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.
Hi All
I have just been diagnoised with Hemochromatosis.
I am 26 years old (female). My level was 368.
I had my first blood letting a month after diagnoises and my level was 327 at time of draining.
Even though my levels arn't really that high, I am having very extreme symptoms.
I am ALWAYS tired. Very often I will sleep 10 - 14 hours but have been known to sleep 20hours straight.
I also drink 4-6 liters of water a day (and pee every bit of it out too LOL). Generally after 12 midday my pee is clear as water and you wouldn't even know I'd peed in the toilet bowl.
I am very frustrated! My GP has no real idea what to do with me and can't really give me a firm answer as to if I should go for another blood letting. Aparently something is pretty low (12.4) and should be above 13 before any more blood is lost.
I don't see the specialist until the 24th of this month.
The fatigue is really affecting my work and home life. My boss has suggested I go part time and my other half is having trouble accepting I am ill and not just being lazy.
He finds it hard to look at me and believe I am too exhausted to walk the dogs or clean. He sees me with enough energy to watch tv or play games on my lap top so I should be able to do other stuff. He doesn't understand I am conserving my energy to ensure I can go to work the next day.
When my brother was found to have it also (before me) his level was over 1600. He was tired but did not suffer the fatigue that I do or the excessive thirst.
I just feel really alone with all this. I don't know what to do with my work situation or my OH...
He really is a supportive guy, just I have been 'lazy' for so long (over a year) that it's hard for him to belive I'm not using this as a get out of jail free card....
HELP!!
I have just been diagnoised with Hemochromatosis.
I am 26 years old (female). My level was 368.
I had my first blood letting a month after diagnoises and my level was 327 at time of draining.
Even though my levels arn't really that high, I am having very extreme symptoms.
I am ALWAYS tired. Very often I will sleep 10 - 14 hours but have been known to sleep 20hours straight.
I also drink 4-6 liters of water a day (and pee every bit of it out too LOL). Generally after 12 midday my pee is clear as water and you wouldn't even know I'd peed in the toilet bowl.
I am very frustrated! My GP has no real idea what to do with me and can't really give me a firm answer as to if I should go for another blood letting. Aparently something is pretty low (12.4) and should be above 13 before any more blood is lost.
I don't see the specialist until the 24th of this month.
The fatigue is really affecting my work and home life. My boss has suggested I go part time and my other half is having trouble accepting I am ill and not just being lazy.
He finds it hard to look at me and believe I am too exhausted to walk the dogs or clean. He sees me with enough energy to watch tv or play games on my lap top so I should be able to do other stuff. He doesn't understand I am conserving my energy to ensure I can go to work the next day.
When my brother was found to have it also (before me) his level was over 1600. He was tired but did not suffer the fatigue that I do or the excessive thirst.
I just feel really alone with all this. I don't know what to do with my work situation or my OH...
He really is a supportive guy, just I have been 'lazy' for so long (over a year) that it's hard for him to belive I'm not using this as a get out of jail free card....
HELP!!
deleted_user
Mslmplatiem ,I know your pain of suffering from the non-believers/supporters ,hang in there ,that reason of hopelessness is what led me to this group to deal with the hh and it was the very best first step I made into my recovery ,this group is so supportive and better educated than most doctors when it comes to treating hh . After I was de-ironed I was still very fatigued and upon further blood testing they found out I was real low on vit.D also which can be another cause in being tired . Hang in there ,also your 12.4 is at a normal level but if it drops below that it will put you in the anemic catigory ,in a short time your body will replenish itsself so you will be in great shape by the 24th .Welcome to the group and do not hesitate to leave a post here ,there is always someone here , Queenie
deleted_user
I was diagnosed with hemo about 3 month ago. I to felt very tired at that point. I got up in the morning to go downstairs to sit on the couch for pretty much the rest of the day. My husband would come home around 4:30 and I be sleeping or playing games. No energy to do anything else. Had no clue what to cook or if I wanted to cook. Many time we had to order or just heat up a pizza. Normally I am a high energetic person. All of that was gone and it was real scary. I think my husband was just as scared. He really didn't know how to handle the situation. I had 3 phlebotomies done and I feel great. Have all my energy back and able to live life like I used to. My hemoglobin was over 15 and now its down to 12. My doctor wants to take it down to 11 and then we'll see how often I have to go for bloodletting. I sure you will get more energy after you get rid of some of the iron. Hang in there!
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