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Original poster

Has anyone successfully challenged the withdrawal of their B12 injections?

88 replies

airforsharon · 16/07/2021 11:11

Posting here for traffic as i know this affects quite a few people, but happy for it to be moved if MNHQ think it should be.

Early last year i was told the 3 monthly B12 jabs i'd been having for a couple of years would be stopping, and everyone receiving a B12 injection would be 'advised' to take high strength supplements instead. Like many others I can't absorb B12 via my stomach - i had been taking a good B vit complex supplement for a couple of years prior to diagnosis as i'd been feeling so unwell but my levels were still very low. As a result of being B12 deficient for a long period i've been left with some minor neurological damage.

My GP recommended i start taking a 1000ug supplement daily in March, which i am (the Solgar sublingual ones). My B12 levels were tested in the July, and were pretty high as i would have expected (last B12 injection was Dec '19) - they've just been tested again and are falling, although still ok. But definitely heading in the wrong direction :/ Folate has fallen too.

I've made a telephone appt to speak to my GP about it next month, and would like to ask to go back on the injections. Just wondering if anyone else has been in the same boat and been able to continue receiving the injections? Tia.

OP posts:
Christmas21 · 16/07/2021 11:28

I have b12 injections every 10 weeks and I've not been through this. I had my last injection 6 weeks ago.

Did your GP say it was happening to everyone on b12?

FaceLikeAScallyOnion · 16/07/2021 11:34

Mine were also stopped last March and was told to take tablets, but I cannot absorb tablets. I tried various ones and they made me dizzy.

I just learned from Youtube how to do injections, ordered some syringes from Amazon and started doing them myself with help from DH. The ampules are on my repeat prescription so I just carried on ordering them, I have been doing them every 8 weeks instead of the usual 12 weeks as I have so many ampules in my stashGrin

There was no way I was going to stop the injections, I have been on them since 2007 and would go downhill very fast if stopped. I know we have been in a pandemic for the last 18 months but I am shocked at the lack of healthcare in this country.

DaisyDreaming · 16/07/2021 11:41

B12 injections are super cheap, I would just get a private prescription and self inject. If using a big needle is too scary then b12 can be done subcut with insulin needs. I used to inject them IM but switched to subcut

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General health
Original poster
airforsharon · 16/07/2021 11:43

@Christmas21 yes, she said it was an Instruction From On High within the health service that all currently receiving jabs should be swapped to oral supplements. Bonkers when you think majority of us receiving jab do so on GP approval. I assumed it was to do with Covid, but turns out not.

@FaceLikeAScallyOnion i've been wondering if that was an option, but tbh the thought of injecting myself makes me go green 😄

OP posts:
Laney79 · 16/07/2021 11:45

My mom is on b12 injections and nothing has been mentioned to her about stopping them-might be a local ccg policy rather than National nhs one? If so you could challenge it?

FaceLikeAScallyOnion · 16/07/2021 11:48

the first time was pretty nervewracking, but a pro at it nowGrin

DownWhichOfLate · 16/07/2021 11:57

Can I ask what your B12 levels are / were please? My doctor isn’t interested in my quote low levels but not sure if they are low enough to bother about. Thanks.

Original poster
airforsharon · 16/07/2021 11:59

@FaceLikeAScallyOnion

the first time was pretty nervewracking, but a pro at it nowGrin
Well done you 😀 I'm a shocker with needles, but needs must i guess

@DaisyDreaming thanks, it's interesting to hear that people are taking it into their own hands

@Laney79 I thought it was nationwide tbh - interesting that it might be a local decision, and possibly easier to challenge

OP posts:
Original poster
airforsharon · 16/07/2021 12:03

Hi @DownWhichOfLate they're currently 909, down from 1,114 last July
When i started receiving the injections they were around 200

OP posts:
Laney79 · 16/07/2021 12:07

From what I can see some gp's stopped doing them due to the pandemic (reduce risk for patients and staff as less people going to the surgery face to face) but I can't see anything that's come down nationally.

eccecc · 16/07/2021 12:11

I haven't. I've got a letter typed up but I'm too nervous to send it.
My levels were 400 at last test despite me taking a supplement everyday. My folate was 2.(something) so I got folic acid but still no injections.
Haven't had an injection since February 2020.
Following this thread with interest and sorry to everyone out there suffering Sad

DownWhichOfLate · 16/07/2021 12:12

Thank you @airforsharon. Mine were about 180 but are now around 280 as I have been eating lots of marmite. I feel quite unwell a lot of the time and don’t know if I should push with the doctor at this level.

Ginger1982 · 16/07/2021 12:13

This happened to my mum. She's been in B12 injections for years due to an absorption issue. Then they phone her up one day and say 'oh no actually it's dietary, so you can take pills instead.' She tried them but they weren't really having any affect so they agreed to give her the jag again, but she has to fight for it every 8 weeks as they try to put her off. It's ridiculous.

Theforest · 16/07/2021 12:16

I've only started injections in March this year. Nothing has been said to me about stopping. I think I read that they were stopped in the first lockdown but should now be available again.

eccecc · 16/07/2021 12:17

I should say my levels were originally 150, went over 1000 with injections and as I said 400 at last test and probably fallen again since. I've phoned and asked for my injections to be restarted a few times now and been refused. Was offered yet another blood test but that's not what I'm looking for.

blackheartsgirl · 16/07/2021 14:10

I've had my tablets stopped

They've done this twice in the past. Within 6 months I'm back on them again as I'm really ill.

They still don't seem to make the correlation

Sunshinedrops85 · 16/07/2021 14:27

If you can't absorb you should be on the injections 100%. The consequences can become quite severe - don't let them fob you off.

Original poster
airforsharon · 16/07/2021 14:50

@DownWhichOfLate

Thank you *@airforsharon*. Mine were about 180 but are now around 280 as I have been eating lots of marmite. I feel quite unwell a lot of the time and don’t know if I should push with the doctor at this level.
When i was 1st diagnosed i did a lot of Googling and was struck by how many people had levels similar to yours but had been told they were fiiiiine by their GP - apparently 500 is 'ideal' and (depending on GP) below 150/200 isn't fine, but it's perfectly possible to be feeling crap with a level of 280, so yes i would push in your shoes.

@eccecc we're in a similar boat :/ I'm shocked that you and others who've replied are being fobbed off like this. At my worst my balance, memory, speech and energy levels were all affected. I had tingling in my hands & fingers, muscular spasms and could fall asleep on a washing line, i was so tired. I had an MRI scan to rule out MS, as the symptoms are very similar. I'm incredulous we're being put at risk of such debilitating symptoms for want of a regular injection which keeps us functioning as a useful member of society. I'm a single mum of 3 - i can't become that unwell again.

Thanks to all who've replied so far. Feeling bloody cross we're in this boat.

OP posts:
Original poster
airforsharon · 16/07/2021 14:51

@Theforest

I've only started injections in March this year. Nothing has been said to me about stopping. I think I read that they were stopped in the first lockdown but should now be available again.
I'm definitely going to mention to my GP that this isn't a countrywide policy, as i'd been led to believe
OP posts:
Original poster
airforsharon · 16/07/2021 15:14

@eccecc @blackheartsgirl would you mind saying where you are in the country? Also @Ginger1982 where your Mum is? No problem if you'd rather not.

OP posts:
eccecc · 16/07/2021 15:28

I'm in Scotland.

AntonMeyersNo1Fan · 16/07/2021 15:33

I was diagnosed Jan 2020, had the 6 loading doses then the first injection in April 2020. I asked at the time if it was dietary and if I could do anything to help and was told no, I couldn’t absorb B12. Then had the injections withdrawn and a daily 1mg tablet. Which seems odd if I can’t absorb it.

I can’t get past the receptionist - they say they can’t advise as I need to speak with a GP. Can’t make an appt though as I need to phone at 8am. Phone at 8am and join the queue, by the time I get through, only urgent appts left and this isn’t urgent. Its like being stuck in a hamster wheel!!

Original poster
airforsharon · 16/07/2021 15:56

@eccecc thanks. I'm in England, so it's not solely my area then.

@AntonMeyersNo1Fan that's crap :/ Can you email your GP directly, or the practice manager? They've effectively stopped your treatment - they need to give you the chance to discuss it with them, and explain their reasons

OP posts:
Thelnebriati · 16/07/2021 16:07

Some pharmacists give you the injections, but it looks like its pretty pricey considering its necessary treatment.
I wonder if they'd do them for you if you get the ampoules on prescription?

blackheartsgirl · 16/07/2021 16:07

I'm in North East wales

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