I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs?
I am beginning to doubt myself now and worn out because all my reading points to the fact that afabs should trigger B12 treatment. But GP refusing
Thank you
If you have Pernicious Anaemia symptoms and have tested positive for Intrinsic Factor Antibodies , you must receive loading doses of vitamin B12 , and subsequent B12 injections at a regularity that keeps the P.A. symptoms at bay— FOR LIFE . ASAP . No question about this . You must write ( not speak ) to your GP with a copy to the surgery manager asking for injections ASAP. Do state that delayed/.neglected treatment can lead to irreversible symptoms . If still no treatment , tell us and. further action will be necessary .
Thank you Wedgewood, I have written to both the surgery and practice manager with all of the relevant references attached to no avail. Would you please advise what I can do next?
As a member of PAS , you can get help from the society. So do get in touch with the society , and explain. your plight . You can phone at certain times . Refer to the PAS site for times .
Thank you, I called PAS, they suggested another letter to the GP asking him to explain. He has not replied to any of the previous requests. Can I ask if the presence of the 2 types of antibodies that I have, IFab and ap in themselves are sufficient for a GP to initiate treatment? Surely they mean I cannot effectively take up B12 so even in the absence of symptoms I should be offered B12?
Should I go the NHS ombudsman?
You haven’t mentioned any symptoms . . If you have P.A. you will have symptoms , otherwise , why would you have taken an Intrinsic Factor Antibody test ? A positive IFAB test is proof of Pernicious Anaemia. I’ve never heard or read anything to the contrary .(Whereas a negative one is not proof that you don’t have P.A.. )
Have your test results to hand and definitely complain to the NHS ombudsman
Health Service Omsbudman — 0345 015 4033
Monday-Thursday 8.30–5.00pm
Friday -8"30 -12pm
They will certainly have advice for you . Best wishes .
The anti parietal test was done first at an allergy clinic following gastric and other allergy symptoms, when it came back positive, the full blood count, MMA and IFab tests were done. I asked for the last one as I noted that I had a lot of the B12 deficiency symptoms. I have had symptoms for a long time, the tiredness, anxiety, sighs, depression. Of late buzzing legs especially at night. Had various tests along the way that only confirmed my thyroid condition. Xray was done for the breathlessness, reffered for my depression/ anxiety but not yet heard back from them.
It's reassuring to hear that I am not mad, that I have not got it wrong, I will contact the ombudsman on Monday as I have no where else to turn.
Scientist's persepective, not a medic.
Your MMA is in range because your B12 is in range. It's perfectly possible to have PA [treated] and have normal levels. In fact, that's how it ought to be once treatment has been started. An abnormal MMA result would confirm that there's a B12 problem. The positive IFAb result won't go away. PA has to start somewhere, and once IFAbs are produced, that ought to stop dietary B12 being absorbed. That would mean you're running on stores.
The advice from others on here makes it perfectly clear what ought to be happening.
Good luck.
Thank you Flipper, I was just reading old posts regarding IFab and surfing the web to see if I could find anything, everybody except my GP agrees that it is PA.
However, a friend of mine did the Superdrig extended test for B12 deficiency, she asked Superdrug if IFabs are diagnostic for PA , the Superdrug GP advised her that in 3-5% you can get a false positive for IFab. Hmmmm!
I am keen to get this resolved and will take it to the ombudsman to arbitrate.
I have, through PALS, requested the gastro consultant to advise my GP urgently. I asked that the gastro contact me directly to advise of his actions. If its the same story, and he also says its not PA, then the ombudsman will be called in.
I checked the cases previously bought to the NHS ombudsman (available on their website) but could not find anything to do with PA or B12 deficiency, I was quite surprised that there was nothing given the delays in diagnosing and treating B12 deficiency and the damage that can be caused if left untreated. Would this be a route to raise interest in the subject and the profile of B12 deficiency?
Anybody have any experience of dealing with the NHS ombudsman? I have been so beaten down, I'm wondering if anybody can or will help (notwithstanding the support from the forums off course). Do any of these organisations have any teeth? GPSs seem to be a closed circle that gathers in to protect their own except for the noble few that are willing to consider and accept other possibilities but who are then ostracised by the rest of their profession.
The scientist's perspective, not the clinician's persepective. Looking at the statistics.
Superdrug's GP says it can be false positive in 3% to 5% of cases. However, we're well aware that it can be false negative in around 50% of cases. It's not a perfect test by any means, but if you've got a positive result, then there's a one in 20 to one in 30 chance it's a false positive. However, a negative has a 1 in 2 chance of being a false negative. In the presense of other autoantibodies [parietal cell Abs] then it wouldn't stand up to close examination. 'Positive is' 95% likely to be positive, and that's good enough for me. Better to treat and stop things developing, rather than not treat and then try and fix it when it's happened. But maybe that's my simple mind.
Personally, I'd be wondering if there's a more sympathetic GP in the area, but I really can't advise you on that one, and I've probably already said too much.
Good luck.
Depending on the testing assay (testing method) used by your physicians lab, it is possible to get a false positive result for intrinsic factor antibodies if you had a high level of b12 in your blood or had very recently injected b12. Other than that if you tested positive for intrinsic factor antibodies, you have PA.
Thanks Jimmel , my total B12 was 364 so the bottom third tier of the range, I had not taken any B12 at the time of testing, it was maybe 3 years ago I had bought and taken the sub lingual stuff but not recently at all. They don't do active B12 in my area- would you say that's a high B12?
...and with the positive anti parietal abs too would that not be sufficient to confirm PA?
Thanks FlipperTD, I only just noticed your reply, apolgies notification only just came through for your reply. That's what I'm thinking! Seems its a losing kinda battle , if its negative you dont have PA and if its positive you also don't have PA according to certain GPs.
I plan to change GP over this but I don't want to leave without him giving me a response. I don't want to give him an easy out or say I am no longer his patient so no need to reply. For the sake of other who may not be able to deal with such matters I want that he is told the correct way of dealing with this. It seems so wrong and I just don't understand why he would be acting (as in not acting) in this way.
With the testing that is available for diagnosing PA you are as positive for PA as anyone is going to get. With having a b12 in the lower third of normal range your intrinsic factor blocking antibody test should not have been comprimised by your b12 level. Based on the research I have done regarding intrinsic factor testing, I would say you have at least a 95% likelihood that you have PA. I am not a physician or researsh scientist, this is all based on my own personal research. I cannot understand why your physician is not seeing this. I believe you need to consider a new physician. Good luck to you.
Thanks Jimmel and all those who replied. I will try the HDA Patient Care charity tomorrow whilst I await the gastros contact. Best of health to you all.
Good morning all, the gastro has now got back to me, he tells me my intrinsic factor abs test is only 'weekly'positive, and as folate and B12 are in range and MMA is negative that I do not have PA but he stresses there is every liklihood that I may go on to develop PA due to my auto immune history. As s result he has cancelled the scheduled appointment as he says he does not now need to see me. This is a hospital consultant, my GP said he didn't know, 2 locums at the practice also ssid not PA.The NW London Outpatient Pathwayfor B12 deficiency clearly states that you can have B12 above range but if you have symptoms and/or IFAB you should be on lifelong injections.
NHS ombudsman is useless, as they allow the GP 6 months to resolve a complaint, if I still disagree with GP I must write back to the GP to say so, he then gets another 6 months to reply and if I'm still unhappy after the second reply from the GP that is when I can go to the NHS ombudsman. That's if I'm still standing or have the gumption, /energy /wherewithal to go through with it.
So folks, seems even positive Ifab and anti parietal cells will not guarantee a diagnosis of PA .
Any ideas on what I can do next? While I can pay and self administer B12 I cannot afford any investigations for symptoms of PA such as endoscopy for gastric monitoring, neuropathy etc.
Parietal cell antibody test
Intrinsic Factor Positive
Intrinsic factor antibody test
Negative Intrinsic Factor & Parietal Cells
INTRINSIC FACTOR ANTIBODY positive result
