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Venesection Illness

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chris52931
chris52931

Hi All, new to the forum, ive had HH for about 6 six years now, my levels were over 3000 to start and i had the agressive treatment to lower the levels and have been on maintenance ever since,im touching 60yrs old now always feel lethargic tired etc, but over the last 12 months when i have my vene,s i feel very very poorly indeed afterwards, this can last anything from a week to a fortnight and im completely out of action and look ghost like, its not anemia ive been over deironed in the past and know how that feels,but its got to the stage now that im too ill to work, ive requested in future to have my vene,s every 2/3 weeks instead of weekly, does anybody else suffer this badly after the vene,s it never used to effect me this way,

Regs Cris

0 likes, 6 replies

6 Replies

  • selina58849
    selina58849 chris52931

    Posted

    Hi Chris, it sounds like you are saying you still get blood taken out every 2 to 3 weeks even though in maintenance? If so I would just have the one venesection to bring iron levels down and a blood test in 2 weeks after that to test levels.
  • sheryl37154
    sheryl37154 chris52931

    Posted

    Hi Chris, so often I am astounded by what I read in this forum.  As your ferritin level goes down, the frequency of vx should be reduced.  You should not be having vx weekly by this stage.  Have you been de-ironed <50?  If so, you should be on 3 monthly maintenance vx.

    Having a low ferritin should not be affecting you.  I am maintaining low 20s in order to get my TS% down.  I have been 8 and 13 with no ill effect.  If you haemoglobin (Hb) is low then you are anaemic and should not have a venesection until that is built back up.  If you are still having a weekly vx then no wonder you are feeling this way.

    Find some educational material regarding this for your dr/haemotologist and discuss it with him.  Also, you probably need some Vit B12 injections, folate, and Vit D3 drops.  Tablets are rarely effective.

    BTW, I am now 67 and have been having vx for 20 years.

  • deb94549
    deb94549 chris52931

    Posted

    How long did it take you with weekly phlebotomies to get to good level? I started at 3015 been 5 months and I've been rollercoastering... Got down to 1901 but back up to 2055. My right arm is giving up...I have a huge bump n bruise from trying to get the needle into the vein. Had to go to the left arm.

  • chris52931
    chris52931

    Posted

    Hi again,thanks for the replies sheryl/selina/debs, sorry maybe wasnt clear in my original post, i am on maintenance now and have been for few years, i go to the hospital every 3 months have the blood tests and get the levels checked etc, im usually up to 2 or 3 hundred by then so i have usually have to have 2 to 4 unit  off to get me back down under 100 where they like to keep me, where as before this wasnt a problem, having the vene,s now really make me ill.Dose anybody else have this problem or could it be age related? ps Debs it took me about 4 months to get down under 100 when first diagnosed but it also went up & down through this process which i assume is pretty normal but at the time seemed odd, i also had the liver biopsy then and have some liver damage with been diagnosed late.Im tired all the time and have zero energy, i hate this condition.and many people and medics dont seem to understand it fully either.

    Regds Chris

    • sheryl37154
      sheryl37154 chris52931

      Posted

      Hi Chris, perhaps a regular 2 or 1 monthly may be needed.  Do you have any infection, inflammation, malignancy which may be keeping your ferritin high?  For example, how is the liver damage going?

      My fatigue and body pain was so bad even though I had been de-ironed that the only relief was to stop working.  My husband got Hodgkin's Lymphoma and that sealed my reluctance to stop working.  Yes, our whole financial life had to be re-evaluated with both of us not working.

      Difficulty with vx (my blood becoming so thick, and my veins becoming resistent), led me to try 100mg aspirin.  It made a huge difference.  Not only with blood flow, but it seemed to flush toxin iron out of my cells.  I felt lighter, walked faster, and got more done in a day.  I also found from reading research by a French team in Rennes (they are doing a lot of work on this) that those who have maintained a high TS% for more than 6 years have a more toxic problem.  Vit E  was suggested to help repair the mitochondria.

      My haemotologists expressed doubt about my complaints regarding fatigue "because I was de-ironed".  I now refer them to the findings of the research team.  I now continue to have vx even though my ferritin is in low 20s, because it is helping bring my TS% down.  Sometimes it is even normal!  (After 20 years of treatment - and I too had a late diagnosis despite my complaints).

      I think I have also told you of the benefits of Vit B12 and Vit D.  Having Vit B12 injection the day before my vx has helped.  I wish I had known about that when I was having weekly vx.  (I am repeating myself!!!).  Eliminate sugars and starchy carbohydrates from your diet.  Keep eating red meat and greens to keep your Hb built up.

      I can't say the fatigue has totally gone because I still have to have early nights.  I am not much use after 7-7.30pm, but I do achieve more.

       

  • chris52931
    chris52931

    Posted

    Thanks Sheryl for all your advice/info very informative,its much appreciated,take care.

    atb Chris

     

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