't have enough IFAb samples, and the kit may only have an 'open vial' life of a few days, unless there are loads of others to run, the lab may wait until it's got enough samples to justify running a batch. That could amount to a few weeks before there's enough to use all of the kit. Sensible for 'us', the lab, having to justify every penny we spend, but not as sensible for the punter who wants his result. So, labs will tend to refer samples on to a bigger lab like mine, where they'd be run on the day they arrived and reported that same day. You, as the patient, would not be aware that your sample from Lab A in Wales had been sent to Lab B in the North of England, and reported back to Lab A. Then reported onwards to your GP or consultant. The 'users' of lots of services would be unlikely to know quite how much work is referred out to 'reference labs'. It's more than you'd think. It would be interesting to know how the lab justifies the scoring system they use on reporting, but equally it would be interesting to know what the distribution of 'Positive' results is in terms of their AU system. Your 1.63 is suspiciously close to the upper limit of equivocal for me to want to repeat it on a fresh sample, perhaps in a few weeks.
Good luck with this one!
Thank you so much for you replies, it's so difficult to speak to anyone with knowledge about these matters. I truly thought I was being stupid when comparing my results to the scale given, but then they tell me that the intrinsic factor test is now scored 0-200 ? How is that even possible? If you change the way the test read, surely you need to change the test itself as the reference scale and the way you're test is reported back to you is in decimals? 1.21- 1.43-1.52 so on and so forth. I am at a loss as to why Wales have done this ? I told them it is now unachievable. 0-200 is baffling.
I think we're getting a bit closer on this one. I suspected that the scale for the test would probably go to some huge number such as this. In my experience, I did occasionally get some samples with very, very high results. So much so that, in order to get an actual value it was necessary to dilute the sample and re-run it. The small numbers such as 1-point-anything look like they've calculated their range from large numbers of negative samples they've run. Calculating reference ranges for tests is complex, and for something like IFAb it's even more fun than usual. A dynamic range of 0-200 is quite feasible, although it's highly unlikely that they'd ever get results at the extreme bottom of the range. Please bear in mind we're not measuring something like Haemoglobin, which is comparatively easy, and methods are fairly standardised. With IFAb they vary considerably. Trying to mix and match different methods, ranges and numbers is doomed.
It's shades of picking up recipe books and trying to mix methods, whilst ignoring the units for the quantities. So, mixing grams, ounces, cups and spoonsful. Doomed!
It is very complex. Added to this a recent old test result for Hep-2 ANA showing speckling and staining was withheld or over looked? I'm being diplomatic here. They stated the clinical relevance is unclear? 30 minutes later I had a damn good idea that this could/might be proof in part of another autoimmune condition they think I might have, namely Sjorgrens syndrome. I appear to be quite a medical mystery. Add gluten intolerance and a mass of allergies I think I'm ready for the scrap heap🤐
It would be nice if it was simple, but Immunology is a very complex subject. [Like all the other Pathology disciplines!] Cross-reactions, non-specific reactions, and background reactions; 'signal to noise ratios' and such. Auto-immune conditions rarely seem to occur in isolation, they're more likely to 'hunt in packs' and it's purely another matter of sitting back and waiting to see what your body throws at you next time. It's good to be vigilant, but don't let it rule your life if you can help it.
This sounds negative but I have no life. The pain is now all consuming, forcing myself to work full time in a job that requires me to be on my feet for 12.5 hours. I manage now by altering my shifts to one on one off, I do nothing else as it takes 24 hours to recover? I will battle on for as long as possible but, with no support or understanding from my GP, it's self help and knowledge gained from good people like yourself. Many thanks.
The use of an arbitrary unit for the output of the analyser is down to the fact that there isn't an International Standard for IFAb. It produces numbers, and they have to figure out what to do with the output!
So sorry to hear how discouraged you are. I understand the DNRCPR orders. I have one too. I just don't know how much more I can tolerate. I have had that happen too...learning about test results a few years later; perhaps something that could have been treating but is now worse. Our healthcare system is so negligent and broken. My best to you.
Thank you for your reply... It helps a lot to know that other people are having the same problems, it can be helpful to hear how others have dealt with these issues. I've just been advised by our NHS service to maybe change my GP? It is something that I'm am considering. All my current surgery want to do is put me in antidepressants, I'm not depressed, I'm angry. It seems that unless they can write a prescription for something, they don't want to help. I've known for a long time that I have autoimmune conditions, it's clear if you follow the clinical symptoms. But for some reason they are ignoring all the information I produce.
Hi Allywales8663,
Welcome here. I am so very sorry to read. Now you do not mention your vitamin B12 results. Whilst the ill informed are fannying about over letters, let us get the ball rolling.
You are 3rd generation PA, having an extremely difficult time and are in severe pain with doctors who do not understand. Nor are willing to be educated. This maybe due to time constraints and staff shortages. Not our problem. So, we need a plan for you to move forward :-
1) You can change NHS GP but it may take time for a new appointment and blood tests. Plus, you may or may not have a similar rigmarole.
2) You can see a private GP near to where you live. Their approach tends to be a lot different. (You are cutting to the chase).
3) You can see ‘The Doctor’ in Cambridge which I will private message you. (You go straight to the Main Man).
Your meme has wales in, out of curiosity, wyt ti'n siarad cymraeg, cariad ?
Please consider taking some time off work. Then once treatment has commenced, you are starting to feel a bit better, we can consider wading through the NHS sbwriel (rubbish).
Many of us have had long lengthy journeys with misdiagnoses, wrong medications, results going missing, so you have lots of empathy.
😘
No, I do not speak my own language I'm afraid... I wish I did as it sounds so wonderful. Thank you for your reply, and yes, I'm making arrangements to change GP surgeries but thankfully I now have the deputy practice manager on side. Hopefully she will support me as our last meeting in person went well. I'm also going to contact NHS P.A.L.S as well as the NMC for support (I'm a union member) as they offer a support service to healthcare employees.
"But for some reason they are ignoring all the information I produce."
If you put the info in a short, polite letter to GP/other doctors/practice manager I think it's harder to ignore.
b12info.com/writing-to-your...
Letters to GP/other doctors are supposed to be filed with medical notes. Keep letters short. Provides a paper trail in case a formal complaint is needed in future. Always keep copies.
Being assertive can affect GP/patient relationship so be prepared for this.
GPs can only remove patients from their list under certain specific circumstances. It's my understanding that they cannot remove a patient who is currently undergoing a course of treatment but please check this for yourself.
bma.org.uk/advice-and-suppo...
Hi, thank you for that advice. I will take onboard your advice but I have to dash as I'm night shift tonight and need to grab a few hours sleep.
Hi,
Apologies if I'm repeating anything you've read before. I post a lot of info so might be worth reading it over several days.
Some forum members have been supported by Tracey Witty who runs B12info.com website.
Lots of useful info on her website.
She sometimes blogs about B12 deficiency issues including personal stories.
You could leave a comment under blog posts that are relevant to you and she might respond if she has time.
There may be useful info on The B12 Society website (charity based in Scotland) -they have a good symptoms list.
Please think about joining and contacting PAS.
pernicious-anaemia-society....
I'm sure they could point you to info on diagnosis of PA.
PAS members can join PAS support groups, there are several in UK. They can be useful places to swap information.
pernicious-anaemia-society....
Not sure if they meet face to face but they do have online meetings which are listed at bottom of page in link.
Flowchart
Have you given your GP this flowchart from a UK document which outlines when Antibody Negative PA (PA where IFA test is negative) can be diagnosed?
stichtingb12tekort.nl/engli...
Nudge them to look at Background Information section in next UK document which says that about half of people with PA get a negative/normal range result on IFA test.
cks.nice.org.uk/topics/anae...
Have you asked for a gastrin test?
labtestsonline.org.uk/tests...
Care Opinion - health review website
Some forum members have left their stories on Care Opinion. They can be submitted anonymously.
Sometimes GP surgeries and hospitals respond to the stories.
Put "B12 deficiency" and "Pernicious Anaemia" in search box to find stories by people facing similar issues.
If you join PAS they may be interested in your personal story.
pernicious-anaemia-society....
Self Treatment
I think I understand a bit of what you have experienced.
I was left untreated for many years, was gaslighted by medical profession on several occasions including being shouted at, told it was depression, FND - functional neurological disorder, hypochondria, all due to depression, psychosomatic symptoms, MUPS - medically unexplained symptoms etc etc....
When I finally realised that the GP practice I was with when my symptoms were at their worst (over 50 typical symptoms with many neurological issues) were never going to treat me, I knew my only option was to treat myself.
If I hadn't started over 10 years ago to treat myself, I am convinced I would now be in a care home with permanent dementia and paralysis or worse.
I have been left with some permanent symptoms and some effects from the trauma but seem to have avoided serious spinal cord damage.
My life is so much better than it was. I improved for 8 years running after starting to treat myself.... I wished I'd started sooner.
I have since managed to get some B12 from NHS but nowhere near the amount I need. My symptoms start to return within a week after a B12 injection.
Recently some new symptoms have started which I suspect might be the result of nerve damage when younger showing up as I get older.
Some get extra B12 injections from private GP or beauty salons. Some try high dose oral B12 but this doesn't work for everyone (didn't for me) and some as a last resort turn to self injection SI. SI is mentioned in one of the pinned forum posts.
Have you thought about moving to a new GP practice?
nhs.uk/nhs-services/gps/how...
nhs.uk/nhs-services/gps/reg...
If you're close to more than one ICB (Integrated Care Board) area (Health Board in Wales/Scotland) might be worth looking up local B12 deficiency guideline for each area. Local B12 deficiency guidelines can vary a lot between ICBs. You can sometimes register at a GP surgery outside your local area eg closer to your work place.
To find local B12 deficiency guidelines
Search online for
"name of ICB/Health board B12 deficiency guideline" or
"name of ICB/Health board B12 deficiency treatment algorithm" or
"name of ICB/Health board B12 deficiency management"
If you can't find them online or by searching forum posts here then best bet is to submit an FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them.
Put FOI or Freedom of Information in search box on ICB/Health Board website which should take you to a page explaining the FOI process.
Local MP may be worth talking to, MPs website should have tel no or online contact form for caseworkers. Hopefully they'll be trying really hard in lead up to election.
Thread about Patient Safety, has links for those having difficult health experiences with B12 deficiency.
healthunlocked.com/pasoc/po...
ICB or Health Board's local B12 deficiency guidelines may change soon due to new NICE B12 deficiency guideline published in March 2024.
Just wondered if you're in Wales (from your screen name).
Thread on Patient Safety (in one of my other replies) has some links specific to Wales.
PAS is based in Bridgend, Wales and there is are two PAS support group in Wales, one in South Wales and one in West Wales
There are other forum members from Wales so maybe you could look at their threads and posts.
I think JanCymru is one.
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