Thinking of self-injecting

[Lynne17]

Hi I’m probably repeating question / advice request from elsewhere but hoping some of you can help - I’m new here!

I live in the UK and was diagnosed with B12 def about 9 months ago, got the 2 week treatment and then onto 3 monthly injections. The trouble is that the injections only last 8 weeks and then all symptoms return - worst ones are pain/ numbness / tingling in all 4 limbs and really bad tiredness. My gp surgery will not change this despite having all these neuro symptoms (have had numerous blood tests for intrinsic factor, folate, etc which all have come back OK) so........

I’m thinking of self injecting and have looked at where you can buy this from - what about the needles? And how can you safely dispose of them? Should I let my doctors know I’m doing this?

Any advice / links grateful received 😁

[fbirder]

I get:

2 ml syringes from Amazon.

Green needles to withdraw from the vial and blue syringes to inject. From Medisupplies medisupplies.co.uk/Syringes... Note that the blue needles come in two lengths. If you have very little fat at the injection site then 1” should be OK, otherwise 1.25”.

Medisupplies or Amazon can also sell you a sharps bin. What you do when it’s full depends on where you live. I have a local council that will pick up a full one and replace it with a new one. Some people use a local needle exchange, others a pharmacy, some a vet.

The B12 itself come from Germany. If you can understand German, or you’re comfortable using Google’s translation tools then versandapoapp.de is a favourite. Others, including amazon.de are available.

Should you tell your GP? That’s a tricky one.

I told mine, who seems surprised and worried that I could by it OTC from Germany. When I told him I used Amazon he was even more surprised. I’m sure that was what swung it when I persuaded him to give me fortnightly injections. He’d rather I was getting too much (in his eyes) B12 from good, English, source rather than using that risky foreign stuff.

Others have had hugely different responses, up to threats to be removed from the GPs list.

You’ll just have to try and figure out how yours might respond. Mine may have been more receptive because I had given him a (signed) copy of Martyn Hooper’s book.

[wedgewood]

Not to worry about getting German B12 ampoules .The one’s I use are used in many NHS Surgeries ! They are absolutely reliable .

[Lynne17 in reply to wedgewood]

Thanks for that, I was a bit concerned about that side of it. I think I might have one more go with my gp and take some of the info from the pasoc with me

[fbirder in reply to Lynne17]

Just casually mention that you’d noticed that you can get B12 injections from Germany and that you were thinking about saving the NHS some cash by going down the DIY route.

[wedgewood]

Good idea . I wish you all the best in that !

[fionasloane]

I am in almost exactly the same position. I had my loading doses in March, but they started to wear off after six weeks and I was back to square one at eight weeks. The doctors were quite hostile about giving extra injections. I've ordered all of the injections supplies as listed on this site, but I haven't self-injected yet as I'm being referred privately next week (thankfully my husband got private health insurance with his job last year). If I can't get joy there then I'll probably head in to my GP with a copy of the book and let them know I'm self-injecting.

I really want to try and persist with my GP in some way because I feel that by self-injecting without a GP's knowledge it's hiding the problems we're all having and I feel we need to stand up and shout about this so that there is data somewhere in the NHS about the doses we need to survive otherwise nothing will change. I found the sublingual drops and lozenges really helpful, although I need to take about 20 doses at a time to get any effect and they're very expensive so it's not a long-term solution. Let me know how you get on with your injections. None of the posts on here have indicated anyone having problems self-injecting so that's quite comforting.

[Lynne17 in reply to fionasloane]

Thanks for that, please let me know how you get on. I am thinking the same as you with this that I’d rather try and get to my gp agreeing to 8 weekly injections. My main problem is that is that it takes 4 weeks to get an appt at my doctors (too many patients and too few surgeries!) so my next injection will be due by the time I see anybody anyway

If you manage to see someone privately please let me know how you get on, I may go down that route myself if I can find out where to go

Good luck

[fionasloane in reply to Lynne17]

Willdo. I found that although it was frustrating trying to get an appointment with the same doctor each time, the progress I made over a couple of months by someone who knew the whole story was worlds ahead of the previous few years going from doctor to doctor trying to explain from scratch every time. I could suggest that you work the system and make one appointment for 4 weeks, and one for 5 weeks, one for six weeks etc. You can always cancel them if you don't need them, but if you need them you'll not have such a long wait. Good luck.

[Gilmarnay in reply to fionasloane]

Hi Fionasloane - totally agree about not hiding the problem. I've been SI now for almost a year - every 5 weeks or so. I recently told my practice about it and listed all the improvements in my health since SI.

I said I wanted to stop SI and be treated more regularly by my practice but they were still having none of it and once again I left the practice angry and frustrated - but at least my mind had been clear enough to hold a full conversation and explain my point quite well which I wouldn't have been able to do on the 3 monthly injections. It is very important that they know about SI - they need to be fully aware that current treatment is insufficient and that we r so desperate to have more. I intend to have further discussions with them and will take some literature in too. It's such a struggle though. Rgds

[fionasloane in reply to Gilmarnay]

Good for you. It's important that they're aware of the problem. It seems to be very much doctor-specific. Good luck.

[Lynne17 in reply to Gilmarnay]

Aah yes, I think that is part of my problem that I can’t get my point across clearly due to the ‘brain fog’, am now waiting to hear back from consultant whether they will ‘bend the rules’ and give me 8 weekly injections instead although next injection due before that is likely to happen. Hopefully, this will be the last time I have to suffer like this

[Lynne17]

Having spoken to my doctor today, she’s advised me that I try sorting it through a private gp, she is also speaking to the neurologist to see if they can get the OK to give me the injections every 2 months instead.

Apparently, all my neuro tests came back OK from them in terms of any damage which is why they can’t give me the injections earlier than 12 weeks but it appears they haven’t officially discharged me so hopefully may make some progress there - at least I feel like she is listening to me