Update, letters from consultants - Pernicious Anaemi...

Pernicious Anaemia Society

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Update, letters from consultants

lesbud1 profile image
5 Replies

Well I got the letters I requested from the GP surgery.....from the gastro and neuro consultant but not the print out of the original blood tests just a few results in the letters. I will phone for those tomorrow. Anyway the letters state my haemoglobin 11.6 B12 163 folate 4.1 and ferritin 8 they do not say what they were measured in. that was in the june 2011 by the oct my levels were B12 742 ferritin 47 folate greater than 20. By then I had been having my 8 weekly injections and supplementing with sublingual 1000mcg daily. I am relieved to see that the gastro consultant has written that "the most likely cause of her B12 deficiency is pernicious anaemia, although her intrinsic antibodies were negative which goes against this. Nonetheless as she had a low level and has noticed a definite benefit with B12 injections I would continue these regularly". The neurologist says "therefore her problems are probably related to B12 deficiency which is now being treated". What's the chances of the GP continuing my injections? I should get the results of my last blood test tomorrow and although I know you don't need to repeat B12 levels she did.

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lesbud1
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Nackapan profile image
Nackapan

I think they will be continued. I know how worrying it can be . You have 2 consultants stating your problems are related to b12. I too have been tested negative for PA.

I too had a neurologist say my problems are due to nerve damage from b12. They don't know why at present I'm needing more than the nhs regime.

My G.p says it's not making sense . However I'm on a prescription of b12 injections 'as directed 'I was worried for some time thst if I changed the frequency they would be stopped.

I alsi had b12 blood test that I was unaware of as the time it was put in was too soon for the lab to do it . So the next time I had bloods the lab computer stated it was due. It came back above 1500 as 2 days after a b12 injection. When the gp said about how high the level was I simply said of course. It was a mistake being done at thst time as it doesn't need doing does it.

I'm still questioned. I still keep a log of symptoms. I still state it's the only thing that's helped me so far. Seeing the same nurse helps. I used to stagger in . I now walk in. Ect . I hope you get on okay

Stress is what you do not need.

deniseinmilden profile image
deniseinmilden

As the treatment we get seems to be more luck than judgement, who knows?

The only way we can guarantee to get our jabs is to buy them ourselves and sell inject.

Please keep trying but if they won't help you, we will. You will be OK.

lesbud1 profile image
lesbud1 in reply to deniseinmilden

thank you so much.

fbirder profile image
fbirder

If your GP doesn't continue with injections they should be struck off. You have two experts saying you have a B12 deficiency. One says that you need to continue injections, the other says that your deficiency is bad enough to have caused nerve damage.

If the doc doesn't think that's enough then I would be writing to the head of the practice and the local rag.

lesbud1 profile image
lesbud1 in reply to fbirder

well the neurologist examination all reflexes normal except the ankle jerks which were just elicitable with reinforcement and planters were down going. so I am not too sure if that justifies the neuro's recommendation? I have just rang the surgery and the receptionist says that my bloods were all normal. I have obviously asked for a copy.

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