I (66yo female) was started on B12 injections in 2018 because I was below range on my B12 results and I had numbness and tingling in my feet. Tests for PA came back negative. (If it's relevant, my mother had PA). Subsequently, I was told that the numbness in my feet was caused by dural ectasia, but that as it wouldn't be doing me any harm, I should continue with B12 injections.
All was fine until I moved house and the staff my new surgery have been told that B12 injections must be given as slowly as possible. Boy can they drag it out, it's like being tortured! As a result I stopped having injections. The last one was in Dec 22.
This year my serum B12 was 380ng/L at the end of March but fell to 255ng/L in mid September. I mentioned it to my GP who said that it wasn't low enough for him to resume treatment.
In the hopes it would help, I took a 1000ug supplement of methylcobalamin daily for six weeks and have discontinued the PPIs I had been taking.
My symptoms are fairly nebulous, mouth ulcers, depression and anxiety, tiredness and palpitations. In addition to these I have a whole load of neuro symptoms but because I have spinal problems I can't be sure of the cause. My gut feeling is that I need to go back on injections.
I'm scared of how much they hurt me and my hands are too shaky to self inject. I think first off I need to get tested again to be certain there is a problem. I stopped taking B12 tablets at the beginning of December, how long should I wait?
What are the current NHS rules on B12 injections? Might my husband be able to do them for me if necessary?
What tests should I ask my GP for, and if he declines, where else could I tested?
Written by
ABC852031
To view profiles and participate in discussions please or .
If you were previously on injections for an absorption problem then you should not have stopped. Treatment should not be dependent on test results.
Even if you hadn't been on injections the drop in levels between the two tests is significant even given the 20% accuracy of the test so is indicative of an absorption problem and given your symptoms, your GP should be starting you on injections.
In the UK it is illegal to supply injectable B12 for medical purposes without a prescription. There is a humanitarian agreement that allows patients to source medication from outside the UK if it can't be optained in the UK but this is for personal use, which extends to members of the same household.
B12 can be injected both subcutaneously and intra-muscular. It is possible for someone other than a medic al professional to be trained to give injections but it is a bit hit and miss whether a particular GP practice will agree to this and allow patients to do their own injections.
It's that "if" which I'm struggling with. I was diagnosed with low B12 but it could have been PPI or anaesthetic related, rather than an ongoing absorption problem. My reasons for stopping the injections were 50% cowardice and 50% self-doubt.I only got injections in the first place because I made a fuss. All the time I was getting injections I felt like a fraud. Both my mother and my husband had/have PA and I felt like I probably had just jumped on the bandwagon. I wasn't particularly aware of feeling dramatically better once I was getting injections. There was no concrete evidence of benefit although I did feel that the depression lifted, the palpitations and chest pains eased and my skin improved.
I suppose I do have some sympathy with my GP who would want scientific evidence before re-starting injections, which is why I was asking about testing.
I am very interested in the possibility of sub-cutaneous injections. Why are these not given to NHS patients as a matter of course if they're easier, less painful and equally effective?
Thank you so much for your help, it's quite a relief to get this down on paper and receive some informed perspective on the matter.
If your previous GP was giving you regular injections then it won't have been anaesthetic related, and a strong history of PA does rather suggest that it is that - they have found several genetic variants that lead to auto-immune conditions though I'm not sure if they have specifically found any relating to PA and even then there may be other circumstances that are needed to activate the variant.
Do you know why you were prescribed PPIs - if it was because of acid reflux then that could just as well be low stomach acidity as high and that would point to an absorption problem.
Unfortunately sub-Q use of B12 isn't formally licensed in the UK. This is probably the vagaries of the licensing system which relies on suppliers to apply for the licence. It does, unfortunately, result in many GPs erroneously consider that it can only be given by IM. If you feel forced down the road of sourcing your own B12 to inject yourself then you have the option of injecting subQ as well as IM.
The pain could be due to many things - not having warmed the vials properly is one - and generally taking it slowly does make the injections less painful. It may be the stabilisers in the solution that are causing the issue and switching to another brand might help.
It is unfortunate that you stopped the injections, though I have to admit that I stopped in COVID just because dealing with the NHS got too much for me. I didn't have any problems in getting them reinstated though afterwards so back to luck of the draw on GPs and what they know (or think they know).
I think the piece of evidence you have is probably the significant drop in B12 levels and the symptoms you have. Testing for IFAB is a bit hit and miss as the test gives false negatives 40-60% of the time - so a negative result is rather inconclusive. There is a test for gastrin levels which are constantly significantly raised in patients with PA but most GPs aren't aware of the existence of this test and it may only be available at a hospital so would need a referral.
You could try referring your GP to these guidelines produced some time ago which cover the uses and limitations of test for B12 deficiency and its causes.
They cover the fact that serum B12 doesn't tell the whole story - mention some other tests that can look at what is going on at the cell level - MMA and homocysteine - but they don't catch everyone. It doesn't mention the gastrin test because it wasn't around at the time.
PPIs we're prescribed for GERD on the assumption that my pyloric sphincter was malfunctioning because I have Marfan Syndrome. This is part of the problem, my normal is different from everyone else's and even different from other Marfs. Consequently whatever is bothering me, the medical response is usually "oh, that'll be the Marfan Syndrome". Or in other words, suck it up.
In reality none of us is normal and its a pity that many medical professionals aren't able to act as if that was the case. Whilst Marfan might have explained it, it wouldn't rule out something else going on.
Hi, I understand that you would prefer dramatic improvement on the injections to prove need (or not) to your doctor, after all, who wouldn't? But I think looking at what you have said here and previously on posts, that you have got as many signs as many of us see and that your gut feeling that you need B12 injections is correct. The palpitations is something I noticed for myself, with them coming back quite quickly without adequate B12, as well as mood and cognitive changes, plus the neuro ones. Mouth ulcers are a classic sign in our family. I don't think you are a fraud, nor that you jumped on a bandwagon. With your symptoms and conditions and your mum having had PA, it is likely that you are predisposed to malabsorption, even if you don't develop PA yourself. I am the 5th of 6 known generations with B12 issues but only the earliest 3 gens managed to get a diagnosis of PA. My neurologist suggested that a gluten issue which I'd found for myself (resolved years of skin issues and a tremor) might well have been at least partly the cause for my years of neuro problems, and I've since found it suggested that there is some cross-reactivity (molecular mimicry) between gluten and parietal cells, which could give yet another route by which those with coeliac, other gluten related disorders, or in fact any autoimmunity might struggle progressively with B12 absorption (as well as low acid and iron etc). Taking PPIs will just have exacerbated the problem. I honestly think that you will just make yourself worse by trying to wait for serum B12 to drop further - a decent doctor should know that serum isn't a useful guide for many of us. Mine was above top of range, but as oral etc did give me some benefit (or used to) a GP new to me suggested a trial of injections and I am endlessly grateful for that! As Gambit62 said, there are other tests which could be done, and you could ask as it may give useful information, but they can all be normal (mine were) and you still need injections. My surgery are hopefully about to show me how to do my own, and I'm sure that your husband could be shown, even if you have to do so privately. Best wishes.
I did try GF for quite a while, I still try to avoid gluten where possible. I suspect that most people would benefit from drastically cutting their gluten intake. I do remember when I had my loading doses, that mentally it felt as though the sun had come out. At the time, I thought it was relief because I'd finally won my GP round to my way of thinking. Now I'm not so sure.
I would suggest that a family member or friend give you subcutaneous injections. They are simple and painless. There is reputable tuition online and I suggest you find a retired nurse (as I did) to supervise the first shot. My last surgery IM injection was one of those long, drawn-out excruciating shots. I don't know what the thinking is behind this but I won't let it happen again!
Thank you for sharing your experience. My husband is so stoic about his monthly injection that I wondered whether perhaps I'm just not Victoria Cross material!
NICE (National Institute of Health and Care Excellence) published a new B12 deficiency guideline in 2024. I have some reservations about it but there are some good bits.
If your GP refuses to reinstate your B12 injections, might be worth asking him about the risk of SACD.
If GP says normal range serum B12 result means that SACD is not possible, search for this article to give them...it's a case history of patient who developed SACD due to B12 deficiency even though serum B12 was normal range.
Search for "Turner SACD functional B12 deficiency".
Has your GP got a list of all your symptoms especially every neuro symptom?
I used PAS checklist below and added extra symptoms at bottom of page.
Point 1 is about under treatment of B12 deficiency with neurological symptoms present.
Many UK forum members turn to treating themselves.
Some get extra B12 injections privately. Some try high dose oral B12 (1000mcg or higher) but this doesn't work for everyone (didn't for me) and some as a last resort try self injection (SI).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.