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Waiting for first withdrawal

Posted , 5 users are following.

gina38206
gina38206

Just curious on how fast symptoms go? My only symptom is tirdness but it's really interfering with life. I have 3 young kids and am worn out. Levels are only at 265 so I can't imagine how someone with levels in the 1000s must feel. Unfortunately I'm on waiting list with my hospital.

1 like, 15 replies

15 Replies

  • maureen99963
    maureen99963 gina38206

    Posted

    The only symptoms that improves for me was my liver enzymes normalized for the first time in 20 years and my skin no longer was 'tan' year-round without sun exposure.  My joint pain and energy levels have not been affected by all the phlebotomies I have had over the last three years.  

    • gina38206
      gina38206 maureen99963

      Posted

      Thanks for your reply Maureen. Really hoping it helps with tiredness. Am going part time in work soon so hopefully that will help. How often do u have phlebotomies now?

      Gina

  • philx
    philx gina38206

    Posted

    Hi Gina

    Personally I actually feel worse since starting phlebotomy,

    I'm tired all the time, either lightheaded of really dizzy,

    I am 66 but very active, I was going to the gym 4 times a week but

    I have had to stop going not having the energy, I am going for my 6th

    Phlebotomy tomorrow, then seeing the hemotologist 19.8.16 hopefully

    I will have dropped by around 500,with just over 500 more to get to a

    reasonable level, I am hoping I will be able to have fortnightly as opposed

    To weekly, but it will take as long as it takes,it has to be done.

    I hope you start your treatment soon and feel better

    Cheers Philx

    • gina38206
      gina38206 philx

      Posted

      Thanks for your reply Phil. I'm hoping because my levels aren't too high that it may improve my tiredness. Nervous at the thought of it as I've never even donated blood so not sure what to expect but hoping to get called soon. And I'm the same...haven't been able to exercise just so tired.last thing I want to do is go for run. But weight gain is driving me mad. Amazing how much it affects things . Thanks again Phil.

      Gina

    • philx
      philx gina38206

      Posted

      Hi Gina

      Please once you get your appointment for your first venesection

      Don't worry you have had blood tests done before it's not much difference

      To that,they find a suitable vein a sharp scratch, then you just lie

      There for how ever long it takes,the more you worry it will push your

      Blood pressure up ,and this may mean you have to have a needle in

      The other arm to give you fluids,it was Terry's first time last week and

      He was exactly like you very apprehensive, I told him to take some relaxing

      Music with him,he cannot wait to go back for his next one.

      You have to focus on the fact this is for the greater good,to catch it

      Before it starts to damage organs ,when treatment would become more

      Severe,so I would rather put up with less invasive treatment.

      Best of luck

      Cheers Philx(just preparing for number 6 at 10.30 am)

    • gina38206
      gina38206 philx

      Posted

      Thanks Phil

      your right and it has to be done so no point worrying. I was reading terrys post to and its good to hear. Best of luck Phil .

      Gina

    • gina38206
      gina38206

      Posted

      Hi Phil

      Just a quick question you may know answer. Because I have haemocromatosis does that mean 1 of my parents have it or that they are carriers? My dad has been tested and he is a carrier but my man has yet to go they are both in there 60s. Thanks Phil

      Ginax

    • philx
      philx gina38206

      Posted

      Hi Gina

      The only way to find out is to have a genetic test,I am awaiting the

      Results of my genetic test???but the are 99.9% certain mine is inherited

      From either my parents (both now dead) or futher back in my family

      My 2 sisters have had ferritin tests but they are the opposite anaemic

      My other sister has not been tested.

      Get this test done(but I think I read somewhere one off your tests have to be quite high before they will do the test)

      ,and advise immediate family to have a ferritin test

      Of mike might be able to help more.or phone the hemochromatosis society.

      Cheers philx

  • maureen99963
    maureen99963 gina38206

    Posted

    My father has he same H63d gene and our daughter inherited two H6ed genes from my husband and me.   Both my paternal grandparents had both and I wonder if my great grandfather died of cardiomyopathy as a result. My huband's father was likely a carrier and his g-grandpa was likely a carrier.  All of them were of Irish ancestry and Hemochromatosis is called 'the Celtic Curse."

     

    • gina38206
      gina38206 maureen99963

      Posted

      Hi Maureen

      Yes my dad's result came back fine. He is carrier but doesn't have it. So I'm wondering is that where I got it from or should I make my mam get tested anyway just incase. we're all 100% iriah also 😃thanks for your reply

      Gina

    • maureen99963
      maureen99963 gina38206

      Posted

      If you know you have two genes you got one from your dad and one from your mom.
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