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Just diagnosed Hemochromotosis

Posted , 6 users are following.

connor31555
connor31555

Hey everyone, I'm  26 years old and was just diagnosed with Hemochromatosis...

I'm just looking to see if anyone has any information regarding this blood disorder.. its apparently pretty rare as per my doctor especially at my age. I go for therapeutic phlebotomy every week currently  and am just looking for ways to make my life easier and prevent future complications down the line. hope to hear from someone soon 

Regards, 

Connor 

0 likes, 6 replies

6 Replies

  • ellen23311
    ellen23311 connor31555

    Posted

    Welcome to the club, I’m 20 and was diagnosed at 18, it is a bit weird at first to come to terms with when every doctor only knows how to treat people a lot older but there isn’t much you can do other than go to the venesections. If going weekly is hard or you feel it stops you from actually living your life I'd suggest changing to bi-weekly, i did this so I had one week to prep and get over the venesection and one week to be a teenager and have fun. You just have to remember that you’re lucky to be diagnosed at a young age when so many people live their whole lives without knowing. 

    Hope it doesn’t take you too long to get to maintenance, Ellen x

  • deb94549
    deb94549 connor31555

    Posted

    Hi connor, what are your ferritin levels? Diet is going to be key...limit red meats, check your cereals as they are very high in iron, leafy greens, kidney beans...start eating more calcium, nuts, whole grains. I also added supplements of tumeric, green tea, milk thistle, calcium, probiotic and a multivitamin with no iron. Good luck to you!
  • selina58849
    selina58849 connor31555

    Posted

    Hi conner, also drinking tea with your meals and adding some turmeric powder to your meals can help limit absorption of iron. Don't have iron or vitamin c supplements. See if your local library has the hemochromatosis cookbook. It tells you the amounts of iron in each food which helps to know.

    • deb94549
      deb94549 selina58849

      Posted

      Green tea, calcium, turmeric, and milk thistle are great for blocking iron absorption. I have added all those plus a non iron multi vitamin every night, I treat them s if they were my RX. You can get these reasonably priced at like, piping rock, puritans pride or swanson.

    • sheryl37154
      sheryl37154 selina58849

      Posted

      This cookbook which is full of information regarding haemochromatosis and diet, also explains why it is ok to eat just about anything, with the exception of fortified foods and iron supplements, and avoiding Vit C with meals.  Sugar and starchy carbohydrates are also our enemy.

      It disperses the myth of not eating red meat and greens.  Greens are a necessary part of our diet, and red meat is ok.  It is not necessary to eliminate it from your diet, just don't have it every day.

       

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