Do you tell your GP about self injecting B12?

[Caradoc1a]

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?

[wedgewood]

I told my doctor and he disapproved. As a result , I don’t get any more B12 injections .

[Caradoc1a in reply to wedgewood]

That is awful. So wrong.

[HeartyGilly]

my GP knows. No problem

[Annamaudebug]

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.

[Caradoc1a in reply to Annamaudebug]

Thanks for the reply. It's great that you have system which works for you

[bookish in reply to Annamaudebug]

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

[Annamaudebug in reply to bookish]

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.

[bookish in reply to Annamaudebug]

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

[GoneWithTheWind1972]

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.

[Caradoc1a in reply to GoneWithTheWind1972]

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!!

[GoneWithTheWind1972 in reply to Caradoc1a]

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.

[Annamaudebug in reply to GoneWithTheWind1972]

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.

[GoneWithTheWind1972 in reply to Annamaudebug]

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.

[Caradoc1a in reply to GoneWithTheWind1972]

I wonder how many of those once every 3 months patients are supplementing on the quiet....

[Midnight_Voice]

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.

[Caradoc1a in reply to Midnight_Voice]

Indeed ironic!

[Annamaudebug in reply to Midnight_Voice]

Yep, very ironic. I guess we are all benefitting from the “placebo effect”.

[bookish in reply to Annamaudebug]

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?

[Caradoc1a in reply to bookish]

exactly!!

[topazrat]

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.

[Caradoc1a in reply to topazrat]

Thanks for sharing. It is crazy how this is being dealt with nationally.

[Sleepybunny in reply to Caradoc1a]

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.

[Caradoc1a in reply to Sleepybunny]

Thanks - I'll have a read

[GoneWithTheWind1972 in reply to topazrat]

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.

[Caradoc1a in reply to GoneWithTheWind1972]

Thank you for sharing. It's good that you have found a way which works for you.

[Regenallotment in reply to GoneWithTheWind1972]

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 😂

[Cherylclaire Forum Support in reply to topazrat]

"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 !

[MoKayD]

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.

[Caradoc1a in reply to MoKayD]

Wow!! That's such a helpful doctor.

[jointpain]

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.

[LizWilsonpa]

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.

[Caradoc1a in reply to LizWilsonpa]

I can't understand why they withdrew the prescription as you had neuropathy. Just ridiculous.

[Regenallotment]

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 🤷🏽‍♀️

[Oneash]

No 🤫