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Old 09-16-2006, 05:07 AM   #1
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Did anyone with Grave's eventually go Hypo?

Hi, I have Grave's disease and have posted elsewhere what has happen to me during the last several years. ( i think it was on a thread called confussed on this forum).

I have a question. I go into remission for long periods of time, but i was told that eventually my thyroid will stop working alltogether and I will become hypo and have to go on suppliment thyroid anyway and why not do the RAI now and get it over with? I tell people that I dont want to becusae "I DO" stay in remission for long periods and why start screwing around if its not broken yet?

Has anyone been Grave's and eventually became hypo and had to do synthroid?

Any information would be helpfull thank you all, i really am enjoying reading on this site it is very informative.

 
Old 09-16-2006, 08:40 AM   #2
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Re: Did anyone with Grave's eventually go Hypo?

Hello, I have Graves diagnosed 2002, stayed on PTU for 2 years. Feb.2004 took RAI and went hypo 5 months after.

To be truthful, I should have stayed on the PTU because the RAI messed up my eyes for awhile. It caused an increase in thyroid hormones as the thyroid started dying off, which caused very rapid heartbeat. So, that was quite scary. I did take the RAI while being quite hyper, because you have to stop PTU for 2 weeks before RAI.

There are some people that do not have any problems, and others do. It's just a matter of a continuation of trying to find just the right amount of thyroid replacment to make you feel good.

I can honestly tell you that my life has definitely not been the same since RAI.
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Old 09-18-2006, 06:14 AM   #3
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Re: Did anyone with Grave's eventually go Hypo?

I recall a poster "Imoutrunning" who had Graves and her thyroid fizzled out and she became hypo. Haven't seen a post recently though.

 
Old 09-18-2006, 02:20 PM   #4
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Re: Did anyone with Grave's eventually go Hypo?

If you have RAI your thyroid eventually dies doctors say it's easier to control that way...they should read this board, every hypo question concerns meds,and how they feel awful

 
Old 09-19-2006, 01:53 AM   #5
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Re: Did anyone with Grave's eventually go Hypo?

My sister was diagnosed with Grave and took PTU eventually she was told her thyroid had "died" and she's been on thyroxine replacement ever since.
S

 
Old 09-19-2006, 03:35 PM   #6
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Re: Did anyone with Grave's eventually go Hypo?

I just found out today that I've gone hypo after being on Methimazole for Graves for the past 2 months. Apparently my dosage was too high. But, you know, I feel like crap! I thought I was having hyper symptoms (hot, can't sleep, faster heartbeat, anxious, restless) the past couple of days, but I got a call today saying my TSH is 3.06 and should be closer to 1. So they're decreasing my dose even more. I honestly don't know what to think with this crazy disease. It is soooooooooooo frustrating. The only hypo symptoms I've been feeling lately have been depression, fatigue(but I always have that no matter what), and anger. But who knows... Those could be caused by other things or it's just me. I don't know. I'm exasperated trying to figure out how to make my thyroid happy. I wish you and everyone else here much luck!!!


 
Old 09-20-2006, 08:57 AM   #7
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Re: Did anyone with Grave's eventually go Hypo?

Bothered I dont understand? The range for TSH is 0.3-4.5 and in some places i think it's 0.3-5.5. If you are TSH 3.06 why would they say you were hypo? That doesnt make sense to me at all. Unless they have other tests that show it. My Grave's disease tends to keep my tsh just barely in range. Like now it's at 0.7 and 2months ago it was 0.6. When i was pregnant it was around 1.6 and i think it went to 3.0 a few years ago. I wish it would stay in that range though, i dont like being on the lower end.

I am not willing to give up my thyroid just yet. Thank you all for the info, i wont do the RAI since my thyroid is being good and goes into remission on its own and stays there for long periods of time.

Bothered I would also look into other problems that might be causing other ailments. I have fatigue(also have 4 kids no question about that there lol), but i also get headaches and my head and face feel like it's going ot explode and thus i feel depressed(more like upset) cuz my head hurts and i know it's due to allergies. I have cold hands and feet and always have my entire life, so have my sister,my mother and all of mykids and sisters kids. It is just hereditary. When my thyroid acts up I do get hot too fast but i know that my symptoms stem from other stuff so i try to see what they are. LIke my allergies cause me to have fatigue and I swore up and down that i didnt have allergies. I WAS wrong lol. Just make sure you are getting the right treatment.

 
Old 09-20-2006, 09:54 AM   #8
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Re: Did anyone with Grave's eventually go Hypo?

mama, thanks for the info. i really am questioning what is going on. i may have to get a 2nd opinion. (i also have cold feet all the time!)

 
Old 09-20-2006, 12:36 PM   #9
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Re: Did anyone with Grave's eventually go Hypo?

I had graves disease back about 16 years ago. I was put on PTU for a few weeks to stabilize me and then given the radioactive iodine. After about nine months they gave me another dose of the radioactive iodine. My bloodwork still kept showing hyperthyroid but my body was screaming for help..... I was finally put on synthroid and since the iodine treatments even on the synthroid I have managed to gain 85 pounds. It does not matter what I do eat or not eat I can gain but not loose....I would not reccomend this treatment and if I could do this over I would have gone for surgery. I have also since had to have parathryoid surgery as they say the radioactive iodine caused a parathyroid to go hyper....I wish you the best of luck and if you can avoid treatment do so as long as possible.......

 
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