I'm really not sure about this. Ideally I'd like to disclose this but I'm not sure of the response. What do others do?
Do you tell your GP about self inject... - Pernicious Anaemi...
Do you tell your GP about self injecting B12?
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Caradoc1a
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I told my doctor and he disapproved. As a result , I don’t get any more B12 injections .
my GP knows. No problem
My retired family physician taught me how to self inject B12 in my thigh. I’ve been doing so for around 20 years. I live in California. I no longer use my health insurance to obtain B12 because they give me only 1 tiny B12 vial a month. Instead I order from a Canadian Pharmacy and am able to obtain a 30 ml bottle. I keep everything in an old metal lunch box. I SI cyanocobalmin and most people prefer methylcobalmin or adenocobalmin. I do well with the cyan.
Thanks for the reply. It's great that you have system which works for you
May I ask how often you SI and do you rotate the injection site in any way? I am going to be doing IM into thigh, but wonder if frequency will be an issue in one location. At the moment I am getting weekly prescribed jabs into alternating arms, but would like to double frequency by SI half way between. I am glad you are doing well. Best wishes
Of course, I SI evvery 4 weeks and sometimes sooner if my body is letting me know I need more. I switch from thigh to thigh. Additionally, I take an oral B12 with methycolbalmin and adenocobalmin every day. I don’t know if that really helps as I am told I am positive for intrinsic factor (meaning I lack it) but I like to think it does. I obtain that from Amazon. Hope this helps. One thing I have noticed that I have not noticed here, is that in the UK physicians don’t like to give B12 when the tests certainly show otherwise. I find this odd. I have never had a problem like that here.
Thank you. Once I get started I'll try to swap thighs, if I can reach round! I'm still using oral and sublingual daily and patches now and then (more for the other Bs contained), but they no longer work as well as they did, hence being glad that a GP finally suggested a trial of injections. I agree about UK doctors, it is hard enough to get treatment with an obvious blood deficiency, never mind a cellular one. Best wishes
The area on the thigh ( Vastus Lateralis muscle where it comes closest to the surface ) is much larger than that available at the top of your arm . Look up that muscle on Google .
Thank you! I am using that muscle, and have found that I can manage either side. Made the mistake of telling the nurse, after being asked, that I'd done two SI (just to make sure that I could manage it all physically as well as actually sticking a needle in myself- didn't want to have to do it for the first time when away from home or already feeling ill), and she and GP refused to do my injection. Hopefully tomorrow will go smoothly for my next prescribed one!
I had a prickly situation with my GP in the early days of my PA journey. With much protest and conflicting information provided by the medical system, I told him that I’ve had it , this is all so pathetic that I’m going out on my own and I will self inject. He wished me luck. Six months later I followed up with him and explained what I was doing. He was supportive in the end. With my pathology results reflecting my improvement, it opened up his thinking about PA. In the end, my self injecting was the best decision I’ve ever made.
Thank goodness he came round in the end. It is so tricky. The spine consultant I saw 2 weeks ago said he'd write his letter to the GP in a way to avoid upsetting egos. It is do ridiculous to have to consider this!!
That’s why I went on my own to self inject. I remember crying in neurological pain in his office begging for more regular B12 and he told that he couldn’t allow it. How pathetic is the medical profession that they’re not allowed to consider a patients needs first before anything else. The medical laws are out of sink with the needs of patients. I have not ever regretted going on my own, it’s the best decision I have ever made.
This is unacceptable to have a physician so bull-headed and stubborn. Grateful he was supportive in the end, nonetheless he was wrong to make you go through this without his support and participation.
He is supportive in theory I suspect. He once mentioned that he’s diagnosed other patients with PA and they’re happy with the once every three months regime. I emphasised that the current treatment for PA is insufficient and the system should be more flexible with the recommendations and offer more B12 if needed.
I wonder how many of those once every 3 months patients are supplementing on the quiet....
We told our doctor. He chuckled, and murmured ‘placebo effect’. We told him how carefully we had calibrated the required injection frequency, and how we had found that this could vary in periods of higher activity, such as on cruises, or at Warners. He looked thoughtful.
We have had no repercussions, but we have never sought NHS jabs since being erroneously denied them six years past. We plough our own furrow.
Right now, we are using Christmas/New Year as a further calibration point, and going more than a week without a jab to see how long we can manage, and also to note if the eventual jab correlates with improved welfare.
I’m just the carer here, but personally, I’m on my second pack of Epoetin Zeta, supplied by the NHS for weekly self-injection, sub-cut.
The irony is not lost on us.
Indeed ironic!
Yep, very ironic. I guess we are all benefitting from the “placebo effect”.
The daft thing is, a retired GP friend that I was talking with recently said that even if the effect were a placebo effect, it is still having the desired effect and is not harmful, so why not prescribe it anyway?
One of the nurses at the surgery asked me outright if I SI, as she said I was too well to be relying on three monthly NHS jabs and I said yes. Nobody else at the surgery has mentioned it, so I guess she didn't pass the information on. In the early days of my diagnosis, I begged to get more frequent jabs, but was turned down every time. I now SI twice weekly. If I am asked if I supplement between jabs, then I say yes. They assume I mean tablets, I don't elaborate. If I am asked directly if I SI, then I will say yes, but I don't go out of my way to tell the Docs. I am lucky that I have positive IF tests, so although they review my need for jabs yearly, they have never stopped them. But if they did, it wouldn't really bother me, as my present regime means that I can lead a pretty active life with just the occasional bad day if I've overdone it or am ill.
Thanks for sharing. It is crazy how this is being dealt with nationally.
Couldn't agree more.
Tracey Witty of B12Info would probably agree with you.
She's campaigned for years to get injectable B12 available over the counter.
b12info.com/a-decade-of-cam...
There was a UK survey some years ago of people who self injected B12.
Search for "UK survey b12 self injection" to find it.
I found it interesting to read their reasons for doing so. My understanding was that some were doing it because they felt their current level of treatment was unsafe.
Thanks - I'll have a read
I once saw a haematologist (for an unrelated pathology issue) and he wanted a recap of all medications and supplements that I have taken. He specifically queried my B12 treatment. He first asked, ‘why do you self inject, how often?’ Being prepared for my response (from past experiences with doctors) ‘that once every three months is insufficient for reversing my neurological symptoms and this current method is helping me significantly improve’. His response flabbergasted me ‘well firstly, you’re going to overdose and this will be more detrimental to your overall health, you have to slow down, it’s way too much B12’. Of all doctors I thought a haematologist should have been the best person to have been educated about B12, its importance to health and specifically, you cannot overdose!! I was totally shocked with his response.
With his follow-up consultation, the first thing he asked ‘have you reduced your B12 treatment?’ Being prepared again I said ‘yes I have to once a month’ still not satisfied he insisted that I reduce again and to go back to once every three months. In my head, I was fuming and ready to scream at him but, I quietly said that I would and in reality, I have continued my daily SC B12 injections.
How dare he tell me to reduce my B12?? From then on I’ve decided to lie to every single doctor I see, I would give them the lie that I do the once every three months treatment, they will never know the truth. Even with my last pathology referral, the doctor asked me to test my B12, and quickly told them ‘NO’, no need to.
When I have to consult with a doctor again, this PA-B12 condition is off limits to all. I am healing myself and doing what’s best for me and my body. I’m having significant improvements with my health and never again will I be gaslighted by doctors again.
Thank you for sharing. It's good that you have found a way which works for you.
I’m going to do this in future.
Last GP I saw told me I was dangerously high and overdosing. Wants me to stop for 12 weeks and test, I could be masking symptoms of something more serious underlying. I’m just into week 2 and tingles, dead arm, balance etc all returning. Aunt just had a rare platelet antibodies diagnosis recently so I am thinking I’ll stick it out this time but once that’s all tested il going straight back to SI when I feel like it 😂
Yes , but lying allows them to think that they are right , and they use your example to convince other P.A. patients that they should cut down on Self-injecting .
It's a very difficult decision I think. I thought long and hard about it. In the end I did tell them. I found it difficult to do - I felt scared as there is power dynamic. The GP was cool towards me - frosty! When I got upset after I'd answered her question about why I had decided SI, her attitude changed. She still won't prescibe B12.
I’m sorry that you got upset , but I can understand why . Thank God for this forum . You have somewhere to come for help and advice .
Very best wishes .
"Too well to be relying on three monthly" ?
How awful that a medical professional at the treatment end of this knows full well that the B12 injections she is giving out are at an inadequate frequency to give patients their opportunity to be well !
I told my GP the day after I finally started self injecting - so that she could not talk me round ! To her credit, she didn't. She told me to ask the nurses to teach me how to inject safely - they were not quite so supportive. No matter, I worked it out myself, with sound advice from here.
Much later, I had to see a new doctor, as I had increasing problems with heart arrhythmia and my usual doctor was on holiday. When he found out that I was self injecting B12, he visibly panicked and could not wait to get rid of me so he could tell someone !
Unsurprisingly, he wrote me a letter before my usual GP's return, telling me that my NHS injections were being stopped unless I ceased self injecting and accepted the frequency offered. I did not bother to reply and waited until my usual GP's return. We discussed both my 24hour heart monitor results (ventricular ectopics) and the letter. She said that nothing would change : she would still monitor my folate, ferritin, vitamin D and thyroid - but not my vitamin B12 as "pointless".
But things have changed. She left the practice.
I now do not know whether it is wise to talk freely to any of the other doctors - but honestly would not want to relinquish responsibility for my symptom control to anyone else. Neither do I want to lie, as I am willing to discuss my reasons for more frequent B12 injections than would be available to me long-term on the NHS. I want to be as well as I can be, not as well as I'm allowed to be on one injection every two months.
Which is "not very" - as was previously observed by my usual GP !
It's difficult isn't it. I didn't want to self inject as I find it so stressful. But now I do. I told GP practice last week. They won't support me with a prescription but at least they know and it's on my record.
...and hopefully (even if they do not agree with your frequency) will monitor your improvements - and continue to check your folate, ferritin, vitamin D and thyroid regularly. Not a huge ask.
Yep 🙂 - the Endo (who recommended B12 injections) is monitoring these in Feb. I asked him to and he agreed. Plus an iron panel. He's pretty good, although he was hoping to hand over the GP! I've been referred to neurology and GP is getting advice from Gastro about what tests they will do - SIBO and parietal cell AB. She has given me a form for IFAB test - which is the only other test she can authorise. I've been tested and negative for Coeliac Disease and H Pylori.
Good that things are moving on !
Some medical professionals seem to think that, because many of us are pushed into self injection, we must be addicted. Desperation to get better and get on with our previous lives never seems to occur to them as a more probable cause.
It sounds like you are on the right track with useful elimination tests. Hope all are aware that IFab is only going to return a positive result if antibodies are active when tested (only 40-60% of those with PA will get a positive).
Yes - thank you. I discussed this with the GP. Although, even in the test is positive, my GP surgery policy is to only offer 6 loading doses in 2 weeks and thereafter 1 injection every 3 months.
A policy that could only ever work if we were all the same - presenting at the same stage with the same set and severity of symptoms, and finding that we were all exactly as deficient as each other.
I have yet to read two similar posts here.
My GP recognised that I was not responding as expected to the loading dose of six injections and continuing to deteriorate when on one maintenance injection every three months. This was also noticed by my employer, my work colleagues, my students, my friends and family. The nurses told me later I looked grey.
Luckily, my GP wasn't so set on following a regime that was failing me, and contacted consultants for advice.
Trialling two injections a week proved so successful that she requested that it continue for six months. Again, all of those mentioned above noticed the difference. One of the nurses later admitted that she had looked up "B12 and toxicity" and found, as I did, that there was nothing to worry about.
Thank goodness your GP had the grace to rethink in the face of evidence! It's such a lottery.
Old school: go to the waiting room and call your patient, watch how they respond, how they look, how they are walking....taking in information before the start of the appointment.
This of course requires some continuity. Quite a brave act these days to request a particular GP - as it now seems ungrateful ! Hard enough to get a face-to-face with anyone.
This is a positive story about self injecting B12. A couple of years ago I told my doctor I wanted to self inject, mainly for convenience to avoid having to drive to his office. He was supportive and had of the nurses show me how to self inject. I recently had a yearly physical and mentioned that I was buying B12 from Canada to supplement my monthly prescription and he said "You don't have to do that. I'll prescribe whatever amount you need." So now I have a prescription for the amount of B12 I self inject. I know I'm lucky to have this doctor.
I told my neurologist consultant that was seeing me because my GP sent me there when she suspected MS. This was about a year after I first saw him and under a year after I started SI B12. He thought it a good idea. Eventually he retired and I stopped seeing any neurologists GPs still test my B12 blood serum, and always say it's too high. My reply is that it necessary as without it I get same symptoms I had prior to being sent for MRI scans.
Hi. I told my surgery and they withdrew my prescription! I had stocking and glove neuropathy and was letting them know it wasn’t likely to be linked to B12 as I was si twice a week. (Actually - it may have been B12 related as my folate and Vit D were low and it resolved when these were sorted - or I did wonder if my B12 supply was spoilt through getting too warm). As your replies show, the response from your GP is very unpredictable unfortunately - I think generally you’d want them to have full details but it’s hard to predict how it will go.
I can't understand why they withdrew the prescription as you had neuropathy. Just ridiculous.
GP told me last week that she wished they could bottle what was in B12 jabs because everyone loves them. “But it’s not the B12” she said, it’s whatever is in with it. “What? Saline?” I said, She gave me a withering look 🤦🏽♀️ if only she could hear herself 🤷🏽♀️
Good God!! Beggers belief
That truly takes the biscuit for ignorant, unreflective gp comment of the week! Surely if you have an iota of medical/scientific curiosity, you might do some research as to WHY?? Maybe because the patients you eventually dole it out to in such pathetically inadequate amounts are just so desperate...?
No 🤫
I mentioned to the nurse that I SI. She left the room B4 giving me my jab to speak to the Dr. Refused B12 at my surgery ever since. My advice, say nothing.
So my story is that initially I was very grateful to my gp( sadly now retired) who had blood tests including B12 done 4 years ago when I consulted him because of permanent fatigue. This was in 2021 post COVID and lock downs. I am 70 years old and thought it might just be down to long covid or my age. When the results came back my B12 was very low and my red blood counts showed that the cells were enlarged. He then ordered a coeliac test and intrinsic value test. The former was negative but I had a positive level of 114 on the antibody test. He immediately diagnosed Pernicious Anaemia and referred me for an endoscopy which confirmed the diagnosis. I had the loading doses, some iron tablets and then 12 weekly injections of B12 prescribed. So far so good. However there was very little follow up or information given to me regarding PA and all the ramifications of it. Subsequently I’ve developed what I now know to be symptoms caused by the PA. To cut a long story short I kept returning to the GPs regarding these symptoms and having read up on the subject I ventured to suggest that my injections be increased from 12 to 10 to 8 weekly over the last 3 years. Tbf the practice went along with the suggestion. Eventually my anxiety symptoms and back pains lead me to further research as I was getting nowhere on 8 weekly jabs. I discovered that very fortunately we live close by a B12 / Iron /PA specialist. I persuaded my GP to refer me privately to him( to keep them onside) and am now thankfully on a more frequent regime of Self Injections twice weekly. The GP is aware of this treatment as the Specialist sent her an explanatory letter in which he requested that they organise blood tests to monitor my iron. They have agreed to this which is good but I am very aware that the frequency of 8 weekly injections was as much as they were prepared to do although I have made them aware of the NICE guidelines. It turns out that symptoms I have suffered from for 50 years are probably all related to my PA which I’ve always had but never realised because my B12 was never tested until I was 66. My husband and I are probably far more genned up on B12 deficiency than anyone in the practice. How many others are being sent on wild goose chases of tests and scans and being prescribed antidepressants unnecessarily because no one does a simple B12 test ? I’ve not been back to the GP since apart from ordering the blood test so haven’t yet had any feedback on their views. .I do feel that it’s a huge topic for GPs to consider and could be saving them money in the long run especially if they taught sufferers like me to self inject as they do with diabetes patients. Sorry this is so long. It seems that throughout the General Practices in the UK knowledge on this topic is almost non existent from what I’ve read on here. I know I’m one of the lucky ones who could afford to be treated privately.
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