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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  • 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...
  • 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...
  • Zappy1

    Totally out of whack

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    Hope everyone is doing well! It's been quite some time since I last posted.  I was diagnosed in 2014 with HH (C282Y Homozygous) At that time, my ferritin level was at 524 with 57% saturation.  I was 45 when diagnosed. At that time, I had went 18 years without any menstrual cycles.  I think that's when my ferritin started increasing.  I got my menstrual cycles back after having several...
  • chrys_miss_

    Story?

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    Hello guys! My name is Chrys, and I am a high school student. My class was recently assigned to conduct a case study of sorts on genetic disorders. My partner and I chose Hemochromatosis.We are supposed to include the story of someone with Hemochromatosis in our study. I was wondering if I could get a story from someone in this support group. It's okay if you don't want me to include your name...
  • 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...
  • mkarns24

    Confused

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    I was diagnosed in 2011 with a gene test of C282Y and H63D. 3 docs have confirmed over the years I am an HH pt. Ferritin level at diagnosis was over 2100. Phleb'd for 10 straight weeks. My new liver doc is now telling me I'm just a carrier. I have all the symptoms. I'm 38. I don't get it. This doc comes from the Mayo Clinic. My ferritin is almost 500, ast and alt are elevated yet he won't order a...
  • Ironmen

    Iron overload with elivated ferritin only

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    Hi, I'm 53 and was diagnosed with IBS 10 years ago. Recent MRI showed iron overload.  My blood tets are normal exsept elivated  ferritin 437ng/ml, elivated billirubin 1.4mg/dL ( I was diagnosed with gilbert syndrome 25 years ago and this billirubin level is typical ) and border line MCHC =31.9. My symptoms are upper abdominal pain, dhiarrea, headches, dizziness, fatigue, insomnia, back and knee...
  • Kimimoto

    Niacin for pain

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    Hey! Has anyone out there tried niacin for the muscle and joint pain associated with HH? As someone who works in the holistic wellness field, it's not ok for me to settle and be ok with the amount of pain I experience every day, so I have been on a quest to find some relief. The sad thing is there just isn't much out there in regards to research for the pain that we have. From what one of the...
  • MCC

    Confused about lab results

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    Hi all, My TIBC, UIBC, and iron serum levels have been high-and steadily rising-for the past 8 years. Everytime I have asked my doctor about this she has said it's nothing to worry about. The lastest bloodwork I had done in March showed: TIBC level at 617 ug/dL, UIBC level at 439 ug/dL, and Iron Serum at 178 ug/dL.  Obviously, this concerned me since it is the highest it has been. My other...
  • 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...
  • Mariamaurea

    Carrier of HH with symptoms

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    Hi,I am 36 and just found out that I am a carrier of HH. I have joint (hip and knee) pain, lethargy, abdominal pain, hair loss, no appetite, depression, irritability, no sex drive, etc. I am being referred to a GI. I am concerned that not enough Dr's know that carriers can experience symptoms and will overlook me. My general practitioner doesn't know enough about HH to understand that. I would...
  • 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...
  • Brinski

    My Journey with Hemochromotosis.

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    Diagnosed 2015 with level 2003.  Chronic fatigue and joint pain, all hidden by HRT.  I got a rash which was a blood disorder. 2 Speacilists both say not related to Hemo.  This is when I was diagnosed.  Venisections every fortnight for 18 months.  I thought that once I got to normal levels, my pain would stop.   Nooo you thought wrong.  I now am asking the question is Psoriatic Arthritis...
  • Kimimoto

    new to group, looking for some answers

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    Hi! I'm a 34 year old female who was diagnosed a year ago and I’m still trying to figure all of this out. I've been experiencing full body muscle, joint, occasional nerve pain and extreme fatigue for years. I finally found a naturopath who though to check my iron. It's an amazing feeling to be validated and to have an explanation for all this pain. I’m not crazy!! I started getting phlebotomy...
  • QuiltingBee

    Looking for Research Website

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    I was diagnosed with HH in 2009.  I had elevated levels for awhile, but only after having a hysterectomy did my GYN suggest my primary care dr. get some tests run. I started seeing an amazing hematology/oncologist and she was very thorough in her testing. The genetic testing showed both my parents carried the gene, and so far I am the only child of theirs that has it. I have never had to donate...