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does anyone have skin hyperpigmentation, or hemochromatosis?

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by fresh_eyes, Jan 2, 2010.

  1. fresh_eyes

    fresh_eyes happy to be here

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    In this blog post, the poster describes his wife as having both CFS and hemochromatosis:

    http://cobbsblog.com/blog/?p=770

    I had never heard of hemochromatosis, in which the body stores excess iron, but was startled to learn that it presents with one of my weirder symptoms, a bronze-colored hyperpigmentation of the skin (mine is on the sides of my forehead and cheekbones). This pigmentation appeared shortly *before* my sudden-onset CFS. (And has always been brushed off by doctors, including this classic line: "It doesn't look bad!" As if I'm solely concerned for vanity's sake.)

    Does anyone else have anything like this?

    Hemochromatosis is generally a genetic disorder. But then, the same is true for Neimann Pick C, the condition of the "childhood alzheimer's" twins who are XMRV+. I'm starting to wonder if XMRV is triggering epigenetic changes causing these conditions, previously latent, to start manifesting - ???
  2. Koan

    Koan Be the change.

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    Hemochomatosis is most common in Irish and other northern people. Does that fit? Do you have the rings around your irises? I think, but I'm not sure, that it is not too terribly difficult to identify once people start looking for it.

    There was a ProHealth member who had it - MrDad. I don't believe all his symptoms resolved with treatment though. If you are a member there you might see if he's still around.

    It certainly is something for you to look at. It's treatable and we all get very excited when we consider having something treatable so I am hoping for you!
  3. fresh_eyes

    fresh_eyes happy to be here

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    Aye, the Irish/northern thing fits. Didn't see anything in my research about iris rings, but my eyes are green w/orangey rings around the iris - is that part of it???
  4. Koan

    Koan Be the change.

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  5. Koan

    Koan Be the change.

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    OMG, Fresh, yes!
  6. fresh_eyes

    fresh_eyes happy to be here

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    O...M...G....
    That woman's skin is exactly what mine looks like....
    Excuse me while I go take some deep breaths....
  7. Koan

    Koan Be the change.

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    OMG!

    Ok, being the supremely selfish individual that I am, I'm thinking: We'll lose Fresh-eyes advocacy! So sorry!

    This could be big for you!

    I'm very excited!
  8. Martlet

    Martlet Senior Member

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    But on the up side, the only member of my family to have skin that looked like that was my great-grandmother and she was well into her nineties when she died. So, Fresh-eyes, don't worry about it - please - until you've had your iron checked.
  9. Koan

    Koan Be the change.

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    Hey Martlet,

    I wouldn't see a diagnosis of hemochromatosis as a bad thing, personally. I would see it as a treatable illness and a bit of a miracle!
  10. fresh_eyes

    fresh_eyes happy to be here

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    That's good to know, Martlet - but my need for deep breaths was not due to fear, but amazement and excitement! Yes, 6 years of being sick as a dog does strange things to a person, when you're excited about maybe having a potentially-fatal disease - but I *know* I don't have to tell any of y'all that.

    ps Koan, even if I have this thing, it doesn't change the fact that for 6 years I've been handed antidepressants for a potentially fatal illness of unclear etiology - so I remain fired up on the advocacy front. :)
  11. froufox

    froufox Senior Member

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    Hi fresh_eyes and all,

    I had exactly the same problem for several yrs the skin on my face and my hands would turn bright orange!! With me it was more the bottom half of my face, lower cheeks, especially around my mouth area above my lips and also my chin and jawline, not so much my forehead although sometimes my whole face would turn orange too. People always thought that I'd been on holiday and had just acquired a tan it was that bad. Like you I also thought that I had haemochromatosis when I did some research and discovered that it was one of the conditions that made your skin turn orange. Anyway I had some tests done and it turned out it wasnt that as my ferritin is really low and has been really low for years and my iron is on the low side too.

    However a few years ago I found out through Andy Cutler (the chelation guy) that another reason it can occur is due to poor metabolism of beta-carotene, due to lack of thyroid hormone and other important nutrients like zinc - due to mercury poisoning. This causes the conversion from beta-carotene to Vitamin A to not take place properly hence the build up of BC in the skin. I've not heard many others mention it apart from say one or two though so I dont know how common it is for people with mercury problems to have this problem. With me it definitely used to occur when I drank too much carrot juice or other foods high in BC but also at other times too eg when my digestive tract was overloaded with foods that were difficult to digest.

    Though the past few years the problem seems to have stopped for some reason, and I very rarely get the orange tan anymore, I dont know why as before I had it constantly and I cant pinpoint what I've done to correct this problem. Also I am obviously still sick, have thyroid problems and still got a metal problem though I have been chelating on and off for the past 4 and half yrs so maybe this has helped, I dont know, but in some ways I am worse off now than I was then.

    Anyway I just wanted to share my experience in case its relevant. Funnily enough I am also of Irish descent and have green/blue eyes and have the orange rings around my pupils! They were yellow for yrs as I was growing up but turned orange during one stage, since having ME, when I was particularly unwell and toxic and had lots of digestive problems. I had a few iridology examinations in the past and was told by one iridologist that the ring represents your digestive tract and the darker the colour gets the deeper the toxicity so it definitely fitted my experience at the time. I've still got the orange rings now but at least I dont look like a bottle of orangeade anymore!! LOL :) - actually that emoticon sums it up really doesnt it? lol

    Anyway good luck with figuring out this problem whatever it turns out to be.
  12. fresh_eyes

    fresh_eyes happy to be here

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    Hi Frou, thanks for your input. I wouldn't really describe my skin thing as orange (fortunately!), it looks pretty normal/tan/like my face is one giant freckle, and if you didn't know that I used to have very fair skin you might not think anything of it. I'm going to get those "iron panel" blood tests soon, I'll keep you guys posted.
  13. South

    South Senior Member

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    If you suspect hemochromatosis (having too much iron in the body), there's some kind of ferritin test - it could be worth a quick online search for ferritin test. Not sure on that.

    A cheap supplement that actually has proof behind it to reduce iron level in the body is IP6 (also worth doing an online search for studies, I found them interesting). I think the idea is to take IP6 on an empty stomach, to reduce iron in the liver or other parts of the body. IP6 is related to phytic acid, but unlike food bran that has phytic acid, the IP6 has most of the minerals removed, to allow it to better chelate iron if taken on an empty stomach. The manufacturers leave some calcium and magnesium in the IP6 blend, but most of the IP6 in the supplements is not bound to any mineral (unlike the phytic acid in the bran of grains, which apparently isn't as helpful in chelating out existing iron stores in the body)
  14. Leopardtail

    Leopardtail Senior Member

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    My eyes look just like that.. Blue with an orangey ring around the Iris.

    There is a one possible link between ME and Hemochromatosis. Poor methylation has been implicated in both that can be solved using RVKs protocol. Essentially Methyl-B9 + Methyl-B12 + Riboflavin-5-Phosphate + Pyridoxal-5-Phosphate you can get them all at iherb link here.

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