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Haemochromatosis

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terrihigashi
terrihigashi

I was diagnosed in August with HH. I am trying to figure out what symptoms are probably the high iron and what are something else. My ferritin was 1475 and is now 350. 

I have had itching, high blood pressure, anxiety, gall bladder removal, kidney stones, headaches, extremely hot for the last 2 or 3 years. 

I have noticed that I am less hot, I actually have more headaches now, legs are less itchy.

Just wanted to know....because when I mention these symptoms to the doctors, they act like it isn't related. I have read that maybe it is.

1 like, 3 replies

3 Replies

  • sheryl37154
    sheryl37154 terrihigashi

    Posted

    We usually don't have high blood pressure (don't talk when pressure being taken), itching can be liver problems, anxiety - yes, I have not come across much or any in the way of gall bladder and kidney stones (doesn't mean it does not happen).  Haemochromatosis can deposit in pituitary gland, ask for ALL pit gland hormones to be tested, then MRI.  A problem there can also cause headaches.

    Actually when I was diagnosed with a pit gland tumour I was also found to have a sky rocketing BP and severe arrythmia (I did not feel it, I have had so many left side chest problems with HH that were ignored, I had got used to it).

    The hypothalamus is often mentioned in connection with HH.  Among other things, it controls regulation of body temperature.  I often overheat more than others, and I also wake up 'iced' during the night in the tropics.  There is no research about a lot of things related to HH, so drs ignore it.  Sometimes there are case studies.  Thyroid can cause issues with temperatures too.

    I have heard of itching legs - do you have discolour there?  It would be deposits of iron in the skin.  Some have these skin iron deposits elsewhere.  Mine is upper chest, shoulders and upper back, neck.  I look like I have a beautiful tan there.

    As I say often, talk to your country's Haemochromatosis Society, join a support group and compare notes.  At least you find out you are not alone and some may have found answers.

    Keep up aggressive venesections till <50 then ultimately end up on maintenance every 3 monthly.  don't ever stop or wait till it builds up again.

    good luck and be proactive.

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    good luck and be proactive.

     >

    • terrihigashi
      terrihigashi sheryl37154

      Posted

      Thanks for your input. My blood pressure has gone down a little. The nurses say my blood isn't as thick. I'm interested in the pit. Gland and the hypothalamus.. I do need an MRI. I am afraid if what the results will be.they say my cells have a high binding factor and may not have dumped as much iron as it should have. I have arthritis.. I believe hh caused that too.
  • sheryl37154
    sheryl37154 terrihigashi

    Posted

    Google "hypothalamus iron overload".  You will have to wade through abstracts only but you will find some useful stuff.  There does not appear to be any specific research on this as they are not successful in replicating brain iron overload with mice and proving anything.

    There is a lot that is accepting of iron deposits in the hypothalamus and the pituitary gland but not the how and why and what can be done about it.  Actually, I have found that the hypothalamus is not protected by the blood brain barrier and deliberately allows iron in to 'test'.  Those of us with HH obviously test too much.  From the hypothalamus, iron is deposited into the pit gland.  I had a pit gland adenoma (they are usually benign, but they play havoc with your hormones and cause delibitating health issues) so I know from experience.  Luckily, but after 6 years of non diagnosis and sufffering, medication has corrected it.

    I guess most information regarding the brain is obtained from autopsies.  Great!

    Just keep educating yourself so that you can be pre armed on your visits to drs.

     

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