Giving up hope: Morning everyone. This... - Pernicious Anaemi...

Pernicious Anaemia Society

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Giving up hope

Hedgehogs15 profile image
9 Replies

Morning everyone. This site is like a breath of fresh air. I had a big stomach operation when I was 28. I was told I would have pernicious anaemia because of my intrinsic factor. I had B12 every month and felt fine. About 4 years ago a young doctor told me after my routine annual blood test I didn’t have pernicious anaemia any more and stopped my injections. I’ve just had another blood test to be told I still don’t need them. I feel rubbish all the time. Sore tongue. Cracks at side of my moth. Stomach issues and pins and needles and don’t know what to do next.

I’ve read so many people on this page are suffering too and it’s so unfair. I really hope you get sorted and thank you for listening to an old lady from England x

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Hedgehogs15
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9 Replies
wedgewood profile image
wedgewood

You must have had that part of your stomach removed which contains the parietal cells . These cells produce the intrinsic factor and stomach acid , both of which are required for the breakdown and absorption of vitamin B12 . There must be records of your operation in your medical notes . Demand that these are referred to so that you get your injections reinstated . You remember that The intrinsic Factor was mentioned . With those cells missing , you have Pernicious Anaemia .

I know it’s difficult to challenge doctors who are arrogant and think that they are God , when you don’t feel well . But please do that ASAP . . Please let us know how you get on . As a member of the PAS , you could get help in dealing with your ignorant doctor , who is affecting your well being and health with his ignorance , and witholding an extremely cheap vitamin injection .

Many of us on this forum are forced to self-inject, because of ignorance l l

That has to be the last resort ,and shouldn’t have to happen .

Best wishes .

Hedgehogs15 profile image
Hedgehogs15 in reply towedgewood

Thank you so very much for all your help and advice. My husband is going to book an appointment with another doctor next week and he is coming in with me to ask questions. I will write down what you have said also. It was mid seventies when I had this operation so I wonder if I can still get my records. The doctor told me it said I had pernicious anaemia on my files but still said I don’t need B12. Take care. Thank you again

Nackapan profile image
Nackapan in reply toHedgehogs15

If its on your medical notes you shoukd get your injections reenstated ASAP.. Good yiu getting a face to face

Loads of info on here go armed.

Nackapan profile image
Nackapan

I'm sorry to hear hear that. A monthly b12 injection is not much to ask for. Once on injections you do not need levels checking .Write to your doctor and simply state you need b12 I jections that kept you well for years .

pvanderaa profile image
pvanderaa

Dr was wrong. You need B12 just to maintain and function. Your blood levels for B12 should be high just to maintain and function. With normal B12 levels, nerve damage progresse. High B12 is not a bad indication for you since you have injections and take supplements.

I had stomach surgery back in the 90s and my B12 deficiency wasn’t diagnosed until 2008. I’ve been on B12 injections since then. First monthly hydroxo B12 in the UK and now weekly CyanoB12 here in the USA. I went to self injections and the Dr tests my blood annually for everything else but B12 because it will be high.

IF and parietal cell antibody test will be normal so you don’t have the hereditary brand of pernicious anaemia. You however have an acquired B12 deficiency from the stomach surgery and that doesn’t have a name per se.

Do you take B12 supplements? Or folic acid and a daily multivitamin?

Parlay profile image
Parlay

The wonderful people on here are so so knowledgeable and supportive. Quite obvious you are suffering at the hands of idiots Drs alongside the rest of us. Please source your own b12 ampoules for your own well-being. From a fellow old lady in the U.K. 😊

coat2003 profile image
coat2003

2nd 3rd opinion, pls before withdrawing. if stomach acid reflux AND NOT SERIOUS,address that.why I amsaying it, my late husband suffered from it and ONLY A PILL A DAY KEPT IT IN CHECK.pa, he wasn't diagnosed, but had it all his life,vit bs ARE BLOCKED ABSORPTION if reflux...good luck with a new doc!mx

coat2003 profile image
coat2003

I am furious, nobody seems to be bothered. My hubby passes on suffering from lymphatic cancer and his all digestive system suffered.so many lymphs around, unreal.

coat2003 profile image
coat2003

as NOT MEDICALLY TRAINED i didn't realised so serious.wedgewood is right.mx

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