Telling your GP you are self injecting B12

I want to tell my GP and nurse that I am currently self injecting and all.going well. I'm frightened of upsetting them.and causing a rift as seeing others posts. My Gp has PA herself, but my IF test came back ok, although my gastro consultant and symptoms say otherwise. I would love to be open and honest and share my learning with them, anyone's thoughts or experiences?

[clivealive Forum Support]

Hi Hidden I'm guessing that if your GP has P.A. she will fully empathise with your self injecting.

I was blessed in that my GP fully supported the idea of my injecting at home (as due to age and diabetes I needed to go into self isolation) even supplying four sets of needles and syringes.

To tell or not to tell - only you can judge your own circumstance.

I wish you well

[Hidden in reply to clivealive]

I agree with Clive only you know your gp but we can honestly never tell how they’ll react to things,I thought I had the best gp in the world until I backed out of a colonoscopy he went ballistic said I was questioning his integrity after him referring me I was really shocked at his reaction he’d obviously had a bad day,I’d always thought we had a good relationship so think about it carefully Is all I’d say.ve no intentions of telling my new gp like you I don’t relish rocking the boat again.x

[Hidden in reply to Hidden]

Oh dear, do you mind me asking why you backed out of a colonoscopy? I have had 6 of them, first one potentially saved my life, I was working in a hospital at the time, and now my gastro consultant is my friend 😅

[Hidden in reply to Hidden]

No I don’t mind I had a couple of reasons at the time a) Mrsa was raging at our hospital and b) I knew it wasn’t cancer because he said to me sometimes because of waiting lists we have to as gps make slight exaggerations to get our patients seen quickly so don’t worry about the “c” word.

There was no way I was putting myself through that with all it’s associated risks when I didn’t need to,I went to my gp in Spain,he asked me a couple of questions about foreign travel etc ,I’d been on a Caribbean cruise ,did the stool tests,which U.K. gp hadn’t done,then told me I had hpylori,gave me triple therapy treatment and resolved it.this was about 15 years ago.

I’ve since had a colonoscopy in top London hospital last year With 2 biopsies which cost me nearly 3k it was the most horrible experience,the procedure itself wasn’t too bad although I still felt pain even with sedation, but the consultant explained it’s much harder with ladies who’ve had hysterectomies because of internal organs shifting, afterwards for days the pain was horrible so no I wouldn’t ever do it again.

Again I had no trust here which was why I went to London private and the consultant agreed they were sending me for the wrong procedures, ct scan had showed raised lymph nodes near the caecum they were sending me for a rigid sigmoidoscopy which was no good it didn’t reach to where the problem was and where the biopsy’s needed done.He was an excellent training consultant gastro and a lovely man I had no hesitation trusting him and even after this procedure was done the gps still wouldn’t follow his recommendations and I had again to pay to see the same haemotoligist that he should have referred me to on the nhs,thankfully I only had to pay for his consultations as he did all the tests himself on the nhs,bloods mri scan etc.

Bad experiences like a lot of us and no trust or faith in gps very sad isn’t it.x

[briarhillcat in reply to Hidden]

I understand, that is such a shame.

[wedgewood]

Thats a tricky one to answer . I’m all for telling the doctor ( I have done from day one ) But you have to be prepared to be castigated if you do . If you couldn’t stand that, then it’s best not to I suppose . When self-injectors keep it secret , doctors believe that the treatment is fine . My doctor told me that there were no cases of self-injectors of B12 at his surgery , when I personally know of 2 patients there who self inject in between official 3monthly injections — So I was a pariah . Every other P.A. patient could manage on 1 injection every 12 weeks , so it all must all be in my head . So consider carefully .

[earthnymph]

Hi, I tried to persuade my gp to give me monthly jabs to no avail. I told them my plans to self inject as I couldn’t handle the dreadful life-destroying symptoms. They wouldn’t train me to do it (fear of litigation I think). I started si a few years ago and have mentioned it at pretty much every appointment, telling them in detail which symptoms it relieves etc and for the most part educating the nurses in the process. I believe it’s important to be open from the start if possible. How much seeps through is another matter. One of the nurses asked me if her son (grown up) could speak to me about pa and where to get b12, and recently told me he’s very happy with si and feels much better. On the flip side one of the gps left me a message saying don’t buy off internet and don’t start si!! I’ve been doing it for years and have told them every step of the way!! I’ve certainly not had any negative reactions or been made a pariah, but I do wonder about the quality of the communication at the surgery...

[HeartyGilly]

I told my GP and was delighted ( and surprised) when he agreed to give me a scrip for my 8 weekly jab during the COVID-19 crisis so that I can self inject.

[JanD236]

I would very much like to have the fact that I si twice a week on my medical records. How will doctors ever realise that the current 2 or 3 month regime is inadequate for many if they are unaware that we si far more frequently. Also, I’m concerned about what will happen if for any reason, such as other illness, age or supply issues, I’m unable to si.

However, I haven’t told my GP as I have a ‘good deal’ with my surgery which I don’t want to risk. My previous GP, now retired, put a 5 pack of hydroxo every 5 months on my repeat prescriptions. One doctor since then has noticed and looked horrified but I was very firm that this should not be changed and luckily he didn’t. Nevertheless I prefer not to draw attention to my repeat prescription for fear of losing it.

[Cali25]

I haven’t told my practice about my SI which I do once a week as every 8 weeks is not enough. This decision has been borne out as due to Covid I asked to do the injections myself and the GPs absolutely refused! Therefore won’t be telling them anytime soon.

[CecilyParsley]

Hi Teresa, I would always tell your GP and accept that they might not react how you would like. I had a very good relationship with my GP until she refused to increase my B12 injections and when I told her I intended to self inject she took me off the three monthly injections and refused to provide or dispose of sharps boxes. She even rang me twice at home to try and dissuade me and said she had to follow NICE guidelines. My practice nurse gave me advice on how and where to inject and I found a drug and alcohol project locally who provided needles and sharps boxes. When I had a review my GP asked how the self injecting was going. I told her it was all good and that the local drug and alcohol centre had been amazing. When my husband went to dispose of the sharps box and get new needles he was refused as they were demanding that they test the B12 on the orders of my GP .I was fuming as they do not test heroin or coccaine yet they are discriminating against me using a vitamin. I wish you the very best of luck

[Hidden]

Thank you, very interesting. I will see how I feel on the day!

[Nackapan in reply to Hidden]

I pushed as far as I could .

So have 2 weekly b12 I jections on my medical records.

Can have an IM one at the surgery and sekd injecy between.

I wanted the doctors to realise this is what was needed.

O went along with trying tablets trying to get the injections further apart.

I wanted that to work and wanted it on my notes.

I've since bought sine and am having more than 2 weekly .

The doctor doed s not know this and wont be told as I've pushed het to the limit .

2 weekly prescribed. . SC on prescription

On notes and for statistics .

[kittyflowers]

I self inject and whilst it's on my notes at the surgery its listed as every 10 weeks and I get a prescription for an ampoule at this frequency I have told my GP I inject more frequently than that though not that I am at every other day now since things got so bad. My GP said in passing as he prescribed stronger anti anxiety meds that its dangerous to overdue b12. Hahah.. I told him respectfully that is not true and presumed he was muddling b12 with b6. Like you I would like to be completely open not least because I need the support as I feel so nervous and have an inner tremor and burning tingling legs feet etcefc. Just thinking about it makes me feel worse and so nervous so I wont be doing that yet. When I am better I shall though. Good luck if you dare!

[Retteacher]

We feel that they should be told, otherwise they will not know that there is a real problem with their guidelines. It is not fair on other patients if we keep quiet. After we told the lead GP, another one wrote to us expressing the practices concern. My husband wrote back explaining my strong family history and the rationale for treating neurological symptoms and it is no longer mentioned. It may have helped that he was a Neurophysiologist and sent some references and Dr Chandy's book. On the other hand ,they covered themselves by expressing concern.

He hopes to help them with the treatment of longstanding hypothyroid patients as they ignored decades of good clinical practice and started reducing my levothyroxine because of a suppressed TSH with catastrophic results.So it should be evident that we have a lively relationship with our practice. However, it is all very polite and we believe that everyone is doing their best. When faced with the science they actually admit they don't know, so progress of a sort. We really believe they must be told, otherwise they really won't learn the extent of the problem.

[mountainice]

It does depend on the relationship with the GP . I think I have made a big mistake with mine. I have been self-injecting since April 19 after being in touch with Dr Chandy telling him that I still felt not well on monthly injections (authorised by my very-good-and-willing-to-learn retired GP (she retired Dec 18.) Dr Chandy thought I definitely had thyroid problems after I sent my results. Anyway, I started self-injecting but didn't tell the practice at that time. During the course of last year at various appointments with the GP and consultants I did tell them I was self-injecting and they didn't really comment on it. Ok... now we come to Covid and like many other practices the B12 injections were stopped. To cut a long story short when I went in for my B12 I told the two nurses that I was self-injecting - it was a learner and one in charge. The one in charge said she had never heard of anyone injecting every 10 days! I would need to make an appointment with my GP to discuss this. I spoke twice to the GP, once to say that it is not dangerous and any extra gets pee'd out and after a discussion she said she would need to speak with someone senior in the practice. A week went by and I got another call explaining I need a B12 test. I said other people in this practice are receiving every other day injections (I know this, I am in touch with someone - so, at least 3 I know of), but she said she can't comment on other clinician's decisions and she could end up in court if I got ill (same reasoning why she couldn't treat me for thyroid problems). I said it is in the guidelines that no further testing is required once on injections and anyway the levels would be high because I am injecting. We got into a discussion and she said you can't follow one guideline (ie no further testing) and not another (2 monthly injections for neurological problems), you either follow the guidelines or you don't. I told her the clinical picture is the most important and she should go by what I am telling her about symptoms. While I was talking I owned up to self-treating for hypothyroidism - in for a penny, in for a pound! - no comment from her but she did agree to test Vitamin D, folate and ferritin and also thyroid test. I said to her, you were quite happy for me to receive monthly injections (and self-injecting) (been having them about 3 years) until I told the nurse and now it is has come to the attention of the wider practice she suddenly wants to start testing. She had no answer for that. I agreed to the B12 test but I know I shouldn't have, but felt like a trade-off, I agree and she will do the folate, ferritin and Vit D. She was due to do a thyroid test anyway as I was seeing a private consultant and he asked her to test me in June. I have yet to ring the practice to make the appointment. I will have the B12 test but it is worthless; I am also going to drop off a letter addressed to the gp with supporting information and saying I don't agree with the test being taken. I gave Dr Chandy's book into the practice last year, goodness knows if anyone read it.

[Hidden]

Oh wow, another muddle.... on the one hand I feel sorry for GP's having to be "jack of all trades" but on the other, it is in their interested to listen and learn regarding B12. I feel comfortable in my decision to self inject based on all the knowledge that I have learnt to date. I will see how I feel at my next appointment. Apart from mentioning at my Colonoscopy appointment when it was well received I do not think it relevant for anything else currently, unless they decide to re test B12. I will make sure I am armed with back up information.

[CecilyParsley]

Given the same set of circumstances I would still tell my GP. It is my opinion nothing more. My GP needs to know anything that might be affecting my health. I am not medically trained so I cannot tell if my Lupus, Bechets, Underactive Thyroid is causing further illness so keeping details from her would be foolish. Each person has to make their own minds up about the matter based on their medical history and potential comorbities.

[Nackapan]

If the gp surgeries were teslky interested they would do an anonymous survey across the county. Ot Tao into the PAS one already done.