Hemochromatosis Support Group

Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.

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  • Djford14

    Hemochromatosis! Really!!!

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    I am so sick of hearing "oh that's a common issue!" Yep it may be "common" but the never ending fatigue, joint pain, foggy brain, weakness still sucks even though it's "common" I'm 38 with 2 boys, I want nothing else but to sleep and rest but get constant crap from people. I'm 4 weekly phlebotomy treatments in and over it already. I feel like crap for 4-5 days after the 500cc draining; then get 2...
  • Jbean

    Hemocromatosis

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    Hi just been diagnoised with hemocromatosis.   My liver and everything is fine but I am having a lot of pains in my heart can someone shed some light on this.  Also once treatment start will the pain go.   Also is their any special diet I should be eating Jill
  • Brinski

    Hemochromotosis alternative therapy

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    HI everyone.   I saw my Doctor last monday.   He has told me to start taking Pariet Tablets. 1 per day.  This has been reported to reduce Iron in the body. This drug is more commonly used for Reflux or heartburn etc.    My iron levels are now in normal range.  I had a venesection last week so am not due for another for 4 months. Have stretched this out for an extra month this time.  See...
  • Skinius_Maximus

    New to......

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    Hi everyoneNew to this site, group and hemochromotosis.I am currently in the tail end of my de-ironing, I was just diagnosed last November.  I go in for weekly phlebs when my counts allow it, I can usually do 2 phlebs in a row before I have to take a week off. When I was diagnosed my Ferratin was in the 1600's, my ferratin is currently at 379.Some of the side affects of my weekly phlebs are...
  • steelsully

    restless legs

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    Does anyone have restless legs?When i sit down or lay down most of the time at night.I have a suggestion for some of you guys im 54 and things didnt work like they used to i know im not 18 any more but i got the doctor to test my testosderone it was a little low but i had all the symtoms of low t.I tried testoderone gel did not like it so for the last year ive been having testoprel pellets...
  • Godgirl

    Good Morning

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    I just got diagnosed in July at age 50 and joined this group this morning. I'm looking forward to having you all as support and giving it back. I did a lot of damage to my body eating sugar and chewing nicotein gum before I finally found out what was wrong. I was having to go to ER every other month and had no idea what the problem was. I'm grateful to now have a diagnosis but also feeling...
  • starartist17

    Just diagnosed with HH type 1

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    I was diagnosed with hereditary hemochromatosis, homozygous for C282Y, about a month ago. I've started the weekly phlebotomies as my ferritin was over 1600 and my TS% was at 100%. I've been having chronic fatigue, muscle and joint pain, and memory problems for a while. My ALT number was up but the other liver enzymes were normal. I'm only 36 and a female, and I was just wondering if anyone else...
  • lbj8858

    impotence

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    Several months ago, someone gave me information regarding Androgel and it converting to be estrogen dominant. They said there was something that could be added to it to make it work as the testosterone it iis intended to be. I can't find that discussion anywhere and I can't remember what it was. We were talking about "man boobs", belly fat and other side effects of androgel. If this is something...
  • whyohwhyme

    UTI's

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    Does anyone know if there is a link between hemochromatosis and UTI infections.I was diagnosed with HH 1-1/2 years ago. My recent ferritin level was in the 400's; however, my doctor says they do not start treating until it is in the 500's.I have been suffering from chronic UTI's for the last 3 years and I'm scared and frustrated. I think I am starting to get my 4th one in as many months.Any...
  • Jorge

    45 years old and just knew I may have HEMOC

    Hello! I have YEARS dealing with so many issues in my body and thanks to my wife I finally know I may have Genetic Hemoc. I am 45 years and unfottunately showing many of the symptoms already:Daily joint pain (more intense in hands and knees), daily muscle pain (suffering often musscle tear), extreme fatigue, heart pain, bronze skin, hair lose, mind fog, low sex drive.Of course I did not know i...
  • WrCainy

    Blood work results after my first phlebotomy

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    Hi peeps. Looking for some insight and info on others experiences. After a starting point of 1880 as a ferris level I had my first blood draw this week. They took 500cc. I'm scheduled for weekly. The draw went fine. I had the follow up blood work done at the lab to assess the effect of the draw.My question is this:I have experienced a drop of 300 ng on my ferritin level after only one draw. Is...
  • onefinemother

    Son just diagnosed with Hemochromatosis

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    Hello! My 35 yr old son was just diagnosed this month and has had two phlybotomies.  His Ferriton raised 50 points after his first draw.  Is this normal?  His doctor didn't seem concerned but I'm not sure his doctor is concerned about much.  He also saw a Gastro P.A. who told him that there are no diet restrictions and that either me or his father has the disease even though the way we...
  • Lost_Ami_In_DE

    Just Diagnosed with Hemochromatosis, I'm scared

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    Hi everyone, I've read a lot of post and found them really encouraging. I just thought I'd take the chance to share my situation and get some feedback from those with experience. I’m sorry if it’s quite long, I’m venting to a certain degree. I'm 23 years old and was diagnosed with hemochromatosis a week and a half ago when I went in for a problem with my psoriasis and my doctor ran a...
  • Petango

    new hh patient alcohol effects

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    hello i am a 33 yr old male just diagnosed waiting to meet with my blood doctor and had a few questions i hope maybe can be answered here.... ive been recently noticing huuge changes in how i get drunk, been fairly regular beer drinker for a few years (12-15 per week avg) and over the last 6 months or so i have been getting faaar more drunk after 5-6 beers even though this amount would previously...
  • Flando1

    Newbie to Website. Symptoms Question.

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    So I'm 44 and was just diagnosed a few months ago.  My ferretin was pretty darn high, can't remember exact number.  However, my joints feel like I'm a 75 year old man.  I mean, they really friggin' hurt.  Mainly my knees, ankles, and feet.  Sometimes to the point where I have to use steroids just to get going.  Is this common?  It makes sense but trying to figure out if it could be...