Pernicious Anaemia Society

Why won't doctors listen

My doctor will not let me have my b12 anymore than every 3 months . I used to have it every 8 weeks and she decided it's licence for 3 months only . So thats all i can have . She did blood test at 7 weeks after injection and said my b12 normal but I am anemic. She didn't follow this up so I'm Taking over the counter iron . I have terrible pains in my joints and muscles .So tired all the time . Twitching In my legs and feet. .Can't sleep well . Tearful and this heavy feeling . Should I change my doctor 😢

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Hi, I am in the same position, having 12 weekly injections and getting symptoms about 8 weeks after each injection, I already have nerve damage in my legs and constant numbness in my toes, after 8 weeks also constant tingling in the ends of my fingers. I seen a GP last week, and was told they only retest B12 levels every 2 years, and that is due in 12 months time. After a fair bit of arguing and some assertiveness on my part she agreed to get the opinion of a neurologist. Hopefully the waiting list for this won't be too long. The twitching in your legs and feet could be the start of nerve damage, so I would insist on seeing a neurologist as a starting point. If you get a refusal you can complain to your local health board (presuming you are in the UK) and ask them to intervene. A GP has to give a very good reason to refuse a referral, although the consultant ultimately decides where you go on the waiting list depending on what info the GP sends them.

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Hi lindar1710 and scadman if you are both in the UK and are having neurological symptoms then the N.I.C.E guidelines on the treatment of B12 and Folate deficiency say:

Treatment for B12 deficiency

How should I treat a person with vitamin B12 deficiency anaemia?

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

google.co.uk/url?sa=t&rct=j...

Also get your Folate level checked too. There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. . Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. for more than 45 years.

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I was given this information before, and checked the NICE guidelines, when I mentioned to my GP she said they are only guidelines, not mandatory instructions. I have to tread a bit carefully at the moment as I recently scored a black mark with my GP for telling a Consultant Gynaecologist she was a waste of time and space when I said the repair op she did wasn't right, I paid £180 for a second opinion with another gynaecologist who has since done the correct op. I am just glad at the moment for a neurological referral.

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So your doctor doesn't believe in practicing "care excellence" preferring to slouch along in her own incompetent way.

I'm fuming..... :(

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well,you could go out of the frying pan..... I had to find a neurologist who said I had to have more frequent injections and that overruled the gp!

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Buy them from mycare.de it's easy, reliable. I take. 0.5ml daily don't rely on NHS they are ill educated when it comes to b12.

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