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Thyroid (Expert Forum)
Contradictory info about RAI for Graves !!!?!!?????
Answered by
Mark Lupo, M.D. - Thyroid Nodules, Thyroid Cancer, hyperthyroidism, hypothyroidism, Thyroid Ultrasound
Thyroid & Endocrine Center of Florida
Sarasota - FL
Questions in the Thyroid forum are answered by Dr. Mark Lupo. Topics covered include goiter, graves disease, Hashimoto's thyroiditis, hyperthyroid, hypothyroid, thyroid cancers, thyroiditis, and thyroid stimulating hormone (TSH).
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Contradictory info about RAI for Graves !!!?!!?????
by Nomes, Sep 11, 2005 12:00AM
Hi!
My specialist is totally reccomending Radio-active Iodine Treatment for Graves. He says it i safe, effective, easy and harmless. Other National Graves websites (ie Australia, USA)also reccomend this treatment as good and even the best way to safely treat Graves.
However there are lots of other websites full of horror stories of people who followed this advice, then majorly regretted it. They had soooooooo many problems after and wished they could undo it all - preferring to have graves than RAI induced hypo.(hypo problems, weight gain, major eye disease stuff etc). I've also read on the net there have been studies of people who had RAI with crazy results - cancer (thyroid and bowel) permanent thyroid problems, dying younger and all other stuff that freaked me out.
If it is true so many people blindly have it and then are sick, sick, sick - why is it still reccomended???
What am I supposed to do????
What am I supposed to believe????
I just want to get better!!!!!
My specialist is totally reccomending Radio-active Iodine Treatment for Graves. He says it i safe, effective, easy and harmless. Other National Graves websites (ie Australia, USA)also reccomend this treatment as good and even the best way to safely treat Graves.
However there are lots of other websites full of horror stories of people who followed this advice, then majorly regretted it. They had soooooooo many problems after and wished they could undo it all - preferring to have graves than RAI induced hypo.(hypo problems, weight gain, major eye disease stuff etc). I've also read on the net there have been studies of people who had RAI with crazy results - cancer (thyroid and bowel) permanent thyroid problems, dying younger and all other stuff that freaked me out.
If it is true so many people blindly have it and then are sick, sick, sick - why is it still reccomended???
What am I supposed to do????
What am I supposed to believe????
I just want to get better!!!!!
Doctor's Answer
by Mark Lupo, M.D., Sep 16, 2005 12:00AM
, Sep 16, 2005 12:00AM
There is not an easy answer to this question. RAI is a very effective treatment for Graves. The "horror stories" are out there, but these are rare - the weight is b/c the hyperthyroidism (ie, burning higher # calories a day) is corrected. Eye disease should be looked into before RAI - if there is Graves Eye disease, then this needs to be treated with prednisone, etc prior to RAI to prevent eye disease getting worse after RAI. Cancer is NOT associated with low dose RAI that we use in Graves disease/hyperthyroidism. Dying younger has NOT been associated with RAI for hyperthyroidism.
RAI cures Graves hyperthyroidism 85% of the time and does not have the side effects of tapazole/PTU (ie, liver damage, bone marrow toxicity, rah and joint pain) -- BUT it will cause most patients to be permanently HYPOthyroid which requires lifelong treatment with a med such as synthroid -- much safer in the long run than taking tapazole/PTU longterm.
If patients are reluctant to treat definitively with RAI, then a 12-18month trial of tapazole is recommended (if tolerated....)
RAI cures Graves hyperthyroidism 85% of the time and does not have the side effects of tapazole/PTU (ie, liver damage, bone marrow toxicity, rah and joint pain) -- BUT it will cause most patients to be permanently HYPOthyroid which requires lifelong treatment with a med such as synthroid -- much safer in the long run than taking tapazole/PTU longterm.
If patients are reluctant to treat definitively with RAI, then a 12-18month trial of tapazole is recommended (if tolerated....)
I was diagnosed with Grave's Disease in February and like you my endocrinologist recommended the RAI treatment. I just wanted to feel better so I listened to him because I trusted him. Oh how I wish I would have got a second opinion. I had the treatment and am now hypo for the rest of my life and stuck on Synthroid which is a terrible drug and I haven't felt good since all of this happened. I feel like I am 80 and I am only 31. I would opt for the suppression treatment first. It is worth a try and then if that doesn't work you can always have the RAI treatment. I hope all goes well for you!
Jennifer
To be honest I would rather be hyper some days than to deal with all of the symptoms of being hypo and also the side effects of the medication. The only weight I put on after the RAI treatment was the 8 lbs. I lost while I was hyper. So I am currently at the weight I have been at for the last 14 years. I think that the RAI induced hypo can be worse in some cases because like for me it happened so quickly that I was almost in a coma 6 weeks after the treatment. My heart rate was only 50 beats a minute when I went to the emergency room in April because my stupid endo waited too long to put me on Synthroid and by doing that my body went in to shock, and needless to say it hasn't been a fun ordeal. Not everyone has the same outcome, take my mom for example, she had the RAI treatment 15 years ago, has been on Synthroid and has been fine ever since. I just wasn't as fortunate as her. Everyones situation is unique. I wish you the best in whatever you decide.
Jennifer
Thank you for letting me know what has happenend to you.
I have been on pills now for 5 months - no change in my levels.
Did you prefer being hyper?
Did you put on weight after RAI?
Do youn think RAI induced hypo is worse than normal hypo?
I still have so many questions.
Doesn't it all just drive you crazy??????????
And by the way, I wouldn't have had RAI if I had done some research first. But my endo gave me the choice of RAI or surgery, never mentioned that I could just stay on the ATDs. I also think Graves was in my case a misdiagnosis, as I was previously Dx as borderline hypo 30 years before, and have the antibodies for Hashimoto's disease.