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Do symptoms get better with phlebotomy?

Posted , 4 users are following.

nickemj
nickemj

I'm 37 and just been diagnosed with HH (C282Y Homozygote). I started developing symptoms last year including fatigue/lethargy, upset stomach, joint pains, a constant background headache and regular migraines, which are horrible! 

I've been referred to haematology and I'm currently waiting for an initial consultation.  I've been told I can't go and donate blood or anything until that's happened (which could be up to 7-8 weeks).

Do symptoms improve after you start treatment?  

I'd be really keen to hear from others who have started treatment and how long it took to start noticing the effects of treatment

Many thanks!

0 likes, 6 replies

6 Replies

  • Chris8968
    Chris8968 nickemj

    Posted

    Yes, when your ferritin levels are under control your symptoms will go away unless permanent damage has been done. 

    If your symptoms remain after you are in maintenance it is something else that you should probably get checked out.

    My ferritin level started at 1887, now it’s 40 and all my symptoms are gone.

    • nickemj
      nickemj Chris8968

      Posted

      Thanks Chris - that's a relief to know!  I think it's been caught early (iron levels at 400, liver function etc all ok) so hopefully venesection should do the trick

      Is it the same experience as donating blood?

    • Chris8968
      Chris8968 nickemj

      Posted

      Yes. The lab tests your levels first and then it’s just like donating blood. I had to give a pint a week for 16 weeks before my levels where where the doctor wanted them. After a while, giving that much blood did take its toll but it was manageable.
  • Sgt.lindalee
    Sgt.lindalee nickemj

    Posted

    My Mom has HH, she gave blood for a few years every 6 wks or so(she got tokens for milestones of donation) she had NO permanent effects & for YEARS now she has had NORMAL levels w/o bloodletting, I have my levels checked once a year, last time they were low...there are things you can do to help try & keep levels lower(it might help keep it from getting too much worse...you definately don't want to do things that ADD to it) like eating less red meat, tea & coffee have tannins so that can keep you from absorbing so much iron, avoid vitamins with iron, fortified iron cereals, extra Vitamin C(opposite effect...helps you absorb MORE iron which you dont want) You will still probably need to have regular blood draws but, you can do those things until you see the specialist...Best Wishes to you, hopefully soon you will be feeling better, the headaches should go away quickly, iron bulks up blood volume which can cause headaches & other issues that can be relieved fairly quickly once you start treatment💟

    • nickemj
      nickemj Sgt.lindalee

      Posted

      Thanks Sgt.Lindalee!  It's good to know things do improve once treatment gets going, and that it's possible to prevent them from creeping back up too quickly cheesygrin

    • Sgt.lindalee
      Sgt.lindalee nickemj

      Posted

      Best Wishes & try to be encouraged, take it a day at a time💟

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