I've wanted to add a reply regarding the prednisone / RAI article and have now noticed the EASY way to do that. ;)
Same question came up yesterday on Elaine's site, so here is her response:
***The first article is describing the way prednisone is sometimes given before RAI to help prevent thyroid eye diseae (TED). The article says that prednisone reduces the half-life of the radioiodine and that radioiodine clears the body faster so treatment may not be as effective. Simply put, it can take longer after ablation for the thyroid gland to completely die. On a side note, most experts don't recommend using prednisone with RAI since the side effects of prednisone can be serious and the risk for TED lasts so long, peaking at around 6 years post RAI. While people may not develop TED immediately after RAI, they're only getting short term protection, and as this article says, the RAI isn't as effective.***
The second article is regarding quality of life and I certainly agree, thyroid eye disease alters your whole world view and how others react to you, besides the pain and lack of proper vision. Even now with my eyes in complete remission, looking and working fine, I still react emotionally to the public's view that bulging eyes represent mental imbalance ( remember the media hay-day during the Runway Bride's story? ) and is often used in the entertainment industry as a way to "spot the monster/ bad guy". Sadly strangers passing in shops and on the street DO react as if such things are true. It seems to be a built in human response to a degree since small children are often frightened.
Thyroid Eye Disease is caused by our Graves' antibodies.Lowering those antibodies will allow the eyes to eventually return to normal appearance and function. RAI increases TSI antibodies the first year, changing to blocking/ binding antibodies at that time, with no chance of remitting. Post RAI patients are faced with the skewed TSH lab results due to these antibodies, so they must remain aware and keep up with proper FT4/FT3 lab work for life, obtaining the correct amount of replacement hormone for their needs, along with diet and lifestyle changes if needed, the same changes we all are wise to do. Doing these things can greatly lower their risk for thyroid eye problems as the years pass.
It breaks my heart every time, I meet a fellow eye sufferer, especially those newly diagnosed 10 , 20, 30 years post RAI. They have already been through too much.
Needless to say, the whole idea that taking steroids for a short amount of time could possibly prevent this is preposterous in my view. But I completely understand how new patients can be misled looking at the study. Most of our Graves' studies do have such a narrow focus, until one attempted to find full articles from all points of view on each aspect, looking for what are the missing elements in each study, can one start to try and find their way through this confusing disease.
I hope you are doing well, and do have a suggestion for future research if you are interested. I found digging through the various studies regarding remission rates a satisfying use of time. This varies so much by country ! As with all studies of this type, do look for "What's missing here" when reading these studies. Size of the group studied. How were patients recruited and selected? ( USA studies do tend to be largely welfare patients ( how is their lifestyle / nutrition available/ stress levels included in judging the outcome? ) How long was each study, and were the patients removed from their anti-thyroid medication by a calendar or when/ _which_ antibody counts were low enough to signal a true remission? How were their FT4 and FT3 levels managed during the study? What other factors were included?
One of the highest remission rates I found was done in Japan, with a fairly good set up as far as treatment routine and timing stopping the drugs. But the most fascinating aspect was that part of their treatment include counseling of their families . Boy ! Wouldn't that help with the stress? ;)
I've wanted to add a reply regarding the prednisone / RAI article and have now noticed the EASY way to do that. ;)
Same question came up yesterday on Elaine's site, so here is her response:
***The first article is describing the way prednisone is sometimes given before RAI to help prevent thyroid eye diseae (TED). The article says that prednisone reduces the half-life of the radioiodine and that radioiodine clears the body faster so treatment may not be as effective. Simply put, it can take longer after ablation for the thyroid gland to completely die. On a side note, most experts don't recommend using prednisone with RAI since the side effects of prednisone can be serious and the risk for TED lasts so long, peaking at around 6 years post RAI. While people may not develop TED immediately after RAI, they're only getting short term protection, and as this article says, the RAI isn't as effective.***
YOUR COMMENTS, PLEASE-ON 2 ABSTRACTS
http://www.elaine-moore.com/QA/tabid/57/forumid/6/threadid/4233/scope/posts/Default.aspx
The second article is regarding quality of life and I certainly agree, thyroid eye disease alters your whole world view and how others react to you, besides the pain and lack of proper vision. Even now with my eyes in complete remission, looking and working fine, I still react emotionally to the public's view that bulging eyes represent mental imbalance ( remember the media hay-day during the Runway Bride's story? ) and is often used in the entertainment industry as a way to "spot the monster/ bad guy". Sadly strangers passing in shops and on the street DO react as if such things are true. It seems to be a built in human response to a degree since small children are often frightened.
Thyroid Eye Disease is caused by our Graves' antibodies.Lowering those antibodies will allow the eyes to eventually return to normal appearance and function. RAI increases TSI antibodies the first year, changing to blocking/ binding antibodies at that time, with no chance of remitting. Post RAI patients are faced with the skewed TSH lab results due to these antibodies, so they must remain aware and keep up with proper FT4/FT3 lab work for life, obtaining the correct amount of replacement hormone for their needs, along with diet and lifestyle changes if needed, the same changes we all are wise to do. Doing these things can greatly lower their risk for thyroid eye problems as the years pass.
It breaks my heart every time, I meet a fellow eye sufferer, especially those newly diagnosed 10 , 20, 30 years post RAI. They have already been through too much.
Needless to say, the whole idea that taking steroids for a short amount of time could possibly prevent this is preposterous in my view. But I completely understand how new patients can be misled looking at the study. Most of our Graves' studies do have such a narrow focus, until one attempted to find full articles from all points of view on each aspect, looking for what are the missing elements in each study, can one start to try and find their way through this confusing disease.
I hope you are doing well, and do have a suggestion for future research if you are interested. I found digging through the various studies regarding remission rates a satisfying use of time. This varies so much by country ! As with all studies of this type, do look for "What's missing here" when reading these studies. Size of the group studied. How were patients recruited and selected? ( USA studies do tend to be largely welfare patients ( how is their lifestyle / nutrition available/ stress levels included in judging the outcome? ) How long was each study, and were the patients removed from their anti-thyroid medication by a calendar or when/ _which_ antibody counts were low enough to signal a true remission? How were their FT4 and FT3 levels managed during the study? What other factors were included?
One of the highest remission rates I found was done in Japan, with a fairly good set up as far as treatment routine and timing stopping the drugs. But the most fascinating aspect was that part of their treatment include counseling of their families . Boy ! Wouldn't that help with the stress? ;)
Looking forward to more posts from you.