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haemachromatosis

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Guest
Guest

Hi there. I am 56 and only found out I had the above 18 months ago just by chance. I have decided through past experience that you have to manage this blood disease relatively by yourself. I have had quite a few scans on my heart and liver but never found out if they were ok or not. In December my consultant sent me away with two sheets for blood tests in my hand for June and November and would not be seeing her again until this December. This is all well and good but about 2 months ago I started feeling very tired and my joints were killing me. When I chased her for my results last week she said my iron was higher than she expected and I needed venesection asap and same again in 3 weeks time. I nearly passed out on the bed after my venesection and threw up. The last 4 times I have passed out 3 times within a week of having my venesection. I am not waiting to see her in December because I do not have any faith in her and through my doctor I am being transferred to another consultant. I am curious to hear if anyone else passes out after venesection and also other peoples feelings on the treatment we receive.

1 like, 4 replies

4 Replies

  • Guest
    Guest

    Posted

    I was diagnosed about 25 years ago and had to have blood taken twice weekly for over a year until the ferratin reached normal levels. At first the procedure to take blood was disturbing, but I quickly got used to it and after a short time hardly noticed any negative affects. It was as if the body adjusted to the experience as it would to high alititude living after a while. I now have blood taken once evry six weeks.

    Be of good courage - now that you're diagnosed any further damage from the ferratin should be halted.

  • wilhelm
    wilhelm

    Posted

    Hi there I was diagnosed October 2007 I was fit and could cycle to and from work about 12 months before I was diagnosed started feeling very tired so all the endless tests. Not happy with first Consultant moved on to a second much better and understanding. Found the first month or more of venesection painful and it made me feel worse not sick but almost. some people are OK after, some are not, join the Haemochromatosis Society UK. They have been a great help to me just a phone call away. my GP has been a good in understanding the condition but on times seeing different doctors I feel like a Guinea pig. Its hard but try and keep your chin up.
  • MaryT
    MaryT

    Posted

    Hi Christine,

    I have almost passed out twice after venesection, and felt awful the rest of the day, kind of lightheaded. I have had 6 sessions so far. When I used to be a blood donor, I occasionally had this problem, but got over it by drinking 2 pints of water beforehand.

    However, inspite of doing this, I get problems while having venesection, but I think there is another element in that both times I nearly passed out, I was worried about it taking too long, as people were waiting for me. Last week was a record; it took over 4 hours as I had to wait for a blood test to come back before they would venesect me, in case I was anaemic!!

    Hope things improve for you!

    Mary

  • Guest
    Guest

    Posted

    Christine

    I pass out as well but was told I was imagining it increasing fluid intake does help a bit but doesnt solve it completly like you I feel very much upon my own How were you able to arrange a referral to a different consultant as I am told it is not possible.

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