1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Hemochromatosis... different spelling from UK

Posted , 3 users are following.

john57113
john57113

It's genetic. The treatment essentially the same values as UK. Hematologists who treat this in USA are usually also oncologists. I have had labs then subsequent 500ml phlebotomies X2 per month until the blood ferratin level is below 50. Took over 12 months of bi- monthly labs and phlebotomies until ferratin level is below 50. Then could go to X1 per month!

Info I have here (USA) is condition is cinsidered chronic and life long.

0 likes, 3 replies

3 Replies

  • sheryl37154
    sheryl37154 john57113

    Posted

    John, you will find a lot of information about this disorder on this forum contributed by others with HH, based on their experiences.

     

  • samantha27302
    samantha27302 john57113

    Posted

    Thanks John.

    Just need to start getting rid of this iron then hopefully I’ll start feeling better. It’s the waiting that gets me. I starting seeing my Dr beginning Jan and although I’ve had blood tests & MRI scan, I’m still waiting for everything else. 

  • miller.jones
    miller.jones john57113

    Posted

    If you have hit under 50 why are you going once a month you should be able to go once every 3-6 months.

    Once the levels have dropped they take longer to climb then if they are already high.

    Regarding post above why are you waiting they should be getting you in straight away if you have been diagnosed with HH the other tests like mri liver/kidney/heart can be done while receiving treatment.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.