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hemochromatosis

Posted , 6 users are following.

sharon26194
sharon26194

I have just been diagnosed as having haemachromatosis and really scared as i dont like needles and dont know much about this and the doctor only told me i had it over the phone  i am not sure what to expect but i am really dizzy and sick with it and seem to sleep alot but i also get awful thirsty the doctor wont give me medication as she says she has to see how to deal with it i never usually go on forums to speak but hope someone can tell me what i have a head of me as i have not got a clue

2 likes, 10 replies

10 Replies

  • HazzaMcBazza23
    HazzaMcBazza23 sharon26194

    Posted

    Sharon, please don't stress about this. There is a drug alternative to venesection. I can't tell you much about it ss I've always opted for venesection. I wasn't fond of needles but you easily grow used to it and the people at the blood bank are FANTASTIC and look after you gently and really well. Ask your doctor about iron chelation therapy. I hope she's not told you much aboit it at this stage because she's familiarising herself with the options open to you. Hope all goes well fir you.
  • sheryl37154
    sheryl37154 sharon26194

    Posted

    Educate yourself with appropriate information by googling 'haemochromatosis' and look for the haemochromatosis organisation/society in your country.  Phone them, talk to them, and ask them to send you literature about it.  Don't just count on blogs like this, you have a lot to learn.  Be well armed before your dr gets back to you, so that you know the difference between good treatment and bad treatment.
  • sharon26194
    sharon26194

    Posted

    Thank you both i have checked on google and saw things about it and feel a bit more informed but it more the stress i feel under as i am getting it hard to cope with the pain and feeling of being sick and dizzy and the feeling of being tired all time
  • megan36105
    megan36105 sharon26194

    Posted

    Sharon,

    In response to what HazzaMcBazza said about the drug alternative to venesections (where I am we call them phlebotomies), I was told that that particular medication is only given when venesections are nearly impossible (nearly impossible meaning something like your blood clots immediately and it can't be withdrawn normally, maybe your body is too fragile to handle donating blood, your veins are too scarred, etc. but maybe it's different where you are, I don't know). Being that it seems your only issue is that you're afraid of needles, if you live near me, I wouldn't get your hopes up about being able to take it.

    That being said, I do want to mention to you that needles also are not my friend. My veins are deep in my arms (you can't see them at all except near my wrists and my hands) and they're also small. I was diagnosed four years ago and I've had numerous phlebotomies. There has never been a time where I've gone in to get it done and it's been unsuccessful. I've always been just fine. I will admit that it hurts a bit, I can't lie about that part, but it's been fine.

    Where I am, and maybe it's the same for you, the nurses are aware of my anxiety issues (which I do struggle with) and they have offered me to take Zanax (maybe that's offered where you are?) as temporary relief from my anxiety. I've never taken it though, I want to prove to myself every time that I can do it on my own.

    Another option is to ask that they give you an IV bag at the same time. I find that makes me feel a lot better because then the fluid thats being taken out of my body during the venesection is immediately being replaced.

    The thing that you have to remember is that being diagnosed is an extremely positive step. You're so lucky that you know what's going on with you now. A lot of people struggle for ages without a diagnosis and you're one of the lucky ones. When it's properly treated (and so long as you caught it early enough) having iron overload won't hurt you. The needles prick, but that's literally the worst that will happen to you.

    • sharon26194
      sharon26194 megan36105

      Posted

      Megan my veins are very small but everytime i go to give blood they have to try five or six times before they can get any and even then it is not that much but i dont lnow about where you are but doctor says there is notthing that can be done for me just to rest but another doctor says plenty of rest or o could be dead in two years that why i joined this forum but when i googled it and read up on it well it never said that i am a woman with five children and one or two of them has problems and i need all my energy for th
    • megan36105
      megan36105 sharon26194

      Posted

      Hey Sharon,

      My veins are the same way. They're very deep and also quite small. There have been maybe... 6 times? Where they've managed to find a vein right away but the rest of the time it requires a few pokes. It's painful, but in terms of the kind of things that could happen to me, it's quite minimal, which is something that I always have to keep in mind. But that's also why I always request an IV bag at the same time. It helps keep my anxiety levels down. Plus, I can end up sitting there for... maybe an hour or so all together, so it just makes me feel better to have that saline fluid pumped into me during that time.

      How old are you? And do you know what your ferritin and iron levels are right now? It's a bit irresponsible for a doctor to use those exact terms, and then to not give you more information. "You could be dead in two years without treatment." Okay, so explain the treatment please, doctor. You can't just leave me hanging!!

      Read up on it as much as you can, the internet is a great resource when it comes to learning about iron overload and what to do/what not to do.

      When's your next doctor's appointment? If you haven't made one, make one. And make them give you the answers that you're looking for. You should also request a printout of your test results so you know exactly where you are.

       

    • megan36105
      megan36105 sharon26194

      Posted

      By the way, I live in Edmonton, Alberta, Canada and I have my treatment at the University of Alberta Hospital. However, at the end of August I'll be moving to Victoria, British Columbia, Canada, and I've been referred to a new hematologist, so hopefully I can get the same kind of service there.

       

    • sharon26194
      sharon26194 megan36105

      Posted

      thank you megan i live in northern ireland and i have appointment with my doctor on friday morning so will ask then for all the information and will ask them to speed up with all the appointments i need
  • sheryl37154
    sheryl37154 sharon26194

    Posted

    Sharon, I was so relieved to get a diagnosis after 9 years of severe symptoms, as well as a diagnosis that can be treated so easily.  I always think it is so much better than having chemo or radium therapy.  I feel so much better after my (now) maintenance 3 monthly venesections, that I look forward to them.
  • scott34
    scott34 sharon26194

    Posted

    I was reading the posts and you are lucky that they found it early. When they found mine I had already developed cirrhosis 
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