I'm due to have a B12 injection this Friday. I went to pick up the prescription from my GPs and they said I don't need them any more (I've been having them every 12 weeks for around 4 years) as my B12 levels are fine. I said 'I do need them, i'm exhausted and can't cope with life' They said a doctor will ring me this morning.
I'm now awaiting the call but what do I say. How do I explain that I stll need B12 even though my levels n my blood are apparently OK?
A quick reply would be helpful.
Thanks
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Liz0808
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Thanks Nackapan - sorry to hear you are having a bad time of it as well. thanks also Jillymo . So the the doctor rung. They seem to think that my level - 391- is OK and that to give me more B12 wouldn't be safe - said I would be 'zoned out'!! But as I was so exhausted I could have the injection this time but will take my bloods again and will look for other causes. The doctor also said that she had pernicious aneaemia so knew all about it. I think she said I had negative IFAB and was implying that I don't need B12 for the rest of my life. I was exhausted to argue - so will have to do that once after the B12 i get on Friday takes effect.
I am so sorry and appalled. It is understandable that you are too exhausted to fight. Firstly, they shouldn’t be checking your levels and secondly a level of 391 is not ok. If they are going to check it - it should be sky high 1000 +.
Have your vitamin B12 injection. I do hope you feel better.
I suggest you track down the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board and compare the info with BSH/BNF/NICE CKS links below.
I know you would like a short answer but if you can manage to wade through the threads below there may be other info that might help you to argue against their decision.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
really sorry to hear this, I am expecting the same when I return as the HCA ignored my notes and requests and gave me a B12 test as well as a begrudged B12 jab last visit.
Complaint letters were sent but not even acknowledged 😟
So sorry you have to deal with nonsense. All the best to you.
(Sleepbunny probably posted them already -- but reposting because they are great links - concise & with footnotes.)
I was told that [here in Ireland] the HSE changed the 'standard' for low B12, from below 500 something something to below 200 something something (sorry, don't know if it's mmol. or what!), and that GPs aren't telling patients what their numbers are...
I've been told mine is 'fine' but I feel terrible, I've been using an oral spray the last 6 months which is helping a bit, but I'm beginning to think I'll need to start self injecting
If I ask them anything they get very antsy at me. I'm due to get bloods done (for diabetes) again soon, so I'm going to speak to a different doctor and see if they aren't any more help. I'm really suffering at the moment from pain and fatigue.
I've already printed off information about PA and shown it to them, I was 'told off' for using the internet
I can't see why any politician would be interested in helping me (they're totally useless over here!) 🤷♀️
I will try another doctor as the one I've been seeing the past 5/6 years has clearly been talking to my mother's doctor and going along with whatever she's saying about me 🙄
My mother was also given the same excuse that she didn't need more injections as 'blood' was fine.
Both my sister and myself thought that was good.
Unfortunately (no internet at that time) that decision by the GP caused my mother to develop stomach cancer and we had to plead for more pain relief (we were caring for her at home) towards her 'end of life',
I also have P.A. but my GP said I can have as many B12 injections that I feel I need.
I'm so sorry Liz0808, that they are doing this to you. Do you self inject at all?
This is a terrible position to be in. I'm so sorry.
Some people can afford to SI. But what about the ones that can't? They have to suffer at the hands of incompetence. They have nowhere to turn. They can't afford to save their own lives. They don't have a choice!
This is a matter of life. What the 🤬 is wrong with these people? I'm so angry for you. I want to reach through the forum and hug you. I wish i could give you the b12 you need. I can offer no help, just support.
Although, I'd be willing to ship you an ampoule or two and a syringe. Is that possible?
Telling you that you have enough B12, and so you don’t need any more injections, is like telling you that your stomach is full, and so you don’t need any more meals.
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