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Suspected Hemochromatosis

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Equin0x
Equin0x

Right about 2 years ago my health changed and started on a downward spiral, I am a 29yr old male nearly 30 and around this time in 2012 I began having hair thinning all over the body including head and gradually getting worse, my skin has a unhealthy dark tone to it and I'm always tired and then a a few months later the biggest shocker came and I started having erectile dysfunction, I was hoping all these issues would correct itself but obviously I'm here now and nothing is getting better and depression has set in, in all those time I done a few blood tests and the most recent 1 I noticed my iron level is in the red at 35 unml/L and the normal range says 6-25, also the Ferritin test done in a different blood test shows 285 and alot of information on this internet says normal for a adult male should be below 150? Doctors haven't noticed any of this, I wondered if anyone can shed any light if these numbers are of great concern?

1 like, 21 replies

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  • aidan
    aidan Equin0x

    Posted

    I have had Haemochromatosis diagnosed for about 3 years. My initial levels were about 500. I had a number of venesections and my ferritin levels were reduced to around 50. I was told that 50 is the target. After a number of years, my levels went up again but it seems they are now near 50 again. I seem to have all the symptoms that you talk of including the fatigue. People have suggested to me that I might have a deficiency in Vitamin B12, accounting for the fatigue. I am considering trying a vitamin B12 supplement and if that doesnt work, I will go back to my GP. Unfortunately, I have the other symptoms as well.
    • Equin0x
      Equin0x aidan

      Posted

      So Aidan how old are you? also when your ferritin level went back to 50 your symptoms didn't improve? does anyone know can symptoms improve after draining blood and iron level returns to normal?
    • aidan
      aidan Equin0x

      Posted

      I am 43. My Ferritin is now down to 58 but the symptoms of fatigue are still there. There may be a lag between ferritin bottoming out and symptoms improving.
    • sheryl37154
      sheryl37154 Equin0x

      Posted

      Yes, I know a few people whose symptoms have improved once they are de-ironed, i.e. brought down to <30 or="" at="" least=""><50.  then they are allowed to increase their level but usually not more than about 150 for men.  keep telling your venesection manager when you feel better or worse so that you can find your optimal level.  then="" they="" are="" allowed="" to="" increase="" their="" level="" but="" usually="" not="" more="" than="" about="" 150="" for="" men.=""  keep="" telling="" your="" venesection="" manager="" when="" you="" feel="" better="" or="" worse="" so="" that="" you="" can="" find="" your="" optimal="">
    • aidan
      aidan sheryl37154

      Posted

      The regime they use for me in Donegal, Ireland is fortnightly venesections until the ferritin is down to 50 or thereabouts, followed by blood tests every three months. After my initial de-ironing, I got the three monthly tests, which came back with good results. So I stopped for a year and a bit and then when I got a blood test this year, my levels had gone up to around 500.
    • sheryl37154
      sheryl37154 aidan

      Posted

      My understanding is to never stop - keep up those 3 monthly venesections.  Even people without HH can usually donate blood every 3 months without any problems.  You may have to de-iron again, and start over.  I have been on 3 monthly for years now.
    • aidan
      aidan sheryl37154

      Posted

      I expect that my Ferritin levels will not rise significantly for about a year or two. I will do the quarterly blood tests just in case the levels rise unexpectedly.

       

    • sheryl37154
      sheryl37154 aidan

      Posted

      Unless I am misreading this - If your level is now 500 you are in overload again.  Management levels during the maintenance program indicate that levels should be kept 50-150.  Check out the Iron Disorders Institute clinical management form for more information.
    • aidan
      aidan sheryl37154

      Posted

      Sheryl, my level was approx 500 a number of months ago. After fortnightly venesections, it is now 59, which is an acceptable level. I expect my level to rise and will have blood tests every 3 months. And if the levels are significantly over 50, I will be back in the venesections.
    • sheryl37154
      sheryl37154 aidan

      Posted

      Do you feel better when your level is 59?  If so, it may be your optimal level.  each venesection knocks off about 25mcg of iron (equivalent to the iron in a 2.5 inch nail), so if your level in 3 months is, say, 80, an immediate venesection will bring it down to about 55.  This knowledge will help you self-evaluate.

       

    • megan36105
      megan36105 aidan

      Posted

      Maybe you're a bit like me. I was even more fatigued over the past two years than I was when my ferritin levels were over 600. But then back in March I asked for a printout of all the the blood tests they'd done when I went in for my phlebotomies and I found out that I'd bee hovering in between about 30-40, meaning that I was under the "optimal" level of 50. So I've allowed it to climb and from November to March (November was my last phlebotomy) it had hardly climbed (in March my level was only at 40). So then I had another blood test in June and my level had only climbed to 48.

      Most recently, so long as I get a good nights sleep, the next day I feel less fatigued than I have in years. So clearly, my personal optimal level is potentially over 50.

    • sheryl37154
      sheryl37154 aidan

      Posted

      Me too - 13-14 years after de-ironing.  I also have body pain, and maybe trying to deal with the body pain is causing the fatigue.  As I have heard from a dr that iron deposits in the lymph glands, and research indicates that iron deposits in muscles (and in the bone marrow), I am going to experiment with massage to disperse the iron.

      However, lymph gland massage drains the lymph glands into the stomach and supposedly we excrete it - but maybe our body will absorb it again! cry

      Lately, since I have hit on this idea, I have applied a Pro-Shiatsu massager to a spot between my shoulder blades which gets considerably painful.  The pain disappears for a couple of days and so does the fatigue, then it descends on me again.  If it only lasts a couple of days, I suppose having the electric massager is cheaper than paying a masseuse.

      Perhaps a professional massage may last a lot longer as hopefully the iron would be dispersed further.  Where to?  Maybe to the lymph glands, and so the cycle continues.  All speculation for now, until I have time to try it all out for real.

      I think the muscle massage has to be really hard - like the massager I have does, to disperse the iron.  Lymph gland drainage is reasonably gentle in comparison.

  • megan36105
    megan36105 Equin0x

    Posted

    Where do you both live?

    Because where I am (Alberta, Canada) the doctors have advised me that a normal ferritin level is anywhere between 12 - 200, not below 150 (not that it matters, I'm just wondering why the range is so different). My level (when I last checked in June) was 48. However, I'm letting mine climb as I'm pretty sure that I haven't yet found the optimal iron level for my body (and I also climb very slowly).

    I was told by my hematologist that any sort of sexual dysfunction from haemochromatosis won't happen unless your ferritin levels were 2000+ for a number of years. The reason I asked about this was because over... I don't know, maybe three years or so, I've seen a decrease in my libido. It was enough of a decrease that it was affecting mine and my bf's relationship because, while I still enjoyed sex, I just couldn't care less if we had it or not. I just couldn't get turned on unless we were already engaging in intercourse. (I'm 25, btw, so that we can compare ages and symptoms). I felt like it was worse than it was when my ferritin level was 600+ (which is the level that I was diagnosed at, at age 21).

    So then once my specialist told me that my libido issue wasn't related to my iron overload, I sought out help from a psychologist. I had two sessions with her (the last one was this previous Tuesday) and my libido problems are getting better. It's so hard when there are a number of options in terms of what could be causing your sexual dysfunction but just going off of what my specialist says, at this point, without being a doctor and without more tests, I might have to conclude that your issues (the sexual ones, not the others) could be more psychological than anything.

    But at the same time, I would encourage you, and Aidan for that matter, to make your doctor be more thorough in your examinations. Make sure your iron, ferritin, b12, and thyroid are all tested. Make them. Don't let them brush you off because this is something that you're concerned about.

    And don't be ashamed to mention your erectile dysfunction issues. People don't realize sometimes that having a good sex life makes everything else better. If you're in a relationship and you're having issues with libido, getting and staying hard, whatever, it bleeds into the rest of your relationship. So this is something that's important for you.

    And Equin0x, the colour of your skin is definitely a sign of having iron overload, but I would also recommend getting possible tests on your liver done, and not just for iron overload, but for other causes as well.

     

  • dambudzo
    dambudzo Equin0x

    Posted

    just wondering...... would it be possible to have the relevant blood tests to check that your main hormones are at the right level? do you get headaches?

    i don't want to worry you - just something to check with your doctor that your pituitary gland is functioning ok. 

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