Self Injecting - Do you tell your GP/... - Pernicious Anaemi...

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Self Injecting - Do you tell your GP/Nurse?

Bumbles0404 profile image

Hi. I’ve just started self injecting (only once so far) and I had my first 12 weekly injection with the nurse, since loading doses last Friday but didn’t advise the nurse that I’d self injected two weeks prior to this.

I was just wondering what everyone else does who self injects, as far as disclosing this? and if you have told the GP/nurse what the reaction was?

28 Replies

My doctor knows I need to supplement between my NHS injections but I haven't actually said "I inject myself with b12 subcutaneously and often take high dose sublinguals" I'm not taking the chance of him stopping my injections. As it is, the nurse complains about me having them every 8 weeks.

Hi,

I did tell GPs originally but not sure if that was the right decision.

When asked about it now, I just say that I take extra B12 if my symptoms come back before next injection. One nurse assumed that I meant tablets or sublinguals.

I told my doctor I was self injecting when asked. She now adds it to my prescription 8 weekly. I buy a few more as inject 6 weekly. Doing it at home saves the trips to the surgery and having to see the nurse who has no idea what pa is like.

I have told several GP’s & specialists that I need to self-inject to stay well & have given them printed evidence to support my decision. I decided on this approach because unless they are aware that there are those of us who cannot cope on the standard NHS protocol, they cannot know of the huge problem this is for so many people.

I have had varying responses. Most are horrified, one was condescending & rude, but one haematologist & my own GP are willing to let my symptoms guide their judgement & endorse my decision. The haematologist had come across others who had said the same. However, neither are willing to go the whole hog & prescribe B12 for me in the quantity I take it!!

Once I started self-injecting, I figured it didn’t really matter what they thought. I may have been more reticent if I was relying on B12 from the surgery.

All the very best to you 😊.

Bumbles0404 profile image
Bumbles0404 in reply to Ajane

Thanks for this Ajane. I think I agree with your approach and I will mention it the next time. I to am letting my body tell me when I need B12 and not the strict 12 week guidelines the NHS impose upon us with PA. After loading doses I felt great, up until 6 weeks in and I felt awful, so just went for it with self injecting.

I told my GP exactly what I am doing. They have agreed to supply the b12 vials and the needles and syringes. Recently I told them I had moved to daily injections and had gained further improvement. I wasnt expecting them to provide for daily but they have. I think its because they have seen for themselves the miraculous improvement.

I prefer to keep them informed because if I was ever ill no one would know and incase any treatment for something else is contraindicated due to b12 injevtions. I also think that if I dont tell them what I am doing they get a distorted view of what is effective.....which doesnt help anyone else.

Totally agree wavelylines. Thanks.

It depends on how good a relationship you have with your doctor and how you think they might react.

I have a good relationship with my doc and I knew he would listen to me. At first he was shocked that I could get B12 without prescription from Germany and needles and syringes from Amazon. But I went through the details with him, showed him my log of symptoms that showed I needed something better than every two months, and he agreed to give me fortnightly jabs. I've since told him that I top up with my own stuff every now and then, but not that it's twice a week.

But others have reported a totally different reaction, up to threats to no longer treat them at all.

Bumbles0404 profile image
Bumbles0404 in reply to fbirder

It’s mainly the nurse I see and I don’t have a regular GP but I think I will mention it next time. Thanks for the advice fbirder.

waveylines profile image
waveylines in reply to fbirder

True......it is a tricky situation. However they do have a responsibility for your wellbeing and unless you politely insist you carry on without in my experience.

Although I am not a big fan of self treating sometimes sadly it is necessary to show the effects and to prevent further decline. Belief me I got a refusal when I requested B12 (my GP was really thrown when I suggested it) before self treating.....but when I went from barely being able to walk etc to such a visible obvious improvement it is difficult for any doctor to refute it. Nevertheless they wanted a neurologist to underwrite it. So I ended up self treating for 10months.

I went through a simular experience when the standard treatment didnt work for my hypothyroidism. Its not that any doctor doesnt want to help but just that they are programmed to follow very set processes -if you dont fit into one of those then the system fails you. In hypothyroidism if a doctor steps outside the rigid protocol they find themselves infront of the GMC and can be struck off. So most GPs wont venture outside any set protocol. Dr Chandry did and he faced the GMC and won. Terrible way to treat a doctor who listens and moves treatment on.

My worry in the thyroid world much as in the b12 deficiency world that there are loads of people forced into silently treating themselves for the sake of their health, leaving the medical fraternity to belief their current protocols/treatments work as they dont know people are topping up ot self treating which compounds the problem even further.....

I would NEVER tell a doctor where I purchase as action may be taken to get that route closed if they really are in opposition.

At the end of the day its my body and I am the one that has to live with the impact of conditions/medication whether its self treatment or a doctors treatment. I believe that gives me the right to be heard and respected and my views and wishes to be considered.

Sorry wil get off my soapbox now!! Haha! Lol.....

Thank you so much. Really enjoyed reading this reply. Crazy your Dr was taken to the GMC for actually helping. I too have Hypothyroid and it’s been treated the same big standard way for as long as I can remember. It’s not a big deal in the UK, use seem to treat very differently. Thanks again for the advice, stay on your soapbox please.😊

My GP is fairly good and a couple of years ago agreed to let me have a prescription to si on a monthly basis as a trial. I top up this prescription as I need injections once and sometimes twice a week.

That GP has since left the practice and a different doctor who was reviewing my annual thyroid blood tests (I had Graves 13 years ago and now hover just around the under active ranges) noted my monthly prescription and moved to change it to 3 monthly. I strongly objected and he left it as it was.

Because of that I haven’t mentioned B12 to a GP since for fear of losing my monthly prescription. It’s a shame as I would prefer to be honest, particularly in case I ever have to rely on the NHS for all my B12. Also because it would be better if the NHS knew my full medical history!

Lurcher-lady profile image
Lurcher-lady in reply to JanD236

Totally agree that it would be best to let your doctor know. Mine is so condescending and rude (I didn’t do 6 years in medical school to be told I’m wrong) that I opted to say no more. Every visit ends in myself sitting in carpark close to tears. I SI and do wonder what would ever happen if I was hospitalised etc for another reason. B12 would be high, but I reckon I’ll have to cross that bridge if it happens.

Feel for you Lurcher-lady I really do. Thing is b12 is such a harmless treatment that one wonders what they are playing at to be so opposed! It is madness! Theres no way you should have to remain silent to preserve your doctors ego! I avoid that type as much as possible......flippin nightmare to deal with....lifes too short!!

Generally the ones I found most open to working with you & dont need their egos stroking are female GPs. Dont know if this is my surgery or a generalised thing.....lol.

This was a female GP assigned to me waveylines at the request of the male gp who originally told me I didn’t have a b12 problem at all after my levels rose from 130 to 400 in 3 months on tablets (he thought I was unreasonable hence passing me to her the senior partner). That would have been fine if I’d felt better, but I didn’t. The female gp agreed to give me loading doses but said it could take months to see a difference. When I told her I felt improvement after the first week, she laughed and said that was because of the tablets I’d taken for 3 months, either that or placebo. I told her that it was def not placebo as previously id felt so unwell that would have been impossible. She just kept going on about the levels proving I was ok. I gave her info from the PAS and she just said, ‘but you don’t have PA do you, so that’s not possible. She told me I could have another injection there and then and to go back in a month to discuss. Of course it helped but a week later I was drained so now self inject and won’t be going back. Funny thing is that looking at test results, my B12 and folate have now trebled, yet the Doctor doesn’t seem to have noticed this and just sent the message: Normal...no action! Thanks for listening 🙂

Oh lurcher-lady am sorry to hear this. Glad you took control though.... I stand corrected re female GPs!

Well I notice the difference within a few hours after each injection. I have tremors and though they have improved hugely in the last year I still have them, I inject at bedtime but by the following eve my tremor has started to worsen. I know it sounds mad but its true. If I inject in the morning the tremors improve by early afternoon. I dont understand why I need so much B12 but it is what it is. At least the GP has given in at the moment.....whether they will renegade late on have no idea!!

I’m sure on the whole they ladies are better. At least she wasn’t quite so condescending as the male gp. Good luck with your SI

Nothing else was helping me and although very difficult at the start I managed to get every other day and just have booked what i feel I needed at the surgery since. I'm guessing as much as the doctors. At times have felt overwhelmed making the decisions of how often to have them. I'm presently on 2 weekly built up the gap since November 18. Tried one 3 week gap recently and seems to be the same if not doing a tiny bit more but then in bed again .(not all day but for far too many hours) Not ill with a migrain but too fatigued and heady . This is strangly 8 days after my injection though? ? So still trying to work out a regime. A long way to go. I think if you can be transparent with the G.p it's better .It's on ypur notes and helps others. I know why some arnt and appreciate that.I wouldn't want to go through the stress again of getting them more than the initial NHS regime 3 monthly after loading doses I was prescribed.

I'm still suspicious as I saw b12 written on my blood test. I will simply cross it out and tell Gp why.

I haven't a PA diagnosis which dId not help with initial 'negotiations'. When I was very ill.

Even the last neurologist I saw who had b12 defiency himself said so much reserch is needed.

In theory 2-3 months is enough but he knows in practice this is not the case. So trial and error. To date the only thing that has brought on slow improvements is the injections. I personally after a while couldn't handle them more frequently and seem to feel better with a gap.

It's just working out what gap.

I do hope you can get an open dialogue with your doctor.

I di find listening skills are being lost.

Also logical sense of what improvements being made by B12. Rather than be governed by what the computer sayst or numbers say.

My Gp varies from trying to understand and says learning from me to really irritated by me not taking antidepressants and other drugs . I think the boxes can't be ticked on the screen. I know this as was also pushed into ticking boxes on a template when I worked in the NHS. I wish you well.

I dudnt ask for instruction if it was ever necessary to do it myself . The doctor and nurse said that would not be necessary .

I have not told anyone at my surgery that I self inject - (I also get some injections from a private GP which covers NHS blood tests showing high B12.) My GPs have not earned my trust.

Cherylclaire profile image
CherylclaireForum Support

I have been totally honest with everyone: GP, nurses, consultants.

I tried it their way: loading doses, then 1 every 3 months, which made me get a lot worse. Felt really awful.

GP did more tests and diagnosed Functional B12 deficiency, confirmed by laboratory.

Started reloading: was given 2 injections a week. Finally started to feel better, then got worse again after 6 months, which was a huge disappointment.

GP sent me to haematologists who believed B12 to be toxic, carcinogenic and highly addictive - so advised GP in their report to only give me 1 injection every 2 months.

At this point, I did not want to deliberately deteriorate in order to prove a point (way too scarey) so started self-injecting every other day, and have done so now for about 2 years. I managed to get back to work after 15 months off sick- although now part-time, I'm coping.

My GP knows I self-inject: she knows why, and it is on my record that I do this. She now attributes visible symptoms to B12 deficiency, and can tell if I am not doing well. She tests my ferritin, folate, thyroid levels and I take prescribed vitamin D3 for osteoporosis of the spine. She never tests my B12 levels - knowing it to be pointless. I trust her.

The nurses, used to giving 3-monthly B12 injections to everyone with B12 deficiency, were concerned about the 2 injections a week they were told to give me. One of them admitted to Googling "B12 and toxicity" just to make sure she was not killing me: she now knows not to worry, so she now knows more than the haematologists ! Because it is on record, the nurses know that I now self-inject, and they still give me 1 injection every 2 months as advised by the haematologists. They're probably a bit relieved.

Consultants ? I've found them a bit less up for a discussion, and way more likely to come up with unsubstantiated alarmist comments such as those above. Still, likely that GP will have mentioned it already in their referral if you do choose to tell him/her.

I was told by a metabolics expert that he understood injecting with B12 to be "euphoric": I really don't have the energy to waste on explaining quite what level of desperation would drive anyone without experience or guidance to stick a needle into their leg.

My current goal is a simple one: to have one symptom-free day. A little short of "euphoria", don't you think ?

I would say that, given what I have read on here, telling medical professionals that you self-inject is not always the right thing to do for everyone - and you can't unsay it.

You need to have built up a mutual trust with your GP first, and stick with that doctor if possible. They will become familiar with the visual signs - your indicative symptoms. The nurses will also be aware of improvements or setbacks. It is reassuring to me - I hope you can access that kind of support network.

Hi Cherylclaire

I do hope you get your day of "euphoria".

I don't tell. I thought my GP, newish to the practice, was to be trusted but when she insisted I had a B12 test and then tutted at the result I think not. The next time I presented her with Stichting B12 Tekort, I have not seen her since.

She is still better than 'Dr 'curt', Dr 'we don't do that here' and Dr 'jolly, who phones and says scan is normal' - the scan result it is two operations worth of normal. Trust - no way.

Cherylclaire profile image
CherylclaireForum Support in reply to beginner1

Miss the cartoons.

As I recall, I told the GP that I was thinking about self-injecting, and she asked when I was going to start and I had to admit "Yesterday" - just can't lie.

As for "Euphoria": if I ever get there, I'm changing my name !

I've been trying some cartoons but they would be 'off topic' here.

I Self inject and when I told my GP I was 'thinking' about it he was horrified and said if I started to SI he would stop my NHS 3 monthly injections. Needless to say I kept quiet after that !

Bumbles0404 profile image
Bumbles0404 in reply to LWhelan

Ugh! Such a mixed bag of experiences but a good way to put the feelers out is doing what you did LWhelan. One key thing is the type of relationship you have with your GP and I don’t have a regular one, so maybe not a good idea until I do. Thanks for the reply.

LWhelan profile image
LWhelan in reply to Bumbles0404

Yep every time I go I get a different one - I raised it with two different ones and got the same response !!

waveylines profile image
waveylines in reply to LWhelan

Oh my.....you had no choice and how silly of the GP cos of course what else could you do but keep quiet! Do you see a different GP now?

I dont think Im super popular at my surgery though Im always polite (even if it is through gritted teeth) but at least I hope they will have learnt to have the sense to come up with some reasoned scientific explanation before saying no......though that could be dreamland......& it can & has been a long protracted road involving multiple 'discussions', visits to specialists & even letters to get there'!!! 🙄😤 groan..... maybe I live in the hope that in future theyd think twice?

Monitor the severity of your symptoms daily and Keep your own logbook of symptoms and provide a typed up list at each visit to give them any evidence they need. Ask for it to be included in your record.

Be wary of any additional blood tests as results should be very high, which is where you want them to repair neurological damage. The temptation for the GP will be to look only at the upper limit and try to convince you to reduce your B12.

Tell them you are self injecting and all the supplements you are taking. Use your assessment of your symptoms to monitor your progress as well as the basis for any argument you may have with your GP.

Keep them on your side as you still need them for other medication etc.

Repair of neurological damage can be very counterintuitive with additional symptoms like pain showing up so pay special attention to the symptoms just before (B12D) and in the 3 or 4 days after your injections (repair). It takes the brain a few days to recalibrate to stronger signals on the repaired nerves.

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