I have been on B12 injection for ten years. In lockdown I needed my injection which I have every 3 months. I was told I would be on this for life . When I called the surgery the nurse said I don’t need my B12 as I’m not Pernicious Anaemia anymore. So to just take the tablet . I did a blood test and my B12 is high and I was getting pins and needles in my fingers feet etc . I spoke to a Doctor who was no help at all . He then said oh you weren’t Pernicious Anaemia anymore so I’m on nothing now .
This is only my first day on nothing no B12 supplements at all .
Can anyone relate to this ?
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Airtime2020
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Many forum members in UK have reported injections being stopped, delayed, frequency reduced, swapped for oral tablets during pandemic.
Check your GP surgery is using the latest BSH guidance on B12 treatment during pandemic, published 24/4/20. See next link to a PAS news item that explains the guidance.
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.
so should still be injections for B12 deficiency caused by absorption problems - they suggest very high dose (10000mcg) tablets if injections aren't impossible but that neurological symptoms returning is a red flag on that.
They certainly don't suggest treatment based on symptoms.
As PA is an auto-immune disorder of the gut that affects the absorption of B12 it is treated by B12 injections. The underlying problem is NOT cured by the treatment - hence injections for life.
The metabolism of B12 post injections isn't fully understood though the need for much higher serum B12 levels post injections is a well observed phenomenon that is currently subject to some interesting research studies but is a long way from being understood.
Suggest you share the BCSH guidance (there was a lot of very confusing earlier guidance that the GP may still be referring to and also point the doctor and the nurse to the area of the PAS website aimed at helping medical professionals improve the diagnosis and treatment of PA
Thank you... I lost faith in doctors years ago ... I spoke to a Indian Female Docter... I said can I have prescription for B12 spray or a ..B12 tablet that goes under your tongue and desolves .
She said I didn’t know that .. omg I said you are a doctor and don’t know that !!!
My GP has also refused my injections due to the lockdown no matter what I said. Thus I contacted the Rheumatologist I am under and she was horrified and contacted my GP within the hour & im now booked in for my injection. Thus are you seeing any other specialist who could possibly intervene in your behalf?
Hi thank you for your reply I’m not with any other specialist. I just get my injection, they did say my B12 is High . So I’m not on anything I am just going to see how I go .
Hello, I am sorry you are not feeling good and unsure what to do, but if you need B12 injections, anything taken orally will not work, and as to your blood test saying your B`12 is high, I would not taken that literally, mine was tested and said to be OK and I did not need injections, but I have heard the same from so many people. You blood test cannot always be relied upon. Having high B12 blood tests does not mean that you can stop treatment. All GPs ought by now to have been given the information from BSH. They are the ones who know best. And, being told you are not Pernicious Anaemia any more is just not true. If you have PA, it is for life.Good luck. Briarhill cat
Thank you and for the information you have just given me . Doctor said if you think we will give you a B12 we won’t!! I will see how I go and if I end up ill I will seek a Soliciter.
Take care of yourself and do not let yourself get too ill before you make a decision. It is not easy. I never thought the day would come when I would have to self inject, but I did it for the first time some weeks ago and got on fine. Take care. Briarhill cat.
I had the same thing with my GP and they deregistered me as they said Patient and Dr relationship had broken down because of me politely challenging them over withdrawing my 8 weekly B12 injections. Just registered with another GP and now being sent next week for B12 and,PA blood tests . ..it is the pits to be Ill and get no treatment. Good Luck
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