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Autoimmune disease

B12 injections being ended

58 replies

NumberMonkey · 31/03/2020 19:47

I had a message from our GP practice - as a result of COVID-19 they are reviewing various practises and have decided that from May onwards they will no longer treat B12 deficiency with injections. Instead we will be given a prescription for 1mg Cyanocominn tablets or can buy our own.

The fact sheet makes interesting reading and basically suggests that everything I’d been told about B12 deficiency by my GP and the Practice Nurses since I was diagnosed with it in January is a myth.

Has anyone else had similar?

OP posts:
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Twilbury · 06/05/2020 17:40

I have contacted my surgery today to find out what I am supposed to be doing .

They are normally really good and give me the injection as soon as I ask, I don't have to stick to a definite pattern. They trust me to know what my symptoms are and now have just left me high and dry.

I also had a letter for a smear a few weeks ago which I obviously can't have either.

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KillerofMen · 06/05/2020 17:45

Marking this as I'm investigating this issue on behalf of my mother in law.

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Kez0777 · 06/05/2020 18:22

I've spoken to my doctors, my next injection is mid June. The receptionist said that it depends what your level are and your symptoms. If you can have tablets then they will ask you to have them but if not and you need your injection you can have it.
She did say though that this is the information for now and things could change by the time I need mine. She just said to ring a couple of weeks in advance

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Twilbury · 06/05/2020 18:41

Different surgeries do seem to be doing different things.

I can't see how suddenly tablets would work when we have always been told that we can't absorb it that way.

Mine is due in the next couple of weeks but I hope I get an answer by then.

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mrsbyers · 06/05/2020 18:46

Still getting mine by injection but I can’t absorb orally

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Twilbury · 06/05/2020 18:49

I can't either but all I have had is a letter telling me it is not seen as urgent so all B12 injections have been cancelled for the foreseeable.

I have filled in one of the most complicated forms ever on my GP website an hour ago so hopefully I will get an answer tomorrow.

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PretzelVanderspling · 06/05/2020 18:52

My GP rang me earlier to say I can still have the injection. They are going to do it in the car park while I sit in my car.

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Twilbury · 06/05/2020 18:55

Is that because you rang them and questioned it @Pretzel ?

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Hearhoovesthinkzebras · 06/05/2020 19:02

My last one was cancelled but I was told that they would do it next time (due in June, so remains to be seen). I can't absorb b12 and have macrocytic anaemia even with b12 injections so no idea what it will mean for me if they do away with them. Doesn't seem like they will care very much, as with many other chronic illnesses we're just expected to manage.

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Tilpop · 06/05/2020 19:03

My mum has pernicious anaemia and is B12 deficient. She had a stroke in the end it was that bad.
She now injects herself. She orders her vials and seringes from Germany and they get sent to her. She is an retired NHS sister so doesn't have a problem injecting. I'm also B12 deficienct and she does mine too.

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OhLookHeKickedTheBall · 06/05/2020 19:30

My gps have said they're still doing them. Thankfully. I can't absorb orally either though if I had to I'd go down the self injection route.

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PretzelVanderspling · 06/05/2020 19:59

@Twilbury I just rang up to make an apt and the Dr called me back to say I was still allowed to have the injection, which I thought a bit odd. I had no idea they were stopping some until I found this thread.

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mrsbyers · 07/05/2020 12:49

I’d actually much prefer to do them myself , it would be much easier and less disruption to work etc but they’ve said not possible

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angstridden2 · 07/05/2020 13:25

My practice nurse actually rang me this week and booked me in for beginning June when I’m due next. Obviously depends on surgery.

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endofthelinefinally · 07/05/2020 13:30

That is ridiculous. Of course people on injections can't absorb it via their digestive tract. Otherwise they wouldn't be on injections.
I haven't heard of the sublingual tablets. Must look into that.

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IncrediblySadToo · 07/05/2020 13:43

I need B12 (200) &Vit D (50) - last tests.

Can anyone please add a link to the actual injections they buy or the sub tablets. I'm worried about buying something dodgy (after a nasty experience a few years ago)

TIA 🌷

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Twilbury · 07/05/2020 15:22

I have spoken to my lovely gp today and she has told me to try the sub lingual spray but if I have any symptoms then they will sort something out so that has made me feel better.

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Dragonscale · 08/05/2020 08:18

I have tried the spray and the sublinguals but they make me dizzier!

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Bubblysqueak · 08/05/2020 08:27

I was diagnosed with low b12 9 weeks ago (b12 was 79) and had my last injection of the set on the second day of lockdown (it was supposed to be the Friday before but the nurse was Ill) my gp insisted that I got the last jab as they said it was essential and have also confirmed that I will still be getting my blood test in June to check levels so I'm guessing they are still doing them.

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AveEldon · 08/05/2020 08:33

I'm still receiving injections from my GP practice - I don't absorb B12 from food so tablets are useless

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AnneLovesGilbert · 16/05/2020 22:48

I’m having my jab on schedule next week. After reading about so many GP surgeries around the country cancelling b12 injections I was prepared to fight my corner but for some reason it’s going ahead as planned. It’s awful so many people are being left without the care they desperately need.

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Ohshine · 16/05/2020 23:05

Mine is due on Tuesday. I have them every 10 weeks, and can't absorb from tablets. My GP surgery contacted me about 10 days ago and explained they were not making appointments for the jabs, however I could take a tablet (explained I couldn't) and was given the option of waiting for them to say it was safe to go to the GP for the jab, or I could self administer at home. I was able to go later that day and collect vials, syringes and a handy guide to self administering. Was quite relieved as there's no way I could have waited for it, especially when trying to work and feeling so exhausted!

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ColdSkin · 17/05/2020 10:51

I have had to order some syringes from China (Oh the irony) but they are gonna take weeks to come. I will have to learn to inject myself. My GP surgery are flat out refusing to do them. I am weeks overdue and feel awful.

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AnneLovesGilbert · 17/05/2020 11:45

www.exchangesupplies.org/shopdisp_212GLB.php

Try these. Really fast delivery.

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AtopAHighHill · 18/05/2020 14:48

Watching with interest.
I'm due at the start of June and all my symptoms are back, numbness in face, tingling lips, aching all over, and dreadful fatigue. My eyesight goes funny too.

I'm hoping our surgery is still doing injections. I've bought the sublingual spray( Amazon £9) but time will tell if it helps.

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