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Old 03-15-2004, 11:33 AM   #1
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car guy HB User
Hemochromatosis

Hi; I am a 36 male in excellent healt. In december I started to feel very strange, almost uneasy. I wrote this off to stress and lack of sleep (new baby in the house) I went for a physical and after a CBC the Dr said I had elevated hemoglobin(17.7), hematocrit(50.9) and my transferrin saturation was 58% he gave me the dna test that confirmed hemochromatosis and i was sent to a hematologist. The hemotologist ran some tests, my hemoglobin was 16.6 and mty hematorit was 51.4 he also looked at my charts and told me to come back in 3 months, thats it. In the meantime I am still stressed out, I am starting to itch, not alot, but it comes and goes. My face is tingling, and i think i have two lumps on either side of the top my neck where it meets my head. The dr felt these and told me it was nothing but I am becoming quite a hypocondriac. I was wondering if anyone else out there had symptoms such as this. I have been surfing the web and I am convinced I have any number of horrible diseases. I do not itch after a warm bath and i have been excersizing as normal and have no fatigue and itching. Any light or comments will be greatly appreciated thank you

 
Old 03-16-2004, 06:44 AM   #2
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fudd HB User
Re: Hemochromatosis

Those lab values are completely in line with hemochromotosis. Sometimes you get increased iron simply due to having a different kind of anemia (not iron related), but not that high. Don't worry about it, with high Hb and crit and a really high transferrin, there's really not much else I would be considering.

Last edited by fudd; 03-16-2004 at 06:45 AM.

 
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Old 03-17-2004, 12:29 PM   #3
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Susannah HB User
Re: Hemochromatosis

Do you get your blood drawn regularly? It can really keep hemochromatosis at bay. My dad has it, and he goes and donates blood as often as he can.

The itching and hemochromatosis, the only relation between them that I can think of would be your liver. Sometimes when your liver is damaged, it can make you itch. A simple metabolic panel can assess how well your liver is functioning. Have you had one of these runs? It's a really cheap blood test, if you haven't had one, get one for the peace of mind.

Also, they can do a liver biopsy and assess what your liver looks like, but I wouldn't recommend that unless they suspect damage, there are risks associated with the biopsy.

Quote:
Originally Posted by car guy
Hi; I am a 36 male in excellent healt. In december I started to feel very strange, almost uneasy. I wrote this off to stress and lack of sleep (new baby in the house) I went for a physical and after a CBC the Dr said I had elevated hemoglobin(17.7), hematocrit(50.9) and my transferrin saturation was 58% he gave me the dna test that confirmed hemochromatosis and i was sent to a hematologist. The hemotologist ran some tests, my hemoglobin was 16.6 and mty hematorit was 51.4 he also looked at my charts and told me to come back in 3 months, thats it. In the meantime I am still stressed out, I am starting to itch, not alot, but it comes and goes. My face is tingling, and i think i have two lumps on either side of the top my neck where it meets my head. The dr felt these and told me it was nothing but I am becoming quite a hypocondriac. I was wondering if anyone else out there had symptoms such as this. I have been surfing the web and I am convinced I have any number of horrible diseases. I do not itch after a warm bath and i have been excersizing as normal and have no fatigue and itching. Any light or comments will be greatly appreciated thank you

 
Old 03-26-2004, 09:09 AM   #4
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Join Date: Mar 2004
Posts: 38
twest HB User
Re: Hemochromatosis

My mother, aunt and 2 of my brothers have hemochromatosis. None have experienced itching, tingling or lumps to my knowledge. However; they keep the blood monitored and do a regular flibodomy (spell?) inwhich they give blood on a regular basis to rid the body of some of the red blood cells it produces. Also were told not to eat much red meat and not to cook in an iron skillet. Good luck to you.

 
Old 04-07-2004, 12:40 PM   #5
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ODRAZ HB User
Thumbs up Re: Hemochromatosis

Hi Car Guy

My husband Gary was diagnosed with the same condition. We find most dr.'s like using the term condition not disease. His ferritin level was in the 800's. He was diagnosed about late January ,2004. He has been going to our local hospital every other week on a Thursday for treatment to remove the excess iron. He has a large amount of blood taken every other week. Last week his level was down into the 400 range, so the hematologist told him 1 or 2 more times and he will be done, except for a lifetime of donating at any blood clinic every 56 days. This guy has never been to dr.'s. I have many health conditions myself and he always found it amusing how ofter I have to go to appt.s Now its him. Also 2 weeks ago he had an ultrasound of his thyroid (TSH level 10.6) it has shown some nodules on his thyroid. Tomorrow he is booked for a radioactive scan of the thyoid, and waiting for an appt to see and endocrinologist and to have a fine needle biopsy of the thyroid as well. Hopefully this is not cancer. Hemachromatosis can cause a whole range of medical problems, so read up and be careful. Are you not having your iron removed by giving blood as well, this is the only treatment. My husband is 44 yrs old. Best of Luck.

Last edited by moderator2; 04-07-2004 at 03:45 PM. Reason: Please carefully read, know and follow the Healthboards.com Policies and Guidelines. Click on FAQ at the top left of this page. Thank you!

 
Old 04-15-2004, 08:47 AM   #6
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car guy HB User
Re: Hemochromatosis

Thanks for the reply. I had gone to the hemotologist in january and am going back again in 2 weeks for a follow-up visit. I feel about the same as i did back then so i will let you know what the results of my next visit are. I was just curious though, did your husband, or anyone else who reads this for that matter, have different symptoms that are not listed on the many different websites I have read? I haven't been feeling all that great for awhile, and i would hate to think that hemochromatosis is the LEAST of my problems...

 
Old 04-19-2004, 08:47 AM   #7
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ODRAZ HB User
Re: Hemochromatosis

In reply, my husband since last summer was feeling very fatigued, he works outside in the automotive field, and sometimes would be so busy but he had to come home rest and take a shower to regain energy, and aching muscles, we thought and his dr. thought he was anemic. Thats when all the genetic testing was booked and it took months to get in. He just had blood taken last Thursday at the hospital and since then has had bad bruising. This is the first time, his arm is puffy around the site and yellow and a bit blue, I told him to call the hematology dept. has this ever happened to you? He is not tired anymore like he was, although now he has just found out he has nodules on his thyroid and had a thyroid scan done last week, and now waiting to see an endocrinologist, hopefully not cancer, cancer is rare in the thyroid but does happen. What's new with your health.

 
Old 04-21-2004, 08:12 AM   #8
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Join Date: Mar 2004
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car guy HB User
Re: Hemochromatosis

Hi ODRAZ I went to the hemotologist on mondaay ..my hemoglobin and hemocrit are right at the top of the normal range (17.1 and 50%) I have to wait for my iron tests to come back, should hear either today or tomorrow about the levels, they have to send it to another lab. I'll let you know what the outcome is. BTW the Dr. told me that the worst thing I am doing is reading all these boards and getting myself all worked into a lather about every little thing...his exact quote " I am not concerned...if I was concerned I would tell you, then you can be concerned, try to use the internet for what it was intended for....buying stuff on EBAY!!!!" Anyway I thought it was pretty funny.....

 
Old 05-23-2008, 04:08 PM   #9
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tman2001 HB User
Re: Hemochromatosis

Hey,
Are you still online for the Health Boards as I have similar symptoms like yours and I had some questions for you.

 
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