Help, I know I have pernicious anaemia, why cannot my doctor diagnose it?

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My partner has all the symptoms of pernicious anaemia and her condition is progressive during the last 6 months. She is getting worse by the day. Too many visits to gp and specialists have not resulted to any diagnosis. So far bloodtests have shown B12 as well as folate in the normal range. Her mother was diagnosed with pernicious anaemia some 15 years ago after (also) a lengthy diagnostic process. According to gp all bloodtests have been done and nothing warrents the pa diagnosis.

-Has anybody experienced the above and how did you go about it to get a diagnosis?

-Is there a consultant in the UK who has build up some expertise on the matter?

-If you recognise the above and can advice her please do so!

Over the last couple of months she has seen herself change from a larger than life, energetic woman, into a person who barely drags herself through the days. The level of despair that this brings makes this mail a 'cry for help', as the medical professions is not yet responding.

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  • Posted

    I had a similar experience. My local hospital said all the tests were normal. I had them repeated at a Nuffield Hospital - extremely low folate AND B12. I had duplicate samples analysed at both hospitals - local negative, Nuffield positive. The tests have been repeated at a different NHS hospital - negative. After investigation the local lab had a history of misdiagnosis on these tests. So get your GP to try elsewhere. Or go private.
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  • Posted

    hi kos, its so awful your partner is suffering the way she is, I don't know if I can be of any help but I will try. I am a senior dental nurse and newly qualified phlebotomist also, so from a dental perspective we can see signs of anaemia's in the mouth, white looking and possibly cracked tongue are the main signs and from a 'blood' perspective and I'm by no means trying to discredit the people taking your partners blood samples, but errors in drawing the blood can impact on negative results too. my advice would be, if your not having any luck with the doctor and she does have the signs I have mentioned in her mouth take her to her dentist, they might refer straight to the hospital and you can cut out the middle man! pernicious anaemia is awful we have a few patients with it and have to have vitamin b jabs, my nan also suffered in her 20's and 30's and because nothing was done she ended up needing a blood transfusion, so it is a subject close to my heart. she said she got so weak she couldn't even lift a kettle. so I can really see why this process is so upsetting for you. hang on in there guys. other than that I would recommend plenty of green leafy veg and lean red meat.
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  • Posted

    Hi Monita and David606

    Thank you for taking the time to reply to our discussion and this problem we are facing. My partners blood tests have been taken 3 times now by the same GPs office. We will be following your advice and now looking to have these done elsewhere. When I mentioned the white cracked tongue my partner recognized it straight away showing me these signs. She has had this for many months now. Will follow this up also. Thank you again for taking the time to think of other peoples situations, your comments mean a lot. If anything else comes to mind, please let us know as we are at a loss and grateful.

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  • Posted

    You are very welcome, glad I could be of some use. sounds like your partner really needs a vitamin B iv infusion. you never know, the dentist may well be able to put some pressure on! I know we would! please keep me posted as I would really like to hear that this situation has a happy ending. she is suffering so needlessly, and as it pains me to say, like anything in the world, you gets what you pays for, and although the nhs has been a blessing in its prime unfortunately the bureaucracy and red tape is failing it, sometimes to get the answers we need to hear going private is the only way x
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