I'm a 43yr old female in the UK and I’ve been treated with B12 injections for Pernicious Anaemia for the last 20 years or so. However, because I don’t have a definitive diagnosis on my record (Intrinsic Factor negative) the treatment has been sporadic. Whenever I’ve changed surgery due to a house move or there are staff changes within a surgery I’m registered with, it seems I always have to start at the beginning and fight to keep the 12 weekly injections.
In recent years I’ve been seen by the same nurse who eventually didn’t bother taking bloods prior to my B12 injections because every time she had done so previously, my levels were so low. She said this confirmed I wasn’t ‘loading B12’ between my appointments and I could take from this that I do have pernicious anaemia and had received a false negative result. That said, it seems no notes to this effect were ever put on my records.
I now have a new nurse. She’s seen me a couple of times to inject without issue, but today she was quite curt and queried why I was having these injections. I explained that I likely had pernicious anaemia because all other avenues for low B12 had been explored and ruled out. She told me I didn’t have it because my intrinsic factor test was negative and my last blood test gave a B12 reading of 1000. She did give me my injection as there was no time for bloods to be done today but she warned me that in 12 weeks’ time they would be doing bloods and getting the results before they would provide any further injections.
To be honest, I didn’t challenge her because I was so upset at the thought of having to go through everything again and I was just glad to get out of there. It was only on the drive home I realised the blood test she was referring to was taken in regards to another issue on the 18th July and I’d only had my B12 injection on 10th July – so surely it was bound to be high? I’ve recently made a complaint to the surgery about another matter so I can’t help think this sudden action is linked, but I really don’t think I have it in me to go through all of this again to secure these injections. I’m at my wits end.
So is there any test I can pay for myself to try and determine once and for all that I have pernicious anaemia? I’m guessing there’s not, otherwise lots of us would have much clearer answers! But is there anything aside from the Intrinsic Test that would at least add to the evidence that PA is likely? Is there anything else in my blood results that would support it or anything else I can do to prove it?
I’m just so confused as to why they seem to fight me on this every few years when the symptoms I suffer without the injections are so severe. Any help you can offer would be hugely appreciated.
Thank you
Kacey
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Kc1199
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I can't really help, other than to suggest just being stubbornly persistent in asking for what you need. Even if it takes years, and even if one change of staff can wipe it all out.
It is a bitter irony that people with conditions where fatigue is a core symptom are having to expend so much energy on just being heard.
Thanks for your response Nackapan Sorry to hear this has happened to you. More than once too. You've shared lots of useful information which I really appreciate. Nothing else has been found to treat over the years. Within the last month they've diagnosed gastritis after an endoscopy but negative for H Pylori and Coeliac after biopsies.
As I understand it, gastritis is a symptom but they don't wish to investigate the cause (I don't use NSAIDs) I have just been put on medication and that's the end of it.
Nurses shouldn't pretend to be doctors. The decision shouldn't be hers, should it? If she refuses to listen, why not report her? We shouldn't be doormats to this kind of unprofessional behaviour. We shouldn't have to live in fear and worry about maltreatment all the time. Her behaviour is unprofessional, period. Sorry.
I got fobbed off by two doctors before a nurse practitioner doing a routine review listened to my symptoms and decided I needed a B12 test. So doctors are not necessarily any better! However, it's true that in this case speaking to a doctor is one option.
Thanks for your reply. No, I don't think it should be her decision but it doesn't seem to stop them at my surgery! She certainly was unprofessional and I'll be sure to escalate.
I moved drs and had a nurse text me saying I needed my B12 checking as the last one I had was high . I hadn’t to my knowledge had one in the previous 2 years she stated . This sent me into a state of panic. I made appointment with dr who totally understood and put on my notes not to test and continue. I did take my letter from consultant . Good luck I SI as well now so more control .
I know there are MMA and homocysteine levels that can be checked too as the B12 and antibody tests are by the manufacturers own admissions extremely unreliable. The higher the MMA and homocysteine then the more likely you are to be PA. At least your nurse seemed to know what B12 was-my daughter’s nurse (who was also the practice manager) asked me what B12 was as she was drawing up the injection and she wasn’t a spring chicken either! These things just erode trust in NHS and their supposed expertise. You are also extremely fortunate, though I know you won’t be feeling it, as in our region there was a blanket ban imposed on B12 injections so even with a PA confirmed diagnosis with positive antibody test my mum was given B12 tablets!? Scandalous! As a PA sufferer you are probably better educated in this than your GP’s nurse-sad but true.
Thank you, I will be sure to look into those tests, that's really helpful. I'm lost for words regarding the experiences of both your daughter and mum. Shocking! Yes, it's a sad state of affairs when the medical staff are totally ignorant of the facts.
You have my empathy but you must point out the facts. that retesting bloods is pointless once on therapy because understandably levels will be high. Tests for PA are often inconclusive so they can not and should not rule out PA. There ignorance astounds me and makes me very angry.
Have you spoken with your Gp ? Point them to guide lines and explain if your health declines you will be holding them responsible for stopping your life saving medication. I'm afraid you have to be firm.
Ha! You're not wrong! That's good advice, thank you and now I've got over the upset and annoyance of being this whole cycle again, I'm ready to fight it.
It's unfortunately very difficult to get to see a GP at my practice but that's my next move.
You can wait weeks to see a damned Dr, year or more to be seen by a consultant, wait months for a scan and it takes 10 weeks to get a consultation letter out !
What the hell is going on - as if we dont know but 🤐.
It seems to me that, if your serum B12 levels are low every time you have been checked, prior to "allowing" you another injection, you are being undertreated for your condition. I would certainly ask for a copy of these results as they argue your case for you and in fact point to a need for more, not less, injections.
An injection every 2-3 months is already a recommended maintenance dose, but GPs should be attempting to give you as much control over your symptoms as is possible and we are individuals. For this reason, a daily symptoms chart or diary can be useful: the aim being to pre-empt cyclical deterioration. Why suffer ?
Folate, ferritin, vitamin D and thyroid should be being monitored. But not your B12, not after injections. Not if the injections are being effective in controlling your symptoms:
My serum B12 was rechecked - along with MMA - because my GP realised that I was still deteriorating despite injections. My B12 was by then immeasurable (over 2000 ng/L) but my MMA was raised. The link between B12 and MMA was not happening properly - my B12 was not able to reach cells and tissues in sufficient quantity, so both B12 and MMA were amassing in bloodstream and going nowhere useful.
This meant that she could, having already ruled out renal problems, be confident in her diagnosis of functional B12 deficiency, confirmed by the testing laboratory. She then requested 3 injections a week (every other day: EOD) and never tested my B12 again. There was plenty of resistance from some of the nurses, and in fact I never got more than 2 a week -but my GP could see that the new regime was evidently effective -so she requested that it continue for another three months.
In the end, I had to self inject to retain all the gains I'd made, and she suggested that I ask one of the nurses for a teaching demonstration. [They looked horrified!]
NICE guidelines advise against routine retesting of B12 after treatment has started. The new guidelines will be published early next year, but the draft is available online.
Since the intrinsic factor antibody (IFab) test can, as Nackapan said, only identify about 50% of those who do have PA, it cannot be used to eliminate PA as a possibility.
Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three IFab tests before getting a positive result. But many GPs would have mistakenly ruled out PA on the first negative return.
Your case seems a simple one:
Your low B12 results prior to the next 3-monthly injection mean you are having to deteriorate before B12 is being replenished. A daily symptoms chart would back that up. This cannot be the best treatment regime for you. You need a copy of these blood test results.
Your1000 reading 8 days after an injection can be disregarded completely, especially when on a 3-month regime. NICE guidelines already back this up.
Your IFab negative result cannot be used to rule out PA. NICE guidelines already back this up, too. There is no Pernicious Anaemia test.
You have had tests to eliminate any alternative causes for your B12 deficiency.
You should not be having to justify your 20-year need for B12 injections;
not to a new practice nor to a new nurse, not to a GP who has not consulted the guidelines and certainly not every time you are (over)due for an injection.
The medical evidence is already there in your file.
We as a family now self medicate for B12 having faced lockdown and having the GP practice and Health Trust that we do. I have discussed this with my ‘trusted’ Dr and he/she shall remain forever nameless. They checked my source and already knew my capabilities and concurred that under the circumstances that they would do the same-though would never admit to that if asked as they wouldn’t be the first doctor in our region to be threatened to be struck off over B12 administration. Sorry state of affairs when the computer says no and the doctor has to obey!
Wow, staggering that you and your family have to do this. Appalling that you have been put in this position. And so bad that your GP's hands are tied. I despair
Summary: Highlights the limitations of B12 assay results for diagnosing B12 deficiency and suggests treating based on B12 deficiency symptoms (clinical presentation) to avoid irreversible neurological B12 deficiency damage.
Huge thanks to everyone for taking the time to respond. The help and information you have all provided is fantastic and I'm sure will get me the treatment I need. Thank you so much. This forum is wonderful!
Hi, I haven't in all honesty but that's mainly due to the fact I wouldn't know where to start! The idea of physically SI doesn't concern me, more the logistics. I did think if I get nowhere with this latest round of fighting it that SI would be my only option
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seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
About German online Pharmacies. — If they follow pharmaceutical rules rules,they are not allowed to supply U.K. with B12 ampoules! 
