Distressed yesterday to hear my practice nurse suggest that, as my IFA is negative and my B12 now high (after 8 months of injections what else would it be?), I should just have oral supplements. I told him I had been vegetarian for 45 yrs and taken a B complex supplement with B12 intermittently all that time and it didn’t stop my B12 being below the minimum last year. I also told him I’d read that the IFA test is only 50% accurate. I think battle lines have been drawn up here. He’s angry. If they stop injecting I’m quite happy to SI - I’ve done it twice and hurt less than he did - but I would like to keep that GP contact and approval. I presume there’s no private test for IFA that anyone knows if that IS accurate?
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Dragonwalker
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I also had a negative test for parietal cells and told not PA. I'm still not sure. However been told an absorption problem like you and will be on B12 injections for life. They shouldn't have tested your b12. My doctor told me levels si high as it was done once . I simply replied I was not aware it being done and it was a waste of time whilst on injections. She said nothing
On the next consultation as she doesn't know what to do with me! She said have as many b12 injections as I need!!
I hope it removes for you and you get what you need
Anti-intrinsic factor antibody (anti-IFAB).The finding of a low total serum cobalamin level may be further evaluated by testing for anti-IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Tohet al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungaret al, 1967), i.e.,low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).
'Intrinsic Factor Antibody' (IFAb] tests are problematic. Some IFAbs are blocking, and some are binding; some are both. It's hardly suprising that one test won't pick them all out. The only reliable test we had was the Schilling Test. It was expensive, long-winded,unsuitable for large numbers and relied on the patient swallowing radioactive B12. Even then, it had drawbacks. It's no longer available for a variety of reasons, but it did work when used correctly. Sorry I can't be more positive.
1) Any vegetarian could still have Pernicious Anaemia
2) If taking B supplements and occasional additional B12 (self-injected ?) did not stop you becoming deficient, then it's possible that this is not a simple dietary problem (see 1 above !)
3) Any vegetarian could still (if aware of the dangers) have been consuming sufficient B12 through diet anyway: eggs, cheese, fortified "milk", fortified cereal (see 2 above !)
I've been a healthy vegetarian for most of the 40 years, and had no known B12 or any other deficiency until 2016. Then found to be B12 deficient, low in both ferritin and folate, and prescribed vitamin D because found to have osteoporosis of the spine. Suddenly not at all healthy in numerous ways.
I've been self-injecting B12 every other day since September 2017 -and still not there yet. I have tried all the NHS has offered me, and admittedly, I've been lucky and had the lot: x-rays, scans including MRI brain scan, physio, haematologists, gastroenterologists, dietitians, neurologists, SIBO breath test and electric nerve test, and B12 injections at the following rates: every 3 months, every 2 months, every month, 2 per week - although certainly not in that order. I found that every 3 months meant I got very much worse, and 2 a week was fine, then okay, then not so good but that it took 6 months to get worse again. This led me to believe that I could get better if I injected myself more frequently, so I did. I continue to get NHS injections every 2 months, and have told everyone along the way what I'm doing and why.
I've had my DNA looked at because I have continually raised methylmalonic acid (MMA range: 0-280 nmol/L) - which varies between around 350-400 nmol/L and for which there has been no reason found. Not since my GP diagnosed functional B12 deficiency which was confirmed by the laboratory in 2016. Because no- one else has yet found any other cause for this and my B12 deficiency-sounding symptoms, I'm going with that. There is precious little research on the subject except for Talbot and Taylor who suggest for functional B12 deficiency, "frequent injections" are needed. Bit vague, guys, but I agree absolutely !
Seeing an Inherited Metabolics Diseases consultant in August, who will hopefully have the DNA results that will give me some clear answers, even if my treatment plan has to remain the same.
Your GP is angry : because he is basing a medical treatment decision on an unreliable test, or because you knew that before he did ? Work out if he is willing to learn with you about what is optimum treatment for your condition- or whether it will take way more energy than you currently have. I have been disappointed by quite a few of the consultants I have seen, but trust my GP to be honest, make sense of incoming reports and results, but also to notice what is happening to me as some of my symptoms are quite visible. She regularly does blood tests but never tests my B12: she knows it's no longer where the story lies.
I wish you that level of support. Good luck, Dragonwalker .
PS: ALL of the tests above, including at least 5 MMA tests, were done on the NHS.
I've only ever had one thyroid blood test privately by post, because there are 6 tests instead of just T4 and TSH, which is generally what NHS offers.
Thankyou Cherylclaire. You do seem to have been having a tough time. I seem to be OK on 8 weekly jabs, which I had to fight for and get a mental health professional involved. I feel threatened now though as the practice nurse seems to think I should manage on tablets as I am IFA negative. I use patches and sub lingual drops for a week or ten days before a jab is due and self inject if I need to any that point. I take folic acid tablets as that was low. My ferritin seems to be ok. I suspect, as you do, that the situation for many of us is much more complex.
Strangely, the 2nd metabolics consultant said that, even if a reason was found for me to need more B12 than others because of genetic metabolism flaws, I would "only" be given 2 injections a week (which would, at least so far, not be enough) - but which was exactly what my GP gave me for 6 months, until I could no longer pretend, even to myself, that this was sufficient.....can you imagine how much I wanted this level of treatment to continue to work for me ?
They really don't know.
If I'd have realised that most of these consultants know less than my GP already knew, and that she is willing to learn about my individual symptoms while they still make insulting statements about "the euphoria gained from self-injecting", I really would not have gone down this route at all. I can only blame the arrogance of teachers (sorry, teachers, that might easily be just me) : I really thought I might still be able to put together a coherent argument to any one of several consultants, and change the status quo. Hahahahaha.
I hate injecting, I've had no professional help, I'm still really crap at it and put it off like a kid doing homework late on Sunday nights.
Euphoria , my giddy aunt ! Now and then, my first attempt is painless and blood-free - that's as euphoric as it gets for me.
Perhaps I should demonstrate in front of any expert who suggests this might be offering some sort of high/ addiction ?
As for you, don't accept anger from your practice nurse (not GP as I previously thought): when I was being given 2 injections a week for 6 months, some of the nurses didn't like this- the sensible ones googled it and realised that it was harmless and discussed it with me, the others kept complaining to me about how this can't continue/ feeling sorry for "my poor arms" when I had no clue whether I'd been injected or not because my poor arms had no feeling whatever. I discussed this with my GP- after all, the treatment decision was her's, based on expert knowledge - and she explained the treatment to them. Now I will book any of the nurses to carry out the injections. I do understand that this was an approach that they had not encountered before, given that anything not "every 3 months" seems strange, but really not my fault that I'm different. They still forget that I'm now on "every 2 months" and keep giving me a 3-month date. Leads me to believe there's only one truly accepted pathway: I'm now on 1 injection every 2 months because no reason can be found for giving me more than that when bloods tested.
Symptoms tell a different story, but I have to live with that or (ineptly) self-inject as needed to manage my symptoms...my choice, but not much of one !
I'm glad that you feel okay on 1 injection every 2 months but a practice nurse's opinion should not alter your right to access that injection. It would cost me about 90p, all told. If not a financial decision, not either a professional one. If all IFab tests are equally rubbish, what on Earth is the basis for this decision ? Can you not see your GP ? Didn't think a nurse could alter prescribed treatment alone.
Fbirder's reply has the response you need to quote to GP. Wishing you best of luck.
PS: don't think I'm having a tough time - many symptoms less severe, some gone , seeing gradual if not entirely reliable progress. Getting there and happy with that mainly. Sometimes frustrated with pace and limitations, absolutely hate being physically weak.
I think anger at the possibility of being proved wrong is at the root of my practice nurse’s reaction. And probably the doctor’s too. People like us get a reputation for being ‘difficult’ patients. As I said, I did have to get a mental health professional involved to get my injections changed from 12 weekly to 8. The overlap of fatigue, mental fog and anxiety was making it difficult for my therapist to assess how I was. When I say 8 weekly injections keep me fairly well, I mean that they (almost) get rid of the neurological symptoms like pins and needles, tinnatus and burning jabs in my feet. I still get the fatigue and brain fog - and occasionally lose my balance and walk into door surrounds. And people.
As you say, there are obviously auto immune issues here for both of us. When I was about 19/20 I was prescribed a selection of anti schizophrenia drugs though it was admitted later I had never been schizophrenic but just depressed. My immune system was never the same after. I’ve had ME and get relapses whenever I have a virus or get stressed (suffering badly at the moment as my partner has just died) and have recurring full body skin lichen planus as a reaction to most prescribed medecines. Thank god the B12 doesn’t set it off. I fully expect my immune system to kill me one day.
As to getting a ‘high’ from SI, that gave me the first laugh of the day. The only high I get is ‘glad that didn’t hurt too much’ and the expectation of feeling gradually better in the next 24 hrs!
Really sad for you that you have lost your partner, Dragonwalker .
You have had to battle through a lot from a young age both physically and mentally.
It's no wonder that your mental health therapist is having trouble untangling what is more easily resolved by better B12 treatment, what is as a result of strong drugs when young, and what is a deeper set of issues.
Many people here have had misdiagnoses of either ME or depression (or both probably) when these were B12-related symptoms, so having these as separate issues anyway would be difficult to monitor now, which makes life particularly difficult for you I would imagine in determining what to ask for/ how to self-treat or improve. You must have to listen really hard to your body - shame that your medical professionals don't seem to be getting that.
I'd concentrate on getting a supportive GP onside- the nurse will follow her/his instructions (perhaps grudgingly, which might mean no chance of any improvement on technique !).
Have you read Martyn Hooper's book ? ('What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency') He had to be IFAB-tested three times to get a positive result. When it's positive, it's positively right (95+% accuracy). Which is why, as you can see in fbirder 's reply to you, even medical professional guidance is advising GPs not to take negative results at face value. (Although I would think you would need to have an extremely onside GP to put you forward for testing repeatedly!)
….and while I'm busy putting off my next "euphoric" injection, I'll have a Google of "lichen planus" !
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