My feed
Premium

Please
or
to access all these features

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
Lordfrontpaw · 31/03/2020 19:48

Not me but a relative. She has considered getting the vet out to give her a shot!

chipsandpeas · 31/03/2020 19:51

tablets will be better in the long run, you wont feel shite when you are due a shot as you are taking the meds every day so its consistent

DustyMaiden · 31/03/2020 19:54

The tablets need to be sublingual to work, I buy them from Amazon.

AnneLovesGilbert · 31/03/2020 19:58

I asked my practise a week ago if they’d prescribe them for me to inject at home while everything’s crazy and they said no and to carry on going in to have them done by the nurse. Not heard anything since. I don’t absorb it at all so tablets would do bugger all to help.

FamilyMatter2020 · 31/03/2020 19:58

No problem. If you want to carry on with your B12 jabs search Facebook for a B12 group to join to guide you how to self-inject. There are lots of us who've had to learn to do this because the NHS doesn't test active B12 & wouldn't treat us anyway Angry

They will suggest where to order the vials & syringes online. I was really nervous for ages, but it's actually surprisingly easy. The needles are tiny too & it's no bother. Most of us self inject subcutaneously daily, instead of one higher dose intramuscularly. Ouch.

Best of luck Smile

Lordfrontpaw · 31/03/2020 20:00

Can you buy the stuff to give yourself the jab?

DustyMaiden · 31/03/2020 20:01

If you don’t absorb it Sublingual tablets still work as they don’t go through the digestive system.

30daysoflight · 31/03/2020 20:04

Pernicious anaemia society website has information on this. B12 injection for people with PA is not a supplement it's an essential, I already have peripheral nerve damage and this would cause more. My next jab is June and if this starts to roll out across UK will cause great harm. Yes sublingual will work as long as dosage is high enough but there is a reason the injections were introduced. The clue is in the word pernicious, meaning fatal.

NumberMonkey · 31/03/2020 20:31

I was diagnosed by accident - had a massive autoimmune flare up so GP ran a whole host of blood tests and realised I was B12 deficient. I also have an under active thyroid and am late 40s so potentially perimenopausal, I think the combination means that the main symptoms were masked or put to other things!

There was no real explanation of why I was deficient - I’m not vegan/vegetarian and don’t exclude any foods except nuts and shellfish. Both the GP and the nurse said it was likely autoimmune related and it wouldn’t matter how much I ate, I would t be able to absorb it. Just all seems a bit odd but as I’m asymptomatic Wink I’ll add another tablet to my daily concoction Grin

OP posts:
toothgenie · 31/03/2020 20:55

My daughter has had to self inject at Uni, two separate Dr surgeries have been very obstructive and unwilling to give her previously regular 2 month doses. She wasn't sure if it was because she moved from England to Wales and there were different prescribing rules? She has been diagnosed since the age of 15 she's now 21. It's doesn't make sense to me, without B12 my daughter could have permanent neurological damage.

Lordfrontpaw · 31/03/2020 21:17

permanent neurological damage Yes that’s what the person I knows has been told! Her SIL is a nurse and has offered to do the jabs.

EnglishRain · 31/03/2020 21:34

Vets cannot get B12 at the minute. My dog was getting monthly injections, has had them for over five years but there has been a shortage for a good few months now. I've got him on a supplement that apparently can be absorbed as well as injections. The whole reason he got them was because he doesn't absorb B12 from his food.

TARSCOUT · 05/04/2020 12:43

Not getting my b12 worries.me more than CV. I get mine every 8 weeks.

BlobbaGob · 07/04/2020 12:43

Yeah, just rung to make my appointment but told to buy some tablets instead! I cannot absorb it! I have been on it 13 years. Very worried, already have neuro symptoms too.

BellaVida · 07/04/2020 12:58

I was having IM B12 injections too for a while and they recommended sublingual supplements when they ended. You can buy alternatives to tablets online- anything from a 1000 mcg oral spray to 3000 mcg sublingual liquid drops.

TARSCOUT · 07/04/2020 13:59

Thanks @BellaVida been looking in to the spray. Might keep the PA at bay!

notangelinajolie · 07/04/2020 14:16

I have a question. How do you all know if you can or cannot absorb? Blood test showed my B12 was low and so I was put on injections every 3 months. GP never said anything about absorbing. Is this something I should know about?

AuditAngel · 07/04/2020 14:23

I had my last B12 injection last month (27th) and asked if there was likely to be issues getting appointments going forward. I was told not.

I have my B12 for the next 4 injections, so 32 weeks worth, just under 8 months. I was told they would provide needles should I need to self inject (I said I would ask my sister, but she lives 5 hours away)

notangelinajolie · 10/04/2020 01:09

Called the GP practice today to try and see if I can reschedule the B12 jab I had to cancel due to me having a high temperature a couple of weeks ago. Practice nurse has been booked in to give me a call on Tuesday. I really need this jab, I'm feeling totally exhausted right, brain fog is very much happening, my ibs has flaired up and my ears have been whooshing - all of which are sure signs I'm due a top up.
Fingers crossed I pass the Corona interrogation screening and double fingers crossed she doesn't tell me they aren't doing the jabs anymore.

DustyMaiden · 15/04/2020 16:42

@notangelinajolie

I had suspected dementia, absences, depression, falls, peripheral nephropathy. It was discovered that my B12 was extremely low. I was treated with normal pills and it made no difference. I had tests and found that I had a form of pernicious anemia. I had injections but hated the fact that they would not let me have them as often as I needed.
I tried the sublingual tablets and found that they do keep my levels up.
original level was 97 last test 714

In answer to your question I would not worry about the cause if you can keep well with the treatment you are on then there is no need IMO to look further

TARSCOUT · 17/04/2020 20:08

Spoke to my health centre and was given syringes to do it myself, well DP will because he's given me injections previously. I am so relieved!

KimTate · 05/05/2020 09:27

Hi all, can anyone help me? I need to find out what size and type of syringe to buy off Amazon so that I can give myself my B12 injection. Does anyone know? and could I just inject it into the muscle of my thigh? and what do you do, just break the top off the vial and suck the liquid up in the syringe? what if there is air in there? don't want to squirt it out and waste the liquid Confused

I am overdue my injection but my GP are not doing them at all, I have rang a few times, I even suggested if they could give me some syringes and I could do it myself (I have some ampules at home) but the receptionist just laughed at me and said no we are NOT recommending that!

Help! Wish my GP surgery would have helped me with this

KimTate · 06/05/2020 10:06

meant to say its 1mg/1ml solution

Kez0777 · 06/05/2020 10:11

I've not heard anything about this, I'm due my next jab 18th June and I always struggle on the run up to it. I'm still working so not sure how I'm going to manage if I don't get it Sad

KimTate · 06/05/2020 10:21

I am feeling dreadful. Dizzy, tinnitus, sore skin, extra knackeredHmm

Luckily I do not work, I dont think I physically could.

Please create an account

To comment on this thread you need to create a Mumsnet account.