B12 INJECTIONS not on my prescription - Pernicious Anaemi...

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B12 INJECTIONS not on my prescription

briarhillcat profile image
20 Replies

Hello, hope everyone is feeling OK, or not too bad. I have been self injecting since Covid and still doing that. Buying my B12 injections and the kit.

I need it about every 8 weeks, I can't go three months.

I had my prescription through today with other items and notice that my B12 injections have been removed. I am not sure what to do.

If I contact the surgery they might say I do not need it as I have not ordered it since before Covid. If I inject myself I know when to do it. But know that the doctor will say every three months. I can't go that long.

At least when it was on my prescription, I know I had that back up, but now I am just unsure what to do.

Has anyone else had this problem.?

Thank you.

Briar Hill Cat

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20 Replies
Nackapan profile image
Nackapan

I expect its because you've not used your NHS prescription for a few yesrs if I've understood your post correctly.(Mine was removed but I'd never stopped using the NHS prescription.)

Itd happening alot these reviews.

I got Mine back.

You shoukd be informed if s prescription is stopped. Not sure if that applies if you've not used it ??

If you manage to get it reinstated use it,to keep it running and if you can't get 8 weekly thag you need si Inject inbeyween.

I realise that woukd be 6 weekly.

I woukd try and get a face to face to explain .

Or write in?

Good luck

briarhillcat profile image
briarhillcat in reply to Nackapan

Thank you for your help Nackapan. That was useful.

Saoirse2016 profile image
Saoirse2016

I'm in Ireland, and my prescription was stopped early 2019. I've had bloods taken last year and the GP said my B12 levels were "fine". Thing is once upon a time 500 something something (I don't know what unit of measurement they use!) was low. That's now been lowered to 200 something something, so anything above 200 something something you don't get B12 injections.

I've ordered some online as I'm in a bad state these days

briarhillcat profile image
briarhillcat in reply to Saoirse2016

I am so sorry you are not doing well, but it seems so many things are being discontinued. Everyone with pernicious anemia knows that when your stomach stops producing the intrinsic factor, you cannot absorb B12, and will always need injections. I believe you are right to start to inject yourself. Our bodies tell us when we need it. Yes, some medications can be stopped if they have done their job, but B12 injections are NOT one of them. Good luck with your injections. I have got all the needles and ampoules of B12 and it is easy to do once you get used to it.

Saoirse2016 profile image
Saoirse2016 in reply to briarhillcat

Thanks

I did say to the GP a few years ago that my mother was getting B12 injections 6 or 7 times a year, GP didn't give a stuff...but they always dismiss anything I say to them

briarhillcat profile image
briarhillcat in reply to Saoirse2016

You are quite right, it does seem one of the things that GPs have no idea about. I am so sorry you are struggling and your mum too. It is so frustrating. When it was Covid, I had a letter to say they would not be doing B12 injections and that the Government and 'Professionals' said our bodies could store it for a year! What a load of rubbish. I decided then to inject myself and have always found it so helpful. I have to inject every 8 weeks. I can't go three months (which we were told before Covid) seems like they are just saving money. I do not mind buying the B12 injections. It is so very sad. So many people are suffering unecessarily.

Saoirse2016 profile image
Saoirse2016 in reply to briarhillcat

What I don't get is the GP gave my mother B12 jabs for years, presumably because her blood tests said she needed it. but when my tests are showing I need it, I'm not given it...?

I frequently wonder about my mother's medical conditions, she once has a pacemaker fitted, and I never found out why other than "because she keeps fainting". Um I live with her and I've never seen her faint...

Very odd

briarhillcat profile image
briarhillcat in reply to Saoirse2016

Yes, it is all very strange. Everything has got worse since Covid, and then having a letter being told you cant have injections, but your body stores B12 for a year! I do hope you can get something sorted out. Good luck. And your poor mum too, that was not good.

Nackapan profile image
Nackapan in reply to Saoirse2016

Write in.I've had to becan advocate for my mum on several occasions.

briarhillcat profile image
briarhillcat in reply to Nackapan

Thankyou for your reply. I have a blood test next week and see what they say, but I shall not just let it lie, and I will do what I have to do. I am sure doctors are just not listening to us. Once, I was told by a doctor, that it was 'All in my head'!

Saoirse2016 profile image
Saoirse2016

My mother died several years ago.

She never need an advocate for anything, she was an alcoholic, and a pathological liar, manipulator and gaslighter.

She'd never go to see the same GP twice, and managed to fool a lot of people into believing that she had a problem that was causing her to faint, or fall out of bed

I watched her deliberately lie down on the floor and start screaming that she'd either fainted or fallen out of bed (depending on where she was).

Told doctors this, they turned a deaf ear and a blind eye

briarhillcat profile image
briarhillcat in reply to Saoirse2016

I am sorry to hear that. It must have been awful for you, but you still did your best. I have to have a blood test next week and see what they say. I wish I had not got in touch with them after my B12 injections had been taken off. I could just have carried on self injecting. But I think ultimately they would have got in touch with me. Thank you for your replying to me. I appreciate it.

Saoirse2016 profile image
Saoirse2016

Thank you, she was awful, and I have the PTSD to prove it! She was so sly I didn't realise she was an alcoholic till I read and article written by someone who was raised by an alcoholic - I was thinking when did I write this article? when it clicked in my head oh that's why she

It was the main way she fooled people into thinking she was a lovely woman - by making sure she'd had a drink before she went to Mass on a Sunday, or the hairdresser on a Monday, or shopping on a Friday. As well as making sure she never (or very rarely) spoke to the same person twice.

I'm still trying to figure out how she managed to fool a doctor into believing all of her BS...you'd think somewhere along the line someone would have questioned what she was saying! She had to see one GP several times for whatever secret reason, and that GP to this day (15 years later) is still convinced that "Saoirse is just a lazy b!tch and there's nothing medical wrong with her" despite tests showing clearly that yes, there is something wrong with me

le sigh

briarhillcat profile image
briarhillcat in reply to Saoirse2016

I am so sorry, how awful for you, and so many years you had to cope with that. I am afraid that alcoholics are very good at hiding it. I have known that before, and you find people believe them rather than yourself. I can understand the PTSD. I suffer from that too. Mine is PTSD by proxy. My husband was a Naval Veteran of WW2 and he used to have the most awful war nightmares and I was up and down at night to calm him down and help him. I felt so awful that I could not do more for him. After I lost him, I started having the most dreadful nightmares about water (he spent 15 hours in the Atlantice along with his ship mates) when their ship was sunk. So, basically I have inherited the nightmares about him being in the water and thinking he was back in the war. PTSD is an awful thing, and I do feel for you Saoirse2016. Then we have to cope with trying to get help with the problems that lack of B12 brings. I was told once, that 'It was all in my head!'. But we will do our best to keep going. Look after yourself and I do hope that maybe one day you will be able to cope better from all that your mother put you through. Try to be strong. We are here for each other on this wonderful site.

Saoirse2016 profile image
Saoirse2016 in reply to briarhillcat

((hugs)) to you.

The 'irony' of my mother's alcoholism was she was a merry drunk, and a nasty woman when she was sober (she'd somehow or other realised that when she had a drink in her, she could control her temper, and of course, she was always sober when she was at home)

My Dad was a Second World War veteran, don't know anything about his time during the war as mother wouldn't let him speak to anyone about it. Towards the end of his life his dementia escalated and he thought he was in a hospital because he'd been shot in the leg by a sniper - and he thought I was the nurse.

Fortunately for us both I'd read an article in a magazine about dealing with someone who has dementia, so I played along with his 'hallucination' and we got along fine. But [now sobered up] mother would go into the bedroom and start tormenting him (she was seriously spiteful), and he was getting very upset about "that old woman who keeps coming in here". I told him she was a patient on the psychiatric ward, and next time she came to visit him "tell her to f**k off and she'll leave you alone"

So one day I sees mother sneaking into the bedroom, 10 seconds later I hear Dad yell "would you f**k off!" and she ran back out of the room, and left him alone after that! 🤣🤣

briarhillcat profile image
briarhillcat in reply to Saoirse2016

That is such a shame, sounds like she became like two different people and could fool people. And your Dad being a Veteran, like my Husband did not need all that trouble. Dementia is a terrible thing, and you did the right thing to go along with what he believed was happening. So very sad too. Your mum really was cruel to him tormenting him. That was a good thing to tell him that she was a patient on the psychiatric ward . How wonderful that you told him to tell her to f**k off! , so she left him alone. At least you have nice memories of your dear Dad. I am sorry what your Mum put you all through.

Saoirse2016 profile image
Saoirse2016 in reply to briarhillcat

I'd had to tell him other 'visitors' (his hallucinations) were patients on the psychiatric ward, and I knew mother didn't like people swearing, so...

mother had Narcissistic Personality Disorder, and the damage she did will never be healed over.

briarhillcat profile image
briarhillcat in reply to Saoirse2016

You have to go along with what they say. If they believe it, then we have to 'believe' it too. Such a shame. I am sure that the memories of what your mother did will indeed always be with you. So very sad. Keep your chin up.

Saoirse2016 profile image
Saoirse2016 in reply to briarhillcat

Thanks

briarhillcat profile image
briarhillcat

You are welcome. Take care of yourself.

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