I sent a request in this week by email to my new practice.The gp is about as much use as a chocolate teapot,the nurse and reception staff seem to be more open to requests.
I said that as I had p.a and now had to have regular injections could I be supplied with the necessary from them so that I could self inject rather than risk COVID at the practice,for them or me,I also said I had been taught abroad how to do this as b12 Is freely available otc.
I checked my online account today and see that they’ve added 5 ampoules to my repeat scripts to be injected one every 3 months so fingers crossed ,I have requested a prescription so it’ll be interesting to see if they do supply the needles etc to S.I when I collect next week.
You may find that you’re not supplied with needles etc. My GP was very amenable to providing me with a prescription for vials but said there were legal difficulties in providing needles etc. Being helpful he gave me a handful from his drawer but said I had to provide my own in future and deal with my own disposal of used needles.
I order needles etc from Medisave.co.uk and my local council does an annual collection (and replacement) of my sharps box, no questions asked.
Hi JanD that would be good enough for me and a positive step hopefully for other patients at the practice.I self inject every other day and I hate going to the nurse it really stings but I can’t exactly say to her gonna stick the ampoule in your bra or your knickers before you inject to warm it up please 😂I also get my stuff from medisave and thankfully I’m well stocked up with b12 from Germany.take care x
That seems a bit lame from GP's about legal difficulties. They issue insulin to diabetics, I am sure they don't say they can't have their needles and syringe boxes etc and say they have to have source them for Legal difficulties!! That makes me so angry that GP'S do this. I have struggled this year, my 11 weekly injections were cancelled until I agreed to have another 'blood test', as usual the test came back within normal range (well only just), nurse gave me my B12 injection on blood test, but l haven't felt right since my injection in March of this year, even the B12 doesn't seem to have the same affect, do you think it's the way it's been administered or they have given me a placebo, either way I have had to revert to using patches again, but at least they have agreed to 10 weekly injections, hopefully no more migraines due to being over tired!!
Most likely not placebo or technique- but that you had to wait too long and so didn't have the same effect when you eventually got it. You can ask for an injection every 2 months if you need it - guidelines suggest a frequency of 2-3 months.
Thanks Cheryl claire, I think you might be right, probably the amount of time it took them to reinstate my injections, but I still think it's got to be how they injected it. It's always been painful as the stuff stings when it goes in. The last 2 injections I have had have definitely not hurt, maybe it's the delivery, I have always had intravascular (90 degree) directly in, but wondering if they are doing subcutaneous (45 degrees)or the 2 other ways of injecting (even less), which could explain why I am not experiencing the 'normal' response I have had 16 years prior to this years last 2 doses!
Do you collect your b12 ampoule Dee then take to nurse to inject? If you do then stick it in your bra or other warm place to warm it up b4 it’s injected then it wont sting you.I’ve did well over a hundred self injections now and I never get any pain or stinging like we do with some nurses.
you sound as if you need more frequent injections especially if your levels aren’t going up much,my levels are over 2000 and I intend to keep them high as it’s the only way I can get it to trickle over into cells and keep my symptoms bearable.
Maybe worth thinking about self injecting?? Take care x
Thanks for your response Thrones, in answer, no I don't get them, the nurse at the surgery has it ready, maybe the last 2 were taken out of the fridge early before my appointment and was sat at room temperature before injecting. But saying that l lived Gran Canaria for about 18 months and brought OTC B12 ampules - although those were cyanocobalamin, then took it to a registered nurse (€5 each time - 30 minute journey in the heat), I had them every 8 weeks, no problems and these were in the heat and still hurt going in, that's why I refused in the buttocks (which is preferred on the continent)! I have asked for SI but I don't think they will do this until after the pandemic when the surgery is ,'normal' again!!
However, the 'placebo' was in response to something written on my injections note after B12 was issued, I remember having the injection but my notes show (not issued) hydroxocobalamin 1mg, which is why I am thinking it was a placebo, as this is the first time that has appeared on my injections list, after receiving an injection, unless the nurse something wrong!! I will discuss with the new nurse in February, when my next injection is. I do use patches, I am not saying they are perfect, but something does penetrate, not sure what though! I suppose it's the same as the HRT patch not everyone was able to get relief of symptoms but I did with patches!
I think with nurses always intramuscularly (90 degrees, into muscle) and usually in top of arm at the back. It doesn't have to sting or hurt at all -like Hidden said , it can be due to temperature of B12, and can also be if they don't wait after swabbing for alcohol to dry, or a droplet of B12 on the needle tip. Dull ache usually depressing plunger too quickly I think.
All nurses have slightly different techniques- and pain is usually a sign that they're rushing it!
It isn’t lame of the GP, it’s the way it is. Insulin is licensed for SC injection and this is legal to prescribe. As I understand it, B12 is licensed for IM use and this is not legal to prescribe for self administration.
I’m sorry to hear you’re last injection didn’t help. The only time that’s happened to me is when I haven’t had sufficiently frequent injections. It then takes me a few injections of the right frequency to feel good again. I can’t imagine you’ve been given a placebo.
Just to mention that opinion I’ve read on this forum is that patches can’t work as the B12 molecule is too large to pass through the skin.
I didnt get needles, syringes or a sharps box but its cheaper to buy rather than on prescription anyhow The pharmacist said to just request from the doctor and they will source if not paying
I pushed yet again as I pay my £9.15 and got 1 box.
The Gp changed to 3 boxes on request as buying own needles ect
What you do have to watch for is short expiry dates.
There was one generic brand I reacted badly to.
I have 3 or 4 quite happily as it changes and different to what the surgery inject??
My mum is prescribed 3 monthly with 5 ampoules . Only 2 put out of the box could be used because of the date.
Alot alot of waste going on. I contacted her pharmacy they just supplied more.
I hope you once prescribed can get it more often . So on your notes.
Hi Nackapan hope your feeling a bit better today? I’m not bothered about expiry dates etc as I will still self inject every other day and I have plenty of supplies of b12,I just wanted to see how amenable they would be to self injecting really,I’m hoping I’ve not read it wrong but I suppose I’ll soon find out when I go to collect my script,wouldn’t it be lovely if it was just nice and straightforward for a change.lol.
I wouldn’t recommend eating him he was a total waste of space that day,he couldn’t get rid of me quick enough,wouldn’t discuss more than one thing and said good get your professor to refer you to neuro and let me know how it goes.of course I’m to pay as usual.
Thank god I’ve got my professor and he genuinely cares and said with those symtoms there’s no question you need a referral with a neurologist to have a discussion and he’s arranging for me.Shame because I had such high hopes as the gp website is so good I thought they’d be a bit more open minded and progressive.xx
Yes it's a real shame. I've been told that one thing only. Thars simply impossible with over 28 symptoms. Am I to book the whole morning appointments lolYes the expiry dates on prescription b12 a problem. I know you will get through it but it doesnt make sense to prescribe b12 3 monthly then get 5 to uses within 6 months
Just for general awareness for everyone.
I'm glad the professor of? Is working with you well.
I saw a professor in an opticians recommended . He was helpful too. Was avery expensive trip as got tested then glasses made up with the coloured tints to try a year ago .
He was the one that wrote to my Gp to get the referral to a neuro Opthalmologist which I'm still waiting for .
I went and paid the local optician for an additional eye test and they had the equipment to do a 3D scan for me I think including the eye test it cost me about £70 but they could tell me straight away wether I needed further investigation so to me it was worth paying that bit extra for that 3D scan with them,might be worth you considering they know exactly what they are looking for.xx
I'm not sure I've had a 3D scan. I have seen my normal optician a hospital one also the professor. His testing cost £250 .Special glasses as well over 400. What was reassuring was all three found my eyes healthy . Also same prescription. I always have to go down 2 steps from prescription when glasses are made up.The last one also i used a colour metre . Often the tinted lenses help thises with dyslexia and sometimes migraine headache sufferers. They helped a bit in the supermarket with a hat on but I got the name as I went onto Headway too.Like you I had a very bad fall and was wondering if I had 'extras ' to b12 deficiency. One neurologist thought post concussion syndrome . The 3 i saw all had different theories but no solutions apart from drug trials.
No one yet has explained my reaction to artificial light.
I also saw the eye consultant at the hospital and he arranged a brain scan because he thought I had a fistula caused by the blow to the head above my eye,it was harsh enough to crack open all my “ laughter lines” son calls them wrinkles lol .After the brain scan he phoned me at home and said no it wasn’t what he suspected but didn’t tell me anything else and I was so unwell at the time I never pursued anymore as I needed physio to correct the brain signals but my eye problems continued so I paid to have the 3D scan done,another optician recommended this they didn’t have the scanner but I found one elsewhere.it’s worth it for the peace of mind I think.They all told me at each eye test my eyes were healthy and no changes to prescription required but I still struggled like you.I spent a fortune on dry eye treatments too,In the end it’s been the b12 shots that have given me relief from that constant stabbing and burning grittiness in my eyes so hopefully in time the b12 will do the same for you.keep battling Nackapan there’s always a light at the end of these very long tunnels we are in xx
Yes I had a brain ct scan and 2 brain MRI scans I fell badly onto concrete hard. My legs were tied up a stupid newspaper tie not cut as they should be whilst unpacking as dont break!!
On the right side above my eye.
I did go to the Gp as declined an ambulance 9 days later as ribs still sore and fat lip and swollen nose. I thought I was anaemic. No bloods done. I seemingly recovered . 1 out of 3 neurologists thought post concussion. All 3 had different theories . I was grateful for the ct scan to rule out a bleed. So ill at that stage . Couldnt walk. B12 deficiency wasnt found until a few weeks later.
My vision fades from the right when typing this and trying to read.
Anything larger than this phone and half the page disappears from the right. Like you it's the messaging from eye to brain. Using my eyes sets off tinnitus and head pains.
I will look into 3d testing while I'm waiting for the neuro opthologist.
Painful memories Nackapan aren’t they,4 years later I’m still not over it,still have that abnormal obsessive fear of falling again,but never mind life goes on and we are here to tell the tale,there’s always someone out there going through challenges ,maybe on their own so it’s nice we have our friends here to turn to.take care xx
Sorry my professor is an endocrinologist,he doesent chase me for fees and if I think I need a referral or a scan or a treatment he will happily discuss by email or he’ll telephone me,I’m not always right but then neither is he so we work well together.His secretary is also brilliant and a breath of fresh air ,very supportive.If I have a phone consult appointment they bill me what I think is a reasonable amount and I pay it promptly but they don't hit me with loads of bills for silly things and he will try and get the gp to do their bit but it’s not his fault if they choose to ignore his requests,we then work out another route.x
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