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Joined: Aug 03, 2011

Graves' Disease

Posted by @mandi, Aug 4, 2011

I am 36 years old and was recently diagnosed with Graves’ disease, which I believe is hereditary with my mother’s family. I tried Methimazole but after 3 weeks, I had an allergic reaction involving hives and severe joint pain. Because of this, my doctor advised against PTU.

Radioactive Iodine (RAI) is the next step for me but I’m worried about the after effects. My questions:

– What are the RAI after effects?
– Will the RAI treament prevent the Graves’ Disease symptoms, including irritability, hand/leg tremors and Graves’ ophthalmopathy?

Any input is appreciated.



Posts: 2
Joined: Jan 15, 2012
Posted by @cindi1997, Jan 17, 2012

I’m 57 years young and found out last Oct. 2011 I have Graves disease and my numbers were dangerously high so my doctor IMMEDIATELY sent me to get the ” Radioactive iodine capsule” late Oct. 2011. It took 2 weeks before I could tell anything was happening(which by that time I dropped so much weight I was almost in a size 2 and felt like I was going to die) BUT almost 2 weeks after taking capsule I finally was able to get up and get moving. Now since Oct. 2011 I’m at this time a SOLID SIZE 6 and very physically STRONG. The capsule WILL STOP THE OVERACTIVE THYROID soon, I believe, then I should go to HYPOthyroidism and be on SOME DRUG?? for the rest of my life. Before I took the radioactive iodine capsule I was agitated, irritable, very high anxiety, ATRIAL FIB when your heartrate beats 100 + times or even faster per minute, hand tremors, etc. and RIGHT NOW JAN. 2012 I no longer have afib, am VERY STRONG, still a bit irritable but am dealing with that WITHOUT ANY DOCTOR DRUGS because I CANNOT tolerate the way methimazole ( TAPOZALE) or PTU make me feel. If you have afib I pray you get to a really good ENDOCRINOLOGIST ASAP! DO NOT let your heart beat so fast you could die! Excuse me for being so blunt but you MAY have to take the radioactive capsule soon and it WILL HELP YOU. Now saying this I’m feeling like I’m going into HYPOthyroidism and am concerned about that because I DO NOT want to gain bunches of weight after going through what I’ve been experiencing. I asked doctors when I go into HYPOthyroid will I get HUGE and they said no but for some reason I’m not sure about that. I WILL continue to eat properly and EXERCISE EVERYDAY to keep from gaining weight. I hope this helps you as we PATIENTS must be our own DOCTORS as healthcare has changed FOREVER!! I know this from experience. I’ve had doctors ask me if I have a medical background because my terminology is like a doctors and I just say No, it’s from being sick for the past 1 and 1/2 years starting with cancer, afib, HYPERthyroidism, now very early stage of EMPHYSEMA, getting ready to go into HYPOthyroidism, etc. It sure would be nice to talk to someone who’s been thru HYPERthyroidism and KNOWS what I’m talking about. If ANYONE has already taken the “Radioactive Iodine Capsule” and been thru this rollercoaster ride PLEASE contact me ASAP! I need some HELP, ALSO. Thank-you so much cindi1997


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Joined: Apr 11, 2012
Posted by @annice, Apr 11, 2012

When did you take methimazole, or PTU, before or after the RAI treatment? I was diagnosed with Graves 11/2011 and have 2 cold nodules to watch as well. Methimazole gave me hives, so I have been on PTU ever since 12/2011. I am contemplating having my thyroid removed because of the possibility of the nodules becoming malignant. How long did your heart race and did you have leg muscle weakness? Are you presently taking synthroid?

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