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Hemochromatosis and Graves
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?
Hi, I also have haemochromatosis and Graves disease. Apparently is pretty rare and it seems that it is more common to have hypothyroidism than Graves. I find that when my iron stores goes up, so does my t4 and t3 and my tsh goes down to nothing. I was thyrotoxic and in iron overload and felt like hell. It felt like an inferno was going on in my body, even with a fan blasting on me all night long. Just had a venesection and fainted at the end of it, probably from taking propanalol (Beta blocker) Ive never had that happen before. Hope you are ok. Ros
I have graves and HH. So does my sister. Might have taken seven years, but you found two of us!
Can you have the radioactive done for thyroid if u have HH? Can you take thryoid med. tapazole with HH? I had thryoid CT but understand when they check ur thyroid the machine cannot tell if it is iodine or iron in pictures or results. Forgive quick questions, just found out I had HH, had two phlebot. First one ok, second one this week I have 4 holes and one bruise, not looking forward to a year of this. All new to me, still in partial daze.
Still out there?
I have both. How is it going for you?
The copper to iron inbalance that HH causes seems to agravate my Graves alot.
Same for you?
I have both. How is it going for you?
The copper to iron inbalance that HH causes seems to agravate my Graves alot.
Same for you?
Adding a little humor here.
I am trying to set the record again for the forums longest living post! Where's all my old buddies?
Tag........you're it
I am trying to set the record again for the forums longest living post! Where's all my old buddies?
Tag........you're it
"I leave the party for a few days....."
A few days??? Where have you been? I like how you pop in and make a comment just to see if you can have the longest running post. Cheater!!! ;-)
How have you been? You've been missed!
Lori
A few days??? Where have you been? I like how you pop in and make a comment just to see if you can have the longest running post. Cheater!!! ;-)
How have you been? You've been missed!
Lori
I have Graves , suffered with hyperhtyroidism before I had RAI in June 2008.
I have been both Hyper and Hypo and suffered with legs aches and pains with BOTH symptoms.
As soon as I get my levels right, the aches go.
I take Magnesium on my Doctors advice for the aches and havent had them since taking one tablet a day for the last 5 weeks.
Ask your Doc to check yr vitamin levels as I was deficeint in Vitamin B12, Vitamin D, Zinc (that helps healing) and Magnesium (aches and pains).
Hope that helps you in some way.
Dont take anything until you have had blood testing for vitamin deficiency though.
I have been both Hyper and Hypo and suffered with legs aches and pains with BOTH symptoms.
As soon as I get my levels right, the aches go.
I take Magnesium on my Doctors advice for the aches and havent had them since taking one tablet a day for the last 5 weeks.
Ask your Doc to check yr vitamin levels as I was deficeint in Vitamin B12, Vitamin D, Zinc (that helps healing) and Magnesium (aches and pains).
Hope that helps you in some way.
Dont take anything until you have had blood testing for vitamin deficiency though.
Just wanted to see if a post from almost a year ago could make it to the top. Were's all my old buddies?
To many new faces, I leave the party for a few days and the whole thing changes.
Go figure.
To many new faces, I leave the party for a few days and the whole thing changes.
Go figure.
Did you ever figure out how to get to sleep. i also have hereditary hemochromotosis and cant sleep at all. Its so miserable
Hi,
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.
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.
I don't have anything to add. I just wanted to see if I could set another record for the longest running post. I just got one answered from March. This one is from December!
There has got to be somebody else with Hemochromitosis and Graves. I know they aren't related but I have them both and want to compare my problems.
My GP thinks that I'm his new science project!
My GP thinks that I'm his new science project!
I'm of the Tapazole because the Endo suspected that my leg aches might be due to the med irritating my veins....that didn't work! The occasional muscle relaxer or pain med usually does the trick. The whole thing may be related to some lower back decay but the recent MRI didn't look horrible. They asked if I had been a line backer in school.....blown discs, etc.
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!
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!
I don't have Hemochromatosis, but I am Graves'.
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.
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.
Actually I was bumping it back up to the top of the forum so you didn't get lost in the noise. Unfortunately I can tell you all about thyroid cancer, RAI (for cancer), and hypothyroid but I'm completely lost with Graves and I'm anemic - other end of the spectrum from Hemochromatosis. Sorry. I'm going to off-line message GravesLady and see if she can weigh in.
Hang in there.
Hang in there.
I'm feeling unloved and lonely!
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.
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.
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