Is it a fact that the Intrinsic Factor antibodies come and go continually ? Or do they not appear when the patient has had P.A. untreated for a long period ,and the antibodies have “done their job “ and destroyed the parietal cells ?
INTRINSIC FACTOR ANTIBODY TEST . Has ... - Pernicious Anaemi...
INTRINSIC FACTOR ANTIBODY TEST . Has any member with P.A. had to have more than one IFAB test to get a positive reading ?
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wedgewood
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Hi Wedgwood, I only had one test and was positive on that. Was physically sick when the nurse told me. My body knew I was in for one hell of a lifelong ride.
I think Martyn Hooper, chair of PAS was tested several times.
I’m mentioning this because of the letter that Nackapan had from her surgery yesterday , which stated that B12 injections would be withdrawn from B12 deficient patients that didn't have a positive IFAB test , when it is common knowledge that about 50% of PA patients test negative. I thought that that this was an acknowledged fact . If so , how could any surgery make such an outrageous statement ? It beggars belief . Do you have an official reference to this I wonder , that Nackapan could quote to that surgery ? Thanks .
I think Nackapan might find some of these useful....
BSH Cobalamin and Folate guidelines discusses Antibody Negative Pernicious Anaemia
(where patient has PA but IFAb test is negative)
Can't remember which page though.
b-s-h.org.uk/guidelines/gui...
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Will add more when I have time.
I hope Nackapan has a copy of local B12 deficiency guidelines. Some of the local guidelines I've looked at mention that a negative result in IFAb test doesn't rule out PA.
Some local guidelines mention Antibody Negative PA.
This page from NICE CKS states that IF antibodies are only present in about 50% of patients. There are links to research articles.
cks.nice.org.uk/topics/anae...
"which stated that B12 injections would be withdrawn from B12 deficient patients that didn't have a positive IFAB test"
I hope PAS and Tracy Witty from B12 Deficiency Info know that this is happening.
pernicious-anaemia-society....
If that happens where I am, I will be asking to see the policy/guidelines that suggest this. I do not have a confirmed diagnosis of PA.
My suspicion is that the GP surgery is reviewing patients on B12 injections in order to try to cut costs.
There may also be a planned review of people on B12 injections across the ICB (Integrated Care Board) or Health Board.
I'd be tempted to do some online digging to see if there is a planned review in the area.
You are a star Sleepybunny !
Thank you very much
• in reply towedgewood
It may sound stupid, but I dont even know if I have had one. Mainly because 15 Years ago I didn't even know anything about B12. All I knew I had megoblastic anaemia, enlarged blood cells. Double stranded DNA.
I didn't ask!!! Never asked !!
It is only in the last few years I realised how stupid I was in not questioning things.
jade_s• in reply to
Heh. You're not stupid! It's the doctors! It's their JOB! Anyway I know you know this but just wanted to reinforce the message that we shouldn't be beating ourselves up for failing to catch the (basic) errors made by the medical community. I still beat myself up for reducing my thyroid dose after my new GP said my dose was too high, based only on a low TSH reading (and FT4 firmly mid-range!)... all that after I had gone to all that effort to get my previous GP to put me on meds.
wedgewood• in reply to
Well , if you test negative to IFAB at Nackapan’s surgery , you won’t be getting any B12 injections , especially if your B12 readings are high! What a thought ! I’ve got really wound up about this , wondering how many patients at that surgery are going to be suffering soon , trying to fight their corner against the ignorant doctors .
• in reply towedgewood
You are right ..... Now ask the question ... how many of these patients are as well informed as Nackapan!! 1% . So that will leave 99% especially the most venerable to suffer believing there Doctors cant be wrong. I understand you got really wound up, like the rest, but we are mere mortals who can come here and vent our anger BUT are powerless in helping the 99%. How many of the victims going to suffer and maintain a stiff upper lip for fear of upsetting there doctors.
It's a crazy world.
wedgewood• in reply to
I think that the letter should be referred to the PAS . .. They could try to point out the errors in the letter, using quotes like Sleepybunny’s .
• in reply towedgewood
Good idea !!!
Nackapan• in reply to
I will do my best.
I've tried before taking in posters ect.
This is the new management.
I wax ready for them but thought okay as one round with them already.
10 letters in that were never answered.
I kept my prescription.
A new nurse I've not met yet az well.
I'm hoping PAS can help too
I've had a day to cool off .
Tomorrow I begin.
Slowly calculated or hoping to get less stressed this time.
Too many rounds.
Its easier in a way as such a bad letter
• in reply toNackapan
10 letters not acknowledge umm not in line with NHS guidelines..... should of received reply.
I know one of mine remained un answered, second one hit a nerve .... I had received letters from Birminham asking how I am getting on in the new surgery some years ago, and told them .... could not believe it investigation resolved in 5 days.
What do you have to do to be heard and taken seriously.
Nackapan• in reply to
The result wax what i wanted.The nurse also left??
I had to ask if the amended homepage was overriding the mistaken shd had made .
Also my b12 Injections continued !
Sleepybunny• in reply to
Have I understood correctly that your old surgery wrote to you asking how you were getting on in your new surgery?
Wow.....
The GP surgery I had most issues with couldn't wait to get rid of me. The GPs wrote me a very polite letter basically asking if I had thought of going somewhere else....
• in reply toSleepybunny
No ! I did receive a letter from one of the Lady Doctors down there who left and retrained in dermatology, wish me well etc etc.
After we were kicked out of the surgery, about a year later I got letters from Birmingham NHS with a questionnaire of how I was getting on at the new Surgery.
Perhaps I should inform them how times have changed lol
I can’t understand why they retest B-12 levels. I wish everyone said to the phlebotomist the exact words,
‘I do not consent to you retesting my vitamin B-12 levels now that treatment has commenced’.
Maybe when blood tests are planned we should take a letter with us stating that, ready to hand over to nurse and perhaps include quotes from PAS article below?pernicious-anaemia-society....
EllaNore• in reply to
That is crazy. It's like they're regressing instead of progressing in knowledge. This probably doesn't pertain to me because I'm in the US but I also did not have an IF test. Mine was based on other findings like the enlarged blood cells and low potassium low chloride low sodium, low b12, and high BCR. And some other things. But my oncologist is going to test me next time I'm in in Dec. But she agreed with my doctor that I have PA based on other test results.
One problem is that not all PA patients get enlarged blood cells , and if they don’t have that , many doctors believe that the patient does not have P.A. . Thanks for letting us know how it is in USA .
• in reply towedgewood
I'm in the US and my doc based my PA diagnosis on my parietal cells test. I had two IF tests that were normal.
"One problem is that not all PA patients get enlarged blood cells "
For people reading this forum who suspect PA or B12 deficiency from other causes and who don't have enlarged red blood cells (macrocytosis).
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
Your doctors might find this info interesting EllaNore...
Some of the info is specific to UK.
Testing for PA
pernicious-anaemia-society....
I have also read that a pepsinogen test may be helpful in helping to diagnose PA.
Search online for "pepsinogen test pernicious anaemia"
(spelt anemia in US)
PAS page for health professionals
pernicious-anaemia-society....
Thank you very much sleepybunny. For even thinking of me.
This is interesting from what your link said.
IFAB TESTING: Important: A vitamin B12 injection within 48 hours of testing and, in some cases, within one to two weeks of testing can interfere with test results, so this test should either be done before treatment or at least a week or more after an injection.
This would mean I would have to go without an injection for at least a week before testing.
I am confused about my condition and scared. I've had a headache for 4 days and very weak. I just think I should be feeling better than this.
I think I need to find a private holistic doctor that will look at everything and be willing to listen and figure things out together. Money is the problem.
Thank your again Sleepybunny!! I will print this out and save the link.
The latest systems are much more robust against interference. I posted a paper on this below. Few months ago I skipped my evening & mornings shots but had had one 24 h earlier, and my IFA was *still* negative 😂😭🤷♀️
Sorry EllaNore I've started a reply to your reply from a few days ago but haven't managed to complete it yet!
Thank you Jade_s. So a negative means you don't have any IF and you do have PA?
That is sweet, I know writing in here is very draining. Please don't push yourself. It's OK if you don't respond. Unless there is something you need to get off your chest. 🦋🌺🦋
Ok, I found this.
A positive IFAB test result indicates the presence of circulating autoantibodies to intrinsic factor. The combination of megaloblastic anemia, low serum vitamin B12, and the presence of serum IFAB strongly supports the diagnosis of pernicious anemia. Positive IFAB test results are also observed in some patients with other autoimmune disorders such as autoimmune thyroid disease and rheumatoid arthritis. These patients may be at risk for developing pernicious anemia at a later date.
So I want a negative test. But then I will be wondering what is wrong with me then. At least a positive test would give me an answer.
Nackapan• in reply to
Too ill probably I was
Never had an Ifab test either
Same, my B-12 levels were low and Ferritin very low. No further testing until urgent admission to neurology ward when I asked the nurse what bloods, she was taking, she said,
One of everything !!! (Blank faced, I thought - don’t tell me porkies, sweetheart).
I 2as told b12 not done in A and E after I contacted them telling them my symptoms were caused by low b12. Wanted it to be a learning curve
Ha. .
They were convinced I was on recreational drugs
At least a brain ct scan done. .
The most upsetting was not being heard..
Also when the allotted time up on trolley and they change you to a bed.
Some older women.
I was surrounded by elderly women having had nasty falls.
A couple were unkind at me getting a bed .!!
A good reason to do b12 tests where I was !! ??
Confused
Falls
Vision problems
A brain dcan before a b12 blood test
Yes also if b12 levels are high
I've never had a IFAB test .
Also was told injections were for life.
My symptoms frightened them.
They saw slow improvement
Also have found nothing else to treat.
The new Gp Partner only recently asked a neurologists opinion. Never met me but
he santioned my b12 regime.
Much to the go's suprise I think.
I also do not like the wording of scaring patients that more harm than good.
The symptoms they have quoted are among b12 deficiency symptoms.
Not 'overdoss'
Not listed anywhere on thd b12 ampoule ' side effects ' 🙄
What is very frustrating is, this is what you find if you Google PA. Misleading info like this. They act like it's no big deal to have this. It is devastating!!! What is wrong with doctors? Seriously, have they never known anyone personally that suffered from this? Isn't there a doctor or there who has this themselves and can change the way people think about it? Sugar coating it leads to people feeling they're crazy because no one mentions it is pure hell living with this.
Living With Pernicious Anemia
With proper treatment, people who have pernicious anemia can recover, feel well, and live normal lives. (NOT TRUE!) If you have complications of pernicious anemia, such as nerve damage, early treatment may help reverse the damage.
Ongoing Care
If you have pernicious anemia, you may need lifelong treatment. See your doctor regularly for checkups and ongoing care. Take vitamin B12 supplements as your doctor advises. This may help prevent symptoms and complications.
During your followup visits, your doctor may check for signs of vitamin B12 deficiency. He or she also may adjust your treatment as needed.
If you have pernicious anemia, you're at higher risk for stomach cancer. See your doctor regularly so he or she can check for this complication.
Also, tell your family members, especially your children and brothers and sisters, that you have pernicious anemia. Pernicious anemia can run in families, so they may have a higher risk for the condition.
Source: National Heart, Lung, and Blood Institute, National Institutes of Health.
Have you seen the Sally Pacholok movie & documentary? She is an emergency room A&E nurse in the US & describes exactly the kind of situation Nackapan was in ... all people that have signs of b12d but docs aren't even aware of it and just laugh it off. That was in the 90s! It's why she wrote her book.
No I haven't. I will Google it for sure. Thank you. They are completely in the dark about B12 in the US. And I just don't understand why. You would think that there was somebody out there who suffered from this in the medical field who could open this wide-up and show everybody the reality of B12 deficiency.
Now everybody's using it as a weight loss product and they're giving B12 the wrong impression. B12 is so much more than a weight loss fad!! And they have no idea that it's actually a life-saving medicine!!!
Here you go, they are both here. The movie is a dramatization of her life. The documentary is extremely good!
I'm watching the movie right now on YouTube!! The opening scene brought tears to my eyes. Thank you so much. I'm going to send this to everyone I know!!
Yes it's heartbreaking isn't it! I rewatched it myself a few days ago and shed a few tears in between yelling at the screen. Fyi i changed to link above to the youtube user's page, both videos are there.
Everyone should see them! Take care
Hi Wedgwood,I had a call from my GP surgery recently regarding my B12 jabs. It was prior to my annual haemochromatosis clinic visit.
First I was reminded that I had an upcoming clinic appointment. Then I was asked why I get my blood tested every 8 weeks. I told them I don't. They were adamant that I do. I corrected them that I only get a blood test annually (to monitor my iron levels and thyroid) but do get B12 jabs every 8 weeks.
They acknowledged their error then asked why I needed the B12 jabs. Because I have pernicious anemia??
They then asked if I could discuss the need for the B12 jabs with my haematologist during my clinic appointment, which I did.
I'm not sure if they are revewing my need for jabs in general or that I get them every 8 weeks instead of 12. Haematologist was puzzled when I raised the topic. It turns out that the GP that is reviewing the need for my jabs, is the same GP that diagnosed me with PA over 10 years ago.
6 jabs per year instead of 4.
4 jabs cost around £8 per year, 6 jabs cost around £12, not including nurses time, 5 minutes each time.
They're either looking to save the cost of the addition 2 jabs per year or the cost of all of the jabs.
That's quite a saving NHS Lanarkshire, well done.
PS. Sleepybunny discovered NHS Lanarkshire were reviewing B12 jabs a while back so I was expecting it. I'll see what happens when I go for my next jab. Perhaps the German online pharmacies will be getting a surge in orders from Lanarkshire.
PPS. I SI every 8 weeks, in sequence with my official jabs, so I really need a jab every 4 weeks.
It really is outrageous what is going on at the moment with B12 injections . We who buy the B12 ampoules from German online pharmacies know exactly how much the ampoules cost, ( about 90 pence each) so surely the NHS ,with its buying power , could get them much cheaper? Then to make the injection even cheaper , patients could be trained to self inject .the Sub-cutaneous method is also effective as we know , and diabetics are shown how to inject insulin by this method. .So , where is the problem? It beggars belief ! Good that you self inject . You are saving yourself from further damage . Good luck anyhow with your next jab . Go prepared! 👍
3 times i think
I've read here people that have had 2 tests in a short period of time & first one positive, second one negative. I haven't seen any papers on this. Maybe the "The Many Faces.." paper would be useful.
There is also variability in performance between different assays, some have higher false negative rates, so the lab/machine you use will affect the result. The link is on my computer so i will edit this post to add it later... but I don't think this will help Nackapan much.
The arguments of IF coming back negative in 40-60% people with PA plus the existance of "IFAb negative PA" are probably the ones I would use.
So flipping annoying. How can they just blindly, willfully??, ignore existing guidelines & widespread knowledge about poor diagnostic performance of IF antibodies 😠
Wedgewood here's the paper I was referring to, full text is available
sciencedirect.com/science/a...
"Comparison of different immunoassays for the detection of antibodies against Intrinsic Factor and Parietal Cells" Lukens et al.
They found that several of the methods had high false negative rates. They also found pretty high specificity rates, higher than you would expect based on the literature that 40-60% with PA are found to be IF-negative. They mention that "we do not have any clinical data and patient characteristics concerning CAAG or vitamin B12 deficiency. Thereby the true clinical sensitivity and specificity could not be calculated. " I guess I wouldn't really refer to this paper, but just adding it here for completeness.
Sleepybunny's links are much more relevant.
So - reliant on being on the right side of the 40-60%; far advanced enough to get a positive but yet not so bad that intrinsic factor has completely gone so no antibodies left ?Best of luck with that, then !
My opinion about surgeries sending out these awful letters is that there are far, far too many cases now for us to still believe that this is a regional issue. The covid pandemic can no longer either be the excuse. If there is a lack of nurses, then say that. Teach people to self inject safely. In small support groups if you like. Accept the need is genuine, and do something to help. Isn't that what local GP surgeries are for ?
If not, then accept that it is failing us - and don't judge those who take their own health decisions.
I have had I think three negatives now with IFab test.
I'm really not interested in having another. But then, I don't have to, since a single visit to a new GP managed to result in a letter from him informing me that unless I stopped self injecting, I would not receive another NHS B12 injection, despite having been told previously that I would get one every month for life as a maintenance dose. I had by then got to a stage where I could no longer be bothered to reply to someone who had probably barely scanned my medical notes and knew little, if anything, about my case or my diagnosis. Or what specialist advice my usual GP was acting upon.
I was a teacher - and so understand when it is worth the effort (or the B12) trying to educate. You cannot educate anyone who either has no respect for you or who does not believe that you could posess knowledge that they don't have yet. Understanding this does not always stop me trying - but in this case, I really was too disheartened. We are unlikely to cross paths again. I rarely contact GPs now - and he'd probably not be high on my list, given a choice.
This is incredibly hard to go through. It can all be brought to nothing by anyone who hasn't had to read any of the latest research, as we have had to. I did not know B12 even existed - until found to be deficient. I know they don't have the time, but we do: plenty, as some of us are now unable to work.
What we don't have is the ability to concentrate, or to remember what we read or the cognitive ability to make sense of it all, or clear enough vision to read the papers in the first place. So if Nackapan , despite being as ill as she is, has done all that reading - she has done far more than any of those who are paid to help her get well.
She should not be forced, yet again, into a position where she has to justify the right for her treatment to continue.
.
Well said!
I'm slowly coming to the realization that they just don't care nor care to understand how severe PA/B12D is. "It's just a vitamin." I rewatched the Sally Pacholok dramatization and it's uncanny how nothing has changed in so many decades.
It grieves me to think that Martyn Hoopers work of years seems to be totally ignored . But we have been enlightened by what he has achieved , and will carry on the fight, no matter what .
What choice do we have ?
Yes, very well put.
Thank you.
I was particularly 'affected' this time/round?
As you quite rightly say 'hitting a brick wall ' repeatedly is very difficult.
Was thinking this morning as a generic letter rather than an individual fight.
Others may oppose this.
I do hope so, as the letter is so open to it.
Wrong with every word.
It's been nearly 4 years trying to get the message through to my surgery that I'm not so' unusual. '
.Offered information for professionals by PAS.
Given information.
Written countless letters.
Asked them to 'read up'
Written to my local MP
Gone through PALS at the local Hospital.
Making it clear not a complaint but a learning opportunity !
Awareness posts on local neighbourhood Web site
A complete B12 ' bore' to ex colleagues still in the NHS
Retired NHS workers still in contact with managers working tol of their game.
Offered myselr as a case study as has my daughter
Fights with the district nurses about delivering my 92 yrsr old mums b12 injection.
Raising awareness how much difference it makes in her and I exoect many elderly people not even been tested.
Liaising with her surgery.
Blocking b12 levels being done.
Making them think ??
Changed their system of having to ring 3 seperate bodies to get one b12 done by a District nurse/ HCA
Ladt one was just done!!!!
One text asking me b12 in her home ready!!
Blocking discharges 3 times at Addingbrooks until a b12 test finally done and a referral to Queens in London finally done.
Some really helpful doctors there.
Loafs of tests as a teaching hospital.
Still a fight though accessing the doctors.
Noone reading back. Joining any dots
Took one to take an interest .
Fire fighting
Giving more and more workload ax patients suffering going round and round the system.
I'm hoping PAS succeed in really making a difference
Tracy Witty
Dr. Chandy If often dismissed as broke the rules.
Made b12 awareness in the papers/ worldwide.
Let's all keep the awareness up.
There's enough of us !!!
In the reply from FlipperTD , who has performed thousands of IFAb tests:".....no idea if some went from Pos to Neg, because once we'd established a "pos" result, we considered that was enough....."
It was my understanding that this was the usual procedure. " Stop at a Positive".
So what is the reasoning behind this complete reversal, I wonder ?
The catalyst for this shift, you might expect, would be a recent research paper. Some real proof that a counter-reversal is not only possible, but a common occurrence.
Otherwise, it would be a massive waste of money in a search for the odd individual - not one that could be justified.
And yet ...... if that evidence existed, surely the word would be out by now ?
Since, for most people here, you are lucky if you get one chance at an IFAb test - it seems unlikely that many GPs are even aware that a Neg can become a Pos.
Perhaps a Pos becomes a Neg only if you are unlucky enough to have got to the stage when no more antibodies are to be found, because there is no more Intrinsic factor left to attack , just as wedgewood suspected.
PAS page for health professionals has some useful comments on IFAb test.
pernicious-anaemia-society....
Might also be worth digging online among ICB/CCG/Health Board documents for info on Intrinsic Factor Antibody testing as there may be an acknowledgement that some people with PA will test negative.
The Gp also knows I have trouble as text disappears from the right sti as I read or write .So a slow process collating stuff.
Nackapan I think if you know what you want to say / what topics you want to address, we could help formulate some corresponding text with references, if that would help. Still I think the PAS would be the most experienced at this. If you can't manage to call, you can also email them.
I have done 2 IFAB tests in space of 3mc... one in Poland (privately), one in UK(nhs)... both strong positive....
Yes off you don’t have parietal cells you can’t produce intrinsic factor, this is what doc told me therefore been diagnosed with PA, injections for life, this is an interesting article
Personally, I've tested multiple times over the years and I always get a negative on intrinsic factor antibodies and a positive on parietal cell antibodies. I can't tell whether IFAB comes positive more often later on.
I've never had a positive test so I can't comment on that, but I have a letter from the specialist at the time of diagnosis saying that only 50% of people have intrinsic factor antibodies yet my injections have been stopped because I don't them. What caught my attention in a post showing blood results yesterday was that their Derbyshire health authority was no longer testing for IFA and this is what the website said:"Anti-intrinsic factor antibody (IFA) testing
Although IFA is extremely specific for pernicious anaemia (positive predictive value 95%), it has a low sensitivity of 40–60%, meaning that only about half of people with pernicious anaemia will have anti-intrinsic factor antibody (i.e. its absence does not rule out a diagnosis of pernicious anaemia). For this reason, the routine reflex testing of IFA when vitamin B12 levels are low is expensive with a low detection rate."
Hi,
Tanitha, I'm so sorry to read that your injections have been stopped. If you start your own thread on forum about this, I'm sure you'll get lots of support.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some overseas members.
pernicious-anaemia-society....
PAS have a helpline that members can ring and an online contact form.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
Link about writing letters to GPs about B12 deficiency
(some info may be specific to UK)
b12deficiency.info/writing-...
I left a detailed reply eg causes, symptoms, UK B12 documents, B12 books, B12 websites, B12 articles, hints on dealing with unhelpful GPs on thread "Insomnia" 4 days ago. You might find something useful in my replies.
Some links may have details that could be upsetting. Some of the info will be specific to UK.
I am not medically trained.
Scientist, not medic.
From experience of performing thousands of IFAb tests, not from interacting with patients:
All samples received, with low to very low to virtually undetectable B12, would have IFAb performed. Some were strongly positive, whereas some were negative; not so much as a sniff. Those were reported as 'Negative; suggest repeat in 3 months' and some were repeated but I have no figures on how many were even repeated, never mind how many 'seroconverted' from Neg to Pos, but we certainly did see some do that. I have no idea if some went from Pos to Neg, because once we'd established a 'Pos' result, we considered that was enough. so, it's a bit of a mystery.
"I have no figures "
Would it be possible to submit a FOI request to find out?
That's always a possibility but the logistics of how the data would be obtained scares me rigid. It's not the sort of information that could easily be obtained, although it would be possible. Given that anything's possible!
My first ever B12 level was 106 ng/l (200-900) an IFA test was not done/triggered by the labs.Folate level was triggered .
I've got a paper copy .
It isn't under any heading/abbreviation I may have missed ?
I had no knowledge about any of this then.
A parietal cell antibody test was done and was negative.
Microchondriaand others included liver ?
I think you'll find that not every lab will reflex test for IFAb on low B12s, possibly because they don't do it and have to send it off, or they don't think it's sensitive enough. The other auto-antibodies are another matter, but auto-antibodies 'hunt in packs' and if you find one, you might find another.
Good luck!
That's interesting as it's reported that too soon after a B12 injection can give a false positive. Just wondering whether that could be the case with some of the repeats.
Hi Wedgewood, I've had two IF antibody tests. First one in Sept 2020 was strongly positive but second one in June this year was normal. Yet I was sick as a dog. Different NHS GPs at different surgeries refused to accept I had PA both times because my B12 tests were normal. Same miserable story as so many others on here.
Thankfully I found a private GP who was prepared to treat me based on my symptoms. My response to the loading doses was nothing short of a miracle. But I was deficient for so long that many of my neurological symptoms are still very disabling & I know I have a long road to recovery ahead. I am self-injecting every other day because as far as the NHS is concerned I don't have PA!
What I don’t understand that if your initial IFAB test was positive. ( this proves 100% that you have P.A. , and will be acknowledged by every doctor as such ) why would you have another test ? Yes you obviously have P.A.
Really pleased that you are now self-injecting . It can take a long time when you have had untreated P.A. for a lengthy period . Best wishes .
The first test was during the covid pandemic so GP told me to takevoral B12 from the pharmacy. No consultation, just eConsult. No dose recommendation even. I had to google it. After 6 months on the tablets I told her (by phone this time - no face-to-face) that I was getting worse with new symptoms appearing. She said that meant I didn't have PA after all. It had to be something else! Fast forward 8 months of steady decline & a diagnosis of depression 🤣 Of course I was depressed by then. Who wouldn't be? In desperation I switched surgeries but it was out of the frying pan, into the fire. New GP insisted on second IF antibody test which was negative. By then I was so ill I had retired from my job of 20 years & could barely get off the sofa. My symptoms were so debilitating I thought I had Stiff Person Syndrome or SPS. I spent a fortune on private tests & consultations to no avail. I kept coming back to PA & my initial positive IF antibody test. I joined the PAS & read all Martyn's books & devoured posts on this forum. Finally I found a video online about SPS & specifically that the differential diagnosis included B12 deficiency! I knew I was onto something. Eventually I found a private GP & told her the whole story & the rest, as they say, is history.
When you got your first positive IFAB test , you should have immediately received loading doses of B12 injections . That GP has displayed gross medical negligence. To have prescribed tablets was outrageous. The guidelines state this quite clearly . It’s also acknowledged that PA patients can have PA even with a negative IFAB result , and you were having all the symptoms . Pernicious means DEADLY . I am truly shocked to hear of your experience . The PAS would have helped you to challenge your ignorant and dangerous GP .
I tried with documents from the PAS for medical professions but it didn't have any effect. Our GP services here in Sudbury and Long Melford were poor before the pandemic. Now they've collapsed altogether. You still can't see them face-to-face unless by invitation! They're nothing more than a call-centre & the stress involved in every part of the process from ringing up to seeing someone and beyond is no longer worth it. The admin has collapsed too with reports, referrals & test results going missing or not being acted on even if they are positive. Thankfully I can afford to go privately for now but may eventually move to France which has an excellent healthcare system. It's sad but C'est la vie!
Yes , it’s the same at my surgery in Gloucestershire. Totally dreadful. It means that people who cannot afford any private consultations are out on a limb , and many will get seriously ill . No one cares . The NHS is truly not fit for purpose at the moment . I don’t know what the doctors are doing now that they don’t see patients face to face anymore .
Hi migi2z.
I think these are your local B12 deficiency guidelines.
Covers Ipswich and East Suffolk, North East Essex and West Suffolk.
westsuffolkccg.nhs.uk/wp-co...
CCGs (Clinical Commissioning Groups) were replaced by ICBs (Integrated Care Boards) on July 1st 2022.
List of ICBs England
nhs.uk/nhs-services/find-yo...
It's likely that the ICB for your area will take on the clinical guidelines of the CCG they replaced. Keep an eye on local guidelines as they get reviewed and this can affect treatment given. It's possible that the change from CCG to ICB will lead to a review.
I am so sorry to hear your story clearly you had been struggling for sometime ..it does however almost mirror my own story ..and validates how I too have been feeling !!!
Regarding depression, many times the first symptoms of B12 deficiency are psychiatric. Symptoms of anything from irritability to dysthymia to depression to psychosis can be mimicked by B12 deficiency. And that makes sense: B12 deficiency is a neural disorder in which myelin disintegrates and formerly enclosed nerves cease functioning, and the delicate nerves of the brain are very likely the most susceptible to damage.
Why oh why test if the result is ignored .
Any test resut, it seems, can be interpreted to suit.
I was diagnosed as having functional B12 deficiency because I was not responding to my B12 injections and symptoms were getting worse, serum B12 was high, MMA was raised. This was a GP having her suspicions confirmed, and her diagnosis was confirmed by the testing lab. She told me that raised MMA was rare - she'd found only one other case in twenty-plus years, ten years previously. that is how she knew what tests to do, what to rule out (eg renal problems). I was then given 2 injections a week for six months -with an intended 1 injection a month as a maintenance dose for life.
Haematologists did 4 more MMA tests, all of which were raised.
They decided that this was just "my normal" - and advised my GP not to give me more than 1 injection every 2 months. Nothing else found: SIBO, Coeliac disease etc.
Range: 0-280 nmol/L
Results: 351 nmol/L, 364 nmol/L, 351 nmol/L, 393 nmol/L, 308 nmol/L
This was when I decided in desperation to self inject every other day.
Adult Inherited Metabolic Diseases consultants, two years after my 5th MMA test, did a 6th test : 205 nmol/L
It had dropped 100 nmol/L !
So raised MMA was not "my normal" then.
Perhaps not surprisingly, they could find no reason in my DNA for the previous raised MMA results. They apologised for being unable to help me .....
..but they had. They had demonstrated to me that my EOD self injections were proving to be effective.
My MMA levels weren't "high" - but no doubt would have been, prior to injections.
"Elderly people"are considered to have a higher "normal" threshold than 280 nmol/L.
Luckily, I was 56 when I first went to my GP.
[ MMA: methylmalonic acid:
this links with B12 in the bloodstream to continue the journey to cells/tissue. With little or no B12 to link with, it can continue to build up in the blood and can reach very high levels if B12 deficiency goes undetected. Once B12 injections are started, MMA should rapidly reduce- and certainly would be expected to be back to normal range by the time the 6 loading injections are completed.]
So glad you got a 6th test.
That must be quite unusual.
But as you say evidence your b12 regime working .
On paper
and a blood test.
Surely cannot be ignored by medics.
Yes, I think highly unusuaI. I doubt that I would have had the four MMA tests from Haematology- if they weren't trying so hard to dispute my GP's "functional B12 deficiency" diagnosis - these were after all the people who, on first appointment, warned me that B12 was highly addictive, toxic and carcinogenic.
They also wanted my 2-page copy of symptoms for their records and took quite a bit of blood.
Later, they referred me on to a neurologist for electric nerve testing and a brain MRI, for SIBO testing and later suggested to my GP that I be referred to the Metabolics consultant. Perhaps because of my GP's detailed notes, my symptoms list - or a lack of any evidence that this could be something else. Maybe all three.
After Haematology advised her not to give me more than 1 injection every 2 months, I don't think my GP was all that surprised when I told her that I was going to start self injecting. When she asked when I was going to start, I confessed "yesterday" !
At that point, I was still struggling to get healthy enough to return to my job.
Lack of any DNA evidence found to support diagnosis of a functional problem getting B12 to tissue/cell level would not have helped my GP to help me. If one had been found, recommendations would have been to administer two injections a week for life - which is about what I need to prevent worsening symptoms.
No, one test did it, but I think I've heard that someone has had to have more than one. Mine was 98.00. The base was 0.0-0.1
Really interesting thread. I don’t really understand pernicious anaemia at all - I have had gastritis for many years, and without B12 supplementation (just on multivitamins) my B12 levels tend to hover at around 162ng/L (ref 174-1132). I was found to have a functional B12 deficiency in 2021 (high MMA, but normal total B12 (as I had been on max prescribed cyanocobalamin from gp prior, for 2 months).
But, I also have gastric parietal cell antibodies, Anti Nuclear Antibodies, but I am negative for IF antibodies. I also have another autoimmune condition.
So apparently I don’t have pernicious anaemia; but with gastritis and GPC antibodies / ANA, doesn’t that mean I am likely to have problems absorbing B12? Why do IF antibodies get a diagnosis of PA, but GPC antibodies don’t? Surely GPC antibodies means that there is less IF produced (is this right?), which will reduce absorption?
I remember reading somewhere that a cohort of older PA patients were all tested for functional B12 deficiency, and a proportion of them were found to have both - so I don’t think it is an unusual situation to have both..
If anyone can shed any light on this for me, I would be really grateful!!
Having a negative Intrinsic Factor Antibodies test does NOT mean that you don’t have Pernicious Anaemia. About 50 % of P.A. patients get a negative test . Symptoms are the most important consideration in diagnosing the condition This is acknowledged by doctors who know about P.A. Unfortunately very few doctors have good knowledge of PA.
Hi, I am in a very similar situation. I have tested positive for parietal cell antibodies and I also have three autoimmune conditions. For two years I’ve been experiencing tingling in my hands and feet, telling the doctors about my symptoms of headaches etc. B12 has been between 135 and 246. I’m 25 and struggling with fatigue and muscle weakness. They still try to say that they don’t know it’s pernicious anaemia and won’t prescribe injections, one doctor today tried to suggest I had a trapped nerve in my spine…literally feel like I’m at a wall. Like you say if you have the antibodies that destroy the parietal cells, who cares about the intrinsic factor antibodies because you’re going to have less intrinsic factor whatever because it’s produced by the parietal cells that are being destroyed….makes no sense.
Thanks for this. I think there are confounding factors in my case (the persistently high MMA), which means it is assumed to be a functional B12 deficiency (rather than both things).
It was a (very well respected) haematologist who ran the recent IF AB test, and who said that there was no evidence of an autoimmune cause for the B12 deficiency / high MMA. But they did not have access to the previous results for GPC AB and ANA, but I had told them about the results. So, a case of falling through the cracks again!
Re: symptoms, I have gastritis symptoms, plus fizzing in both legs in wellington boot area, visual issues (glare / halos etc), tinnitus and muscle weakness. But I suppose it will be the same for a functional deficiency too.
Is it important to ‘bottom out’ whether I have non-IFAB PA as well as a functional deficiency? Ie for screening of things like stomach cancer etc? And how would they do this - would I need a camera type test to look at guts / take a sample to see if it is atrophic? Or is there a less invasive test that can be easily done?
Or does it not matter, so long as I get the hydroxocobalamin injections anyway??!
Many thanks 
I would recommend self-injection since there seems to be a concerted action in many GPs surgeries against treating Pernicious Anaemia patients with B12 injections. It’s imperative to treat your symptoms asap with B12 depot injections Depot= Hydroxocobalamin . Just B12 = Cynocobalamin
I will send you information .
Thank you so much
My sister tested negative for PA, her doctor has no clue it is not one & done OR don't assume it is not PA. Her doctor before this one would take her off shots every time she was back in the normal range. And then it would of course fall again. Shots again. Rinse and repeat. I believe my sister's case - years of okay good now and then drop - went on so long that there are issues that might never be resolved.
And then they closed down shots during the pandemic - mine didn't - and when they opened back up they decided they were only taking PA patients. Everyone else no more shots for you!
I give them to my sister. Her doctor found out and she freaked out. Yes this is where you can both sign & laugh. The audacity of her reaction. All "Is she a nurse?"
So craziness lives across the pond as well.
Great that your sister can get the B12 injections she needs from you . She needs to self inject really , to relieve you of that task . So you have the same problems in Canada as we do in the U.K. ! I have connections in Germany , where B12 ampoules are an over the counter item in pharmacies . There doesnt seem to be the problem there with getting B12 injections from one’s GP .
One needs to keep B12 high when you have P.A. It cannot be overdosed ,which is great to know . . You are doing a grand job for your sister - I award you this medal 🏅! Best wishes …..
I am trying to get her to self-inject, mainly because I think she would do much better on a tighter schedule. But so far, nope. I will keep trying.
To those reading and are thinking about their choices -I started to self-inject almost from the very beginning, and it was a great choice. It has made things much more peaceful.
But we are blessed here with cheap & easy access to cyanocobalamin. I realize it is not always so easy and financially doable in other places.
I’ll send you the information regarding self injection that I often send to U.K. members . We only use single use ampoules here , because of the danger of contamination in a domestic setting , we use Hydroxocobalamin, but I know that Cynocobalamin is very good also . I see that Canadian pharmacies now have single use ampoules .
I am in Scotland. I had IFAB and PCAB. Both positive
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