Discussions By Condition: Blood conditions

Hemochromatosis

Posted In: Blood conditions 17 Replies
  • Posted By: Anonymous
  • February 4, 2007
  • 09:54 PM

Hi, just looking for anyone else who may have hemochromatosis or know someone who has it. Thanks

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17 Replies:

  • Hi go to http://www.americanhs.org/testing.htm you will find tons of info there and also a group called high iron that chats on HH Also try Iron disorders institute Hope to see you there I will check this later
    Anonymous 42789 Replies Flag this Response
  • Hi, I have hemochromatosis. My doctor discovered it some 6 years ago during blood work that showed a high ferritin level. I was also having occasional joint pain, and that could have been a symptom. At the time I was taking large amounts of Vitamin C as a preventive measure for colds, etc. I discovered that Vitamin C can increase the body's absorption of iron so, of course, stopped that practice. The hemochromatosis is treated with periodic pbebotomies and I also try to watch my diet (no spinach, less red meat).
    Anonymous 42789 Replies Flag this Response
  • hi, i have haemochromatosis. im 25, i just watch my diet. its hereditary, my brother and my mum has it also. My uncle was diagnosed late, and he is very ill with it atm (blood clots). i am always exhausted, can sleep anywhere netime
    Anonymous 42789 Replies Flag this Response
  • Hemochromatosis and Phlebotomy – Blog is still liveHi Just to let you know that our blog is still open for a few days. The discussion has changed in the last few days so we would like to take this opportunity to invite you again to a research blog (again) on Hemochromatosis. To take part please click this linkhttp://www.thepatientconnections.com/blog.asp?uid=44The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.Best wishesBelindaThe Patient ConnectionBelinda.shale@thepatientconnections.com
    Anonymous 42789 Replies Flag this Response
  • hi i was just officially diagnoed with hemochromatosis this morning i am a 19 year old female. im also looking for people who hemochromatosis to talk with and help me get a better understanding of this blood condition. apparently one of my parents is the carrier and my whole family will be tested soon to find out if any of my siblings have this and which of my parents is carrying this. i have read today that depression can also be a sign of hemochromatosis which i suffered for from age 14-18 and i never had any reason to be depressed and reading today that it can be one of the symptoms seemed to just fit and explain why i had it. when my doctor first said i had high iron levels before they tested for hemochromatosis i couldnt understand how i could possibly have high iron levels seen as i am a vegetarian and have never taken any iron tablets to supplement it, but now im glad i didnt take any supplements because that would have made my condition worse. well at least now with this diagnosis some things are starting to make more sense to me.
    porcelain 36 Replies
    • January 21, 2009
    • 07:05 AM
    • 0
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  • Porcelain and others, If you will look at http://dailystrength.org/c/Hemochromatosis/forum there are several of us there.:)
    Anonymous 42789 Replies Flag this Response
  • Hi. I was found to have Hemochromatosis when I was 39 (male) - 5 years ago. For 10 years, ankle pain got progressively worse... to the point it was unbearable. Over the years, I had been misdiagnosed several times... from flat feet to gout. Then a standard liver test led a hematologist to check iron, saturation and ferritin levels. My ferritin was over 10,000. Most doctors I've seen said it was the highest they had ever seen. After 18 months of giving a pint of blood weekly, I am down to 3 or 4 times a year. I'd rate the ankle pain at a "4" now, vs a "10". You are so fortunate about the early diagnosis! You just need to stay diligent in your checkups, and watch what you eat. Best,John
    Anonymous 42789 Replies Flag this Response
  • Hi i am a 21 yr old female and just found out i have hemachromatosis, for 10 years i have suffered depression and fatigue, i have also had alot of stomach problems in the last few years, and lots of joint pain and even strange things like racing heart. i have never been able to find out what is going on with my body, but doctors just recently stumbled apon my high iron. which i found shocking because i am a vegetarian and have been for 3 years, and previous to that i barely ate red meat because ive always disliked it. i have never taken iron supplements either.so now that i have read all the symptoms of hemachromatosis i am so relieved to finally have some kind of explanation.i dont really understand what i am supposed to do now as my doctor was very vague- not even sure which type i have?? if anyone can help me out a bit would be great? and do you think my symptoms will get any better??
    Anonymous 42789 Replies
    • October 7, 2009
    • 11:02 PM
    • 0
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  • Hi, just looking for anyone else who may have hemochromatosis or know someone who has it. ThanksI'm an anomaly. I am a nineteen year old female and I have hereditary hemochromatosis. I found out when a blood test showed high iron two years in a row and I was feeling fatigue, dizziness and losing my hair. As a female I shouldn't even be showing signs of this until after menopause. My doctor tested for the gene and lo and behold I'm a carrier of the disease. Ironically though, I only have one of the genes (heterozygous) thus I should not be exhibiting symptoms. Like I said I'm an anomaly. I also found out that I have super low testosterone. I know this is a common symptom in men because excess iron accumulates in the testes but I'm pretty sure they're related.
    Anonymous 42789 Replies
    • January 10, 2010
    • 06:31 AM
    • 0
    Flag this Response
  • hi i was just officially diagnoed with hemochromatosis this morning i am a 19 year old female. im also looking for people who hemochromatosis to talk with and help me get a better understanding of this blood condition. apparently one of my parents is the carrier and my whole family will be tested soon to find out if any of my siblings have this and which of my parents is carrying this. i have read today that depression can also be a sign of hemochromatosis which i suffered for from age 14-18 and i never had any reason to be depressed and reading today that it can be one of the symptoms seemed to just fit and explain why i had it. when my doctor first said i had high iron levels before they tested for hemochromatosis i couldnt understand how i could possibly have high iron levels seen as i am a vegetarian and have never taken any iron tablets to supplement it, but now im glad i didnt take any supplements because that would have made my condition worse. well at least now with this diagnosis some things are starting to make more sense to me.****************************************This is so weird. I just posted a reply to the first poster. I also am a nineteen year old female. High iron, depression, hair loss, dizziness, fatigue. I was a vegetarian for five years. Never liked red meat. I did take iron supplements for awhile though.My mom got tested. She was negative. My dad is afraid of needles. So are my sisters.Weird for women to show symptoms. Especially this early. Now I found out I have low testosterone. Have you had your hormone levels tested? I'd be interested to know the results.
    Anonymous 42789 Replies
    • January 10, 2010
    • 06:39 AM
    • 0
    Flag this Response
  • Hi i am a 21 yr old female and just found out i have hemachromatosis, for 10 years i have suffered depression and fatigue, i have also had alot of stomach problems in the last few years, and lots of joint pain and even strange things like racing heart. i have never been able to find out what is going on with my body, but doctors just recently stumbled apon my high iron. which i found shocking because i am a vegetarian and have been for 3 years, and previous to that i barely ate red meat because ive always disliked it. i have never taken iron supplements either.so now that i have read all the symptoms of hemachromatosis i am so relieved to finally have some kind of explanation.i dont really understand what i am supposed to do now as my doctor was very vague- not even sure which type i have?? if anyone can help me out a bit would be great? and do you think my symptoms will get any better??***********************************************(Copy and pasted this from a reply I sent to another poster)I just posted a reply to the first poster. I also am a nineteen year old female. High iron, depression, hair loss, dizziness, fatigue. I was a vegetarian for five years. Never liked red meat. I did take iron supplements for awhile though.My mom got tested. She was negative. My dad is afraid of needles. So are my sisters.Weird for women to show symptoms. Especially this early. Now I found out I have low testosterone. Have you had your hormone levels tested? I'd be interested to know the results.*************************************************So far as I know the only way to correct the problem is to donate blood on a regular basis and monitor your iron levels regularly.Avoid vitamin C supplements. (Eating food with vitamin C should be ok)I'm not quite sure how to tell which type you have. I'm guessing it's type two since it onsets early. I don't even know which type I have. I'm guessing type two as well. Most men don't show signs of hemochromatosis until their thirties, forties. Most women don't show it until menopause. Thus twenty-one is early. I don't know for sure though. I'm obviously not a doctor but I hope this helps.-Ellie
    Anonymous 42789 Replies
    • January 10, 2010
    • 06:47 AM
    • 0
    Flag this Response
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  • Hi Ladies,Sorry to hear you have been unwell with this iron overload. But great that there is such an easy fix for it.I really want to get the word out about this hemochromatosis. Doctors seem to think that menstruating women are protected from it, and it only hits you when you stop menstruating and show high ferritin levels.I started to get sick with this years ago (I realise that now). I menstruate regularly and have never missed a monthly cycle, aside from my two pregnancies. It really started to get bad at 45 yrs old, I started to feel lethargic and would fall asleep if I sat down in the afternoonv and felt heavy and tired most of the time. My ferritin was never higher than 175, slightly high. My transferrin saturation hit 62% two years ago (51% in 2009) and the sleeping got worse and worse. So watch the Tsat figure, not always the ferritin.The criteria for diagnosis is ferritin over 200. This is too high for some of us.I always stop daytime sleeping when I menstruate, so I get a few days relief every month.After two years on the couch sleeping (20 daytime hours a week!) I heard that my male cousin had Hemochromatosis and looked into it. I approached my Doctor, who thought I was insane to think I had iron overload with my blood test results. When they took blood tests (around 100mls), the sleeping would stop for about 5 days and I'd feel like a young thing again, heaps of energy and no tiredness at all. After 5 days I would slip back into the daytime sleeping/tiredness again.I approached my doctor again and told her how I felt after the blood tests. Once again she thought I was mad. A few weeks ago I took it on myself to go and give blood (470mls) at a blood bank as a donor. I have felt fit as fiddle since then, heaps of energy and haven't slept once since. I sleep right through the night also, something I hadn't done in years. I don't know how long this will last, I can only give blood every 3 months. I'm dreading falling back into the old pattern of daytime sleeping and fatigue. I have no support from my Doctor, and I'm awaiting a visit to a haematologist. Hopefully they will see past the "Guidelines" and help me to have blood taken as needed to keep me healthy.So to all you menstruating women out there who have been fobbed off by your doctors, keep pushing. The medical community has not got on top of the diagnosis of HH in menstruating women.I only have one gene H282Y heterozygous.Cheers and I hope this helps some long suffering younger menstruating women with HH who may from been suffering from fatigue for years.***********************************************(Copy and pasted this from a reply I sent to another poster)I just posted a reply to the first poster. I also am a nineteen year old female. High iron, depression, hair loss, dizziness, fatigue. I was a vegetarian for five years. Never liked red meat. I did take iron supplements for awhile though.My mom got tested. She was negative. My dad is afraid of needles. So are my sisters.Weird for women to show symptoms. Especially this early. Now I found out I have low testosterone. Have you had your hormone levels tested? I'd be interested to know the results.*************************************************So far as I know the only way to correct the problem is to donate blood on a regular basis and monitor your iron levels regularly.Avoid vitamin C supplements. (Eating food with vitamin C should be ok)I'm not quite sure how to tell which type you have. I'm guessing it's type two since it onsets early. I don't even know which type I have. I'm guessing type two as well. Most men don't show signs of hemochromatosis until their thirties, forties. Most women don't show it until menopause. Thus twenty-one is early. I don't know for sure though. I'm obviously not a doctor but I hope this helps.-Ellie
    Anonymous 42789 Replies
    • January 19, 2010
    • 07:13 PM
    • 0
    Flag this Response
  • Hi Ladies,Sorry to hear you have been unwell with this iron overload. But great that there is such an easy fix for it.I really want to get the word out about this hemochromatosis. Doctors seem to think that menstruating women are protected from it, and it only hits you when you stop menstruating and show high ferritin levels.I started to get sick with this years ago (I realise that now). I menstruate regularly and have never missed a monthly cycle, aside from my two pregnancies. It really started to get bad at 45 yrs old, I started to feel lethargic and would fall asleep if I sat down in the afternoonv and felt heavy and tired most of the time. My ferritin was never higher than 175, slightly high. My transferrin saturation hit 62% two years ago (51% in 2009) and the sleeping got worse and worse. So watch the Tsat figure, not always the ferritin.The criteria for diagnosis is ferritin over 200. This is too high for some of us.I always stop daytime sleeping when I menstruate, so I get a few days relief every month.After two years on the couch sleeping (20 daytime hours a week!) I heard that my male cousin had Hemochromatosis and looked into it. I approached my Doctor, who thought I was insane to think I had iron overload with my blood test results. When they took blood tests (around 100mls), the sleeping would stop for about 5 days and I'd feel like a young thing again, heaps of energy and no tiredness at all. After 5 days I would slip back into the daytime sleeping/tiredness again.I approached my doctor again and told her how I felt after the blood tests. Once again she thought I was mad. A few weeks ago I took it on myself to go and give blood (470mls) at a blood bank as a donor. I have felt fit as fiddle since then, heaps of energy and haven't slept once since. I sleep right through the night also, something I hadn't done in years. I don't know how long this will last, I can only give blood every 3 months. I'm dreading falling back into the old pattern of daytime sleeping and fatigue. I have no support from my Doctor, and I'm awaiting a visit to a haematologist. Hopefully they will see past the "Guidelines" and help me to have blood taken as needed to keep me healthy.So to all you menstruating women out there who have been fobbed off by your doctors, keep pushing. The medical community has not got on top of the diagnosis of HH in menstruating women.I only have one gene H282Y heterozygous.Cheers and I hope this helps some long suffering younger menstruating women with HH who may from been suffering from fatigue for years.Hi,I would just like to thank the lady who wrote about her experience of haemachromatosis. I am a 44 year old female who was eventually diagnosed with hereditory haemachromatosis 4 1/2 years ago. It took a year to find out what was the matter with me. I had terrible headaches and was tired all the time, having to sleep in the afternoon and getting more and more down. My doctor told me that I was deppressed, and I told him that I am fed up because I am so tired all the time, if I were not self employed and working from home I would have lost my job by now.After all this with lots of blood tests over a year eventually I was told I had HH. My ferritin was only 320 but still I had been quite ill and not able to cope with every day life. Several pints of blood were taken and apart from having breast cancer at the same time I felt so much better.There was me thinking is this how it feels when you reach 40!Now 3 1/2 years later (having not had to have blood taken off) I started to get so tired again and the headaches came back, this time ferritin was only 126. All the doctors (including the haematologist Dr )said with the iron that low it cannot cause these symptoms. I have had 3 pints of blood taken in 5 weeks and I feel like a different person.Has any one else had problems like this? I am so glad that they eventually found this out as we discovered that my brother also had HH and his iron level was at 2500. Regards Chloehttp://forums.wrongdiagnosis.com/images/icons/icon7.gif
    chloe2 1 Replies Flag this Response
  • ****************************************This is so weird. I just posted a reply to the first poster. I also am a nineteen year old female. High iron, depression, hair loss, dizziness, fatigue. I was a vegetarian for five years. Never liked red meat. I did take iron supplements for awhile though.My mom got tested. She was negative. My dad is afraid of needles. So are my sisters.Weird for women to show symptoms. Especially this early. Now I found out I have low testosterone. Have you had your hormone levels tested? I'd be interested to know the results.Your dad can be tested via a mouth swab, just type something like"hemochomotosis testing mouth swab" into google and you'll see several companies.
    Anonymous 42789 Replies
    • August 23, 2010
    • 01:28 PM
    • 0
    Flag this Response
  • I'm an anomaly. I am a nineteen year old female and I have hereditary hemochromatosis. I found out when a blood test showed high iron two years in a row and I was feeling fatigue, dizziness and losing my hair. As a female I shouldn't even be showing signs of this until after menopause. My doctor tested for the gene and lo and behold I'm a carrier of the disease. Ironically though, I only have one of the genes (heterozygous) thus I should not be exhibiting symptoms. Like I said I'm an anomaly. I also found out that I have super low testosterone. I know this is a common symptom in men because excess iron accumulates in the testes but I'm pretty sure they're related.I also have hereditary hemochromatosis and was the first in my family to know. It took almost 2 years to find it and after testing my sibling, we have 4 out of 7 with it. My sister just above me by 2 years, is on the liver transplant list and has now been told she has cancer on both sides of her liver. We are just waiting for the call... If anyone wants to talk to someone that has been living with it for 5 years now, please e-mail me. dzambory@ec.rr.com I will be glad to talk to you about all the things it affected in me and which genes I have. BTW, you get one gene from each parent if you have it or you could have a gene not yet known. This is an illness that has only been studied well in the last 50 years and they are still learning about it. I too, have low testosterone and am a female. Had it all my life! I could not go into laber due to it being so low but no one knew why. Now we do!! Love to hear from anyone..
    Anonymous 42789 Replies
    • September 12, 2010
    • 00:58 AM
    • 0
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  • Hello, I am a 27 y.o. male with Hemachromatosis. I am experiancing all of the usual symptoms associated with this dissease, however, I am having symptoms with all of my tendons in my hands, in the wrists and in the fingers. If I wag my fingers side to side I can feel and hear my tendons snaping over the bones. I get this in the back of my neck, in my shoulders, hips, and ankles, and just anywhere that there is a joint. Has anyone else been having these symptoms? I am very frustrated.
    Anonymous 42789 Replies Flag this Response
  • Hello, I am a 27 y.o. male with Hemachromatosis. I am experiancing all of the usual symptoms associated with this dissease, however, I am having symptoms with all of my tendons in my hands, in the wrists and in the fingers. If I wag my fingers side to side I can feel and hear my tendons snaping over the bones. I get this in the back of my neck, in my shoulders, hips, and ankles, and just anywhere that there is a joint. Has anyone else been having these symptoms? I am very frustrated.My husband is having same issues. His testosterone is really low for a 37 year old man and he has the same ailments you mentioned. All his other blood work came back normal except ferritin high and testosterone 153. Have you had any resolution in your case?
    Anonymous 42789 Replies Flag this Response
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