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Hemochromatosis and Graves
by TheCarMan, Dec 31, 2007 09:58PM
Does anyone else have both Grave's Desease and Hereditary Hemochromatosis? I am being treated for both and wondered if anyone else has these symptoms and maybe a tolerable path that I might use? I'm either hot or cold at any given time. I have leg pain most of the time. I can't get to sleep and had to stop my excertise routine because I get so tired.
Because of the HH, the blood letting has taken my ferritin level below 10 from 300 about 5 months ago. My hematocrit began at over 50 and stays in the low 40s. My T3 was down to 3 on Tapazole and now that I'm off it's up to 140.
I feel pretty good except for the leg pain. I'm on beta blocker for the racing pulse (Grave's) and that seems to be OK. A Neurologist said that there isn't anything abnormal in the scans. An MRI on my lower back had some disc problems but nothing that should be causing ther pain.
What do you think is up with my legs?
Because of the HH, the blood letting has taken my ferritin level below 10 from 300 about 5 months ago. My hematocrit began at over 50 and stays in the low 40s. My T3 was down to 3 on Tapazole and now that I'm off it's up to 140.
I feel pretty good except for the leg pain. I'm on beta blocker for the racing pulse (Grave's) and that seems to be OK. A Neurologist said that there isn't anything abnormal in the scans. An MRI on my lower back had some disc problems but nothing that should be causing ther pain.
What do you think is up with my legs?
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Don't bump me, find me........nah, I'm allright I just know that someone has 2 diseases like mine. I'm not that special.
Hang in there.
WOW! I keep telling people that there is lot worse than thyroid out there and I guess you have one of them - Hemochromatosis. I hope you are doing well as can be expected with your Hemochromatosis.
Your leg pain and being tired is probably due more to Hemochromatosis.
You have a double WOW! with having both Hemochromatosis and Graves'.
Why are you off Tapazole? for the scan? The high T-3 is known as T-3 toxicosis seen in Graves', as you probably already know and can be dangerous if not corrected. Sleep, tiredness, and racing pulse is probably due to the toxicosis and once corrected these should some what subside. If not, treating each one separately for a while might do the trick. I suffered sleep issues every night for 6 years before I had enough and decided to do something about it. And it worked! I sleep pretty good now except for occasional night, which I can tolerate.
How did the tap do for your TSH and FT-4 and how are they doing after??
Are you planning on any other treatment than Tap?
Ok CarMan, if you have any questions about Gaves', I am here as well as others.
Happy New Year - Good Luck and Best Wishes for 2008.
So, I am trying to delay "swallowing the koolaid" (RAI) as long as possible. It looks like that will happen in the 1st quarter of this year. Also, I'm trying to eliminate a med at-a-time to see if the legs are a side effect or something with the HH or the bad back.
What did you do for the sleep? I've had that problem for years. Lunesta, Ambien, Ambien CR......I can stand on my head with that in me. I'm good for about 5 hours of sleep at the most.....I kind of just knock myself out. Too tired to read a book or count sheep. Seem to be OK all day though. I have a very busy kind of job so it's kind of a mental vacation at work as far a diseases go.
Mentally, I'm good. There's worse diseases. The HH is actually called the "good news disease"....all I have (had) to do is give blood once a week! Did that for 9 months....then once per month for 5 months and now 3-4 times per year.
With the two, it's hard to figure out which one is doing what to me. I found this forum and doing my own research and keeping my own records. I love my Dr.s but I'm the one responsible for me!
My GP thinks that I'm his new science project!
Geez - ............. dork!
New to the forum. Don't have Graves, but I don't have a Thyroid and I do have HH. Just got dx with Pancreatitis. Sounds like you have it pretty tough. Just wanted to say Hi.