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Little confused

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daniel84389
daniel84389

Hi all  I'm a little  confused.  I just received  my Gene test for hemochromatosis.

Its says its compound heterozygote c282y/ h63d mutation positive.

I have a cousin on my grandad side with diagnosis hemochromatosis.

My  ferritin  level was 360ng but has gone down since I  stopped  eating  foods with iron and my multivitamin to 270ng .

What I dont understand  do I have hemochromatosis  going on above information  even  if my ferritin  is low according to my GP.

Anyone how is going through is can you give me some idea  what the gene test means.

I'm going back to the specialist 4 weeks time but I just wanted to understand first.

Thanks Daniel 

0 likes, 6 replies

6 Replies

  • eric06641
    eric06641 daniel84389

    Posted

    You have the genes for it which doesn't always mean you have it.

    Given your iron levels though its likely you do as its high.

    it's not too high so its likely mild and easily treatable.

    Only your hemotolgist can say for certain though.

    dont stress out about its and ask your doctor or hematologist what's the diagnosis is and treatment.

  • sheryl37154
    sheryl37154 daniel84389

    Posted

    You do have genetic haemochromatosis but you are not iron loading very fast. You don't have to stop eating foods with natural iron as you need to keep your Hb at a healthy level, but definitely stop taking supplements with iron and packaged foods fortified with iron. This will also allow your specialist know where you are actually at with your haemochromatosis. Vx is the most effective and safest way to reduce ferritin.

    I am homozygous C282Y, my husband is homozygous H63D, and of course, our son is C282Y/H63D like yourself. Mine is very aggressive (although some with these genes do not always load iron), my husband least of all (after some vx he stopped loading iron) and our son is in between.

    It won't hurt you to have a vx now and then, or donate at a blood bank but they will not accept you if they know you have haemochromatosis.

    You don't say how old you are which can have a great bearing on how high your ferritin is.

    Let us know how you go.

    • jax15282
      jax15282 sheryl37154

      Posted

      Not certain where either of you are resident...but to indicate that "blood banks will not accept donations if they know you have hemochromotosis" is certainly not the case in Canada where I live, or in Florida where I spend the winter. If you meet the regular criteria for donating both are happy to use your blood. Canadian Blood Services will not provide therapeutic phlebotomy for anyone for any reason. But many blood services in Florida will if you have a Drs prescription for phlebotomy and meet the regular criteria for donating.

    • sheryl37154
      sheryl37154 jax15282

      Posted

      Same in Australia - must have an online request from dr. However, I got the impression Daniel's dr may not order vx because he did not consider ferritin high enough.

  • daniel84389
    daniel84389

    Posted

    Thank you for your comments.

    I only wan t to my doctor 6 month ago complaining of fatigue and soft tissue pain body knees , elbows and in the groin.

    plus I seem to pick up common colds that Affect me badly.

    i have said to my doctor and family for many years I believe I have something wrong with my immune system . can hemochromatosis affect the immune system.

    I'm a 39 year old male ,

    TS 51%

    serum iron 32 umol/l

    ferritin 351 ng/m

    my gp has told me the iron levels are not at a range to course problems .

    • sheryl37154
      sheryl37154 daniel84389

      Posted

      You are just over the border, TS>50, ferritin >300. Drs who stand on ceremony annoy the hell out of me. It is not their body which is dealing with it. It could be responsible and might also not be responsible for your issues. Either way, your dr should be addressing your problems and treating them. Yes, haemochromatosis does affect our immune system.

      Also a cold/infection/inflammation will increase your ferritin level on its own. This ferritin will reduce when infection goes away. Try sucking on a 500gm Vit C tablet last thing at night. Regardless of Vit C increasing our uptake of iron, antioxidents such as Vit C are very important to us to improve our immune system. Not good to take with meals, though.

      Knowing what I know, I would seek out a way to donate blood, if I were you.

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