Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 I was diagnosed w/ graves in 7/99 and was on PTU until this past summer when I was taken off due to skin reactions I started having. Did RAI on 8/19. I really haven't noticed a significant change since RAI and at my last dr. appt. this past week he said that he thinks the RAI " just made my thyroid mad " . My " numbers " are not coming down as he anticipated. He thinks I should continue on beta blockers which he doubled and that I will probably need to either redo RAI next spring (which he doesn't really recommend) or have surgery done. At any rate he said we should just stay on BB and cruise until next spring to see what numbers look like at that point and then make a decision about what I want to do. Actually I don't want to do RAI or surgery. I told him I would do " just about anything " if I thought it could preclude either choice. I intend to become a yoga fanatic if it could help. What have been some of you all's experiences - those of you who have had RAI. How long did it take to tell if it worked or not? So far my numbers have gone down somewhat just not what he expected by now. If RAI works, does it work buy a certain time or not at all?? I'm more interested in hearing actual experiences then in hearing opinions on RAI as I've already done it and can't go back now anyway. I do not feel hyper now except on certain days or when I get riled up as opposed to when I was first diagnosed when I lost mega lbs. shook like an old person and basically acted like someone who did way too much cocaine. I feel fairly grounded. Again I know RAI is not the popular choice of many on this group but hopefully I am looking for some experiences and solid information on how others have been effected when they went the RAI route. Thanks Debbie in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 I was diagnosed w/ graves in 7/99 and was on PTU until this past summer when I was taken off due to skin reactions I started having. Did RAI on 8/19. I really haven't noticed a significant change since RAI and at my last dr. appt. this past week he said that he thinks the RAI " just made my thyroid mad " . My " numbers " are not coming down as he anticipated. He thinks I should continue on beta blockers which he doubled and that I will probably need to either redo RAI next spring (which he doesn't really recommend) or have surgery done. At any rate he said we should just stay on BB and cruise until next spring to see what numbers look like at that point and then make a decision about what I want to do. Actually I don't want to do RAI or surgery. I told him I would do " just about anything " if I thought it could preclude either choice. I intend to become a yoga fanatic if it could help. What have been some of you all's experiences - those of you who have had RAI. How long did it take to tell if it worked or not? So far my numbers have gone down somewhat just not what he expected by now. If RAI works, does it work buy a certain time or not at all?? I'm more interested in hearing actual experiences then in hearing opinions on RAI as I've already done it and can't go back now anyway. I do not feel hyper now except on certain days or when I get riled up as opposed to when I was first diagnosed when I lost mega lbs. shook like an old person and basically acted like someone who did way too much cocaine. I feel fairly grounded. Again I know RAI is not the popular choice of many on this group but hopefully I am looking for some experiences and solid information on how others have been effected when they went the RAI route. Thanks Debbie in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi Debbie, You can read my personal story at the link below! God bless, Hashi's, Graves, TED worsened by RAI Sept. 2001 http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi Debbie, In my case RAI worked fast, but you can find lots of info in the literature showing how the time frame can vary. Most people become hypothyroid within the first 6 months but most everyone becomes hypothyroid within 10 years. While the primary effects of RAI last for about 8 weeks, the effects can persist much longer depending on the actual number of atoms in the dose. Hopefully, you'll be lucky and end up euthyroid for some time. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi Debbie- It's hard for me to remember since it's been so long ago. I don't think they had me on anything post-RAI. But it took about a year after RAI for my numbers to come down to a level that my doctors were happy with. Also, that was about how long it took for my hyperthyroid symptoms to disappear. Hope that helps. Take care, dx & RAI 1987 (at age 24) > I was diagnosed w/ graves in 7/99 and was on PTU until this past summer when > I was taken off due to skin reactions I started having. Did RAI on 8/19. > I really haven't noticed a significant change since RAI and at my last dr. > appt. this past week he said that he thinks the RAI " just made my thyroid > mad " . My " numbers " are not coming down as he anticipated. He thinks I > should continue on beta blockers which he doubled and that I will probably > need to either redo RAI next spring (which he doesn't really recommend) or > have surgery done. At any rate he said we should just stay on BB and cruise > until next spring to see what numbers look like at that point and then make > a decision about what I want to do. > Actually I don't want to do RAI or surgery. I told him I would do " just > about anything " if I thought it could preclude either choice. I intend to > become a yoga fanatic if it could help. What have been some of you all's > experiences - those of you who have had RAI. How long did it take to tell if > it worked or not? So far my numbers have gone down somewhat just not what he > expected by now. If RAI works, does it work buy a certain time or not at > all?? I'm more interested in hearing actual experiences then in hearing > opinions on RAI as I've already done it and can't go back now anyway. I do > not feel hyper now except on certain days or when I get riled up as opposed > to when I was first diagnosed when I lost mega lbs. shook like an old person > and basically acted like someone who did way too much cocaine. I feel fairly > grounded. Again I know RAI is not the popular choice of many on this group > but hopefully I am looking for some experiences and solid information on how > others have been effected when they went the RAI route. > > Thanks > Debbie in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Debbie, I had RAI in April, and went very hypo about two months later. I've had a hard time getting on a dose of Synthroid that feels right. I think maybe the RAI stunned my thyroid for a bit, but I'm pretty sure it isn't actually dead. I've been on 125 mcg, and I have a lot of swinging back and forth between hyper and hypo symptoms. Neither is as extreme as I had back last spring, but it is pretty annoying. I've read that the RAI can take up to ten years to kill the thyroid, but I'm not at all convinced that a link can be demonstrated between RAI and the demise of the thyroid a decade later... It can take quite a while, for sure, though. Since the PTU became a problem, did you consider the other ATD? Others on this list say that a person who can't take one often can take the other, despite what many doctors say. I would also think that if your symptoms are milder now, you might consider the herbal remedies (buglewood and ??? my mind blanks right now, but others on this list are pros at that.) I would go with yoga and anything else I could come up with to reduce stress and increase health. It certainly won't hurt, and may help. You might look into some of the dietary stuff as well. Just don't take everything you read about diet on this list as gospel for yourself!!! There are a lot of people here with different ideas about what works for them, and if you try to follow all the ideas at once you will promptly starve! I've tried to find some link between what I eat and when I feel especially hyper, and I'm not having much luck. Some red wines seem to do it for sure, but other than that I'm at a loss. Good luck! -- in Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 " S. Rout " wrote: > > I've read that the RAI > can take up to ten years to kill the thyroid, but I'm not at all > convinced that a link can be demonstrated between RAI and the demise of > the thyroid a decade later... I'm convinced, read the Gofman discussion on the dangers of radioiodine at ratical.org! You may think he is a mad radical, but he does know his maths, and collects the relevant figures in one place, even if you don't trust his analysis (although he is a highly skilled scientist, having made major contributions in both nuclear science, and heart disease), you can trust his honesty in presenting other peoples data accurately. Nuclear scientists have well calibrated risk tables showing proportion of patients becoming hypothyroid at different exposures to radioactive Iodine, with the passage of time. They have even fitted a simple formula, so that given the measured uptake (after you have RAI they should scan to measure absorbtion), they can calculate exposure to the thyroid, and thus deduce the probabilities involved for you. There is scope for error of course, people turn over thyroid hormone at vastly different rates, but to a good approximation any competent nuclear physicist should be able to churn the maths and tell you how you did. In most cases, even with poor absorbtion, 10 millicuries is a huge dose, and the thyroid is usually zapped in about 4 months, but nothing says it has to go quietly - alas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi - The actual number of years that it takes a thyroid to die varies widely. The decade number is just an endpoint where almost all patients that have had RAI no longer have any function left. It probably had more to do with the attempt that U.S. docs made for a while to make hyper patients euthyroid. In Europe, there's a study blasting U.S. docs for attempting it at all. Their theory is that patients suffer needlessly from bouncing around for years and it's very rare for them to get the right RAI dose for euthyroidism anyways. They attempted to make me euthyroid or to render me slightly hypothyroid with RAI. My thyroid ended up completely dying by the end of 6 years. I've heard verying amounts of time for people but most of their thyroids die by 10 years. I did converse with one fellow that had thyroid function after RAI at the 10 year mark but his was gone by 12 years. I think this decade mark will become rarer and rarer (we're already seeing it less and less) as U.S. docs stop attempting to make their patients euthyroid with RAI. It hasn't been borne out by studies and more and more doctors are just using a RAI dose that offs the thyroid as soon as possible. Take care, dx & RAI 1987 (at age 24) > I've read that the RAI > can take up to ten years to kill the thyroid, but I'm not at all > convinced that a link can be demonstrated between RAI and the demise of > the thyroid a decade later... It can take quite a while, for sure, > though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2002 Report Share Posted November 16, 2002 Hi - The actual number of years that it takes a thyroid to die varies widely. The decade number is just an endpoint where almost all patients that have had RAI no longer have any function left. It probably had more to do with the attempt that U.S. docs made for a while to make hyper patients euthyroid. In Europe, there's a study blasting U.S. docs for attempting it at all. Their theory is that patients suffer needlessly from bouncing around for years and it's very rare for them to get the right RAI dose for euthyroidism anyways. They attempted to make me euthyroid or to render me slightly hypothyroid with RAI. My thyroid ended up completely dying by the end of 6 years. I've heard verying amounts of time for people but most of their thyroids die by 10 years. I did converse with one fellow that had thyroid function after RAI at the 10 year mark but his was gone by 12 years. I think this decade mark will become rarer and rarer (we're already seeing it less and less) as U.S. docs stop attempting to make their patients euthyroid with RAI. It hasn't been borne out by studies and more and more doctors are just using a RAI dose that offs the thyroid as soon as possible. Take care, dx & RAI 1987 (at age 24) > I've read that the RAI > can take up to ten years to kill the thyroid, but I'm not at all > convinced that a link can be demonstrated between RAI and the demise of > the thyroid a decade later... It can take quite a while, for sure, > though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hi Debbie, I had RAI in 7/2000 and took 5 months to go hypo. The endo mentioned redoing the RAI after 4 months, but I held off and am glad I did. Of course, had I known then what I know now, I would not have had the first dose of RAI. Bertta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Hi Debbie, I had RAI in 7/2000 and took 5 months to go hypo. The endo mentioned redoing the RAI after 4 months, but I held off and am glad I did. Of course, had I known then what I know now, I would not have had the first dose of RAI. Bertta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 From what I understand RAI does definitely work, its just a matter of when. Typically, for those of you who have had RAI, when it does work, does it happen in a short matter of time like hours or days? Or does it usually occur very gradually over, say, several months or weeks? And if you're one of the ones who it doesn't work on for year+ does that usually mean you have just as high occurance rate with side effects or is it somewhat diminished when it happens over a longer period of time? Is this too deep? I suppose I am making sense to some. Does anyone have any clue on the average percent of those who actually become euthroid thru RAI? or does it mean that these are the people who it is taking years for the RAI to work on and they are just euthroid for a period of time until the " other shoe drops " ? What would be some reasons RAI wouldn't " take " ,or again, is it just because it hasn't caught up with a person yet? Is it possible for it to literally not work on someone? My endo thinks perhaps it didn't work on me cause I'm not already miserably hypo. He is not pushing to make any further choices now but says he will start talking to me about the next step sometime in February and doesn't recommend RAI again but maybe surgery. He knows I'm hard headed about this stuff so is good about not giving me ultimatums as the last " fired " endo did. I've just become curious about some of these issues since my appt. w/ him. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 Hi Debbie, I was put on thyroid hormone replacement hormone 2 weeks post RAI. I was not told prior to RAI if I needed to stop Tapazole (on which I was stabilized) so I took it until the day I had RAI. God bless, Hashi's, Graves, TED worsened by RAI Sept. 2001 http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=001091;p=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2002 Report Share Posted November 19, 2002 > My endo thinks perhaps it didn't work on me cause I'm not already > miserably > hypo. Debbie, I don't remember all your dealings with this endo but tread carefully - it may be time for an endoectomy. (Or is that endo transplant?) Being miserably hypo should never be a goal. Recently someone did mention that it is less common for endos to aim for a euthyroid state, but it does happen. Cheers for you if it did. If not, and you are no longer hyper but hypo, any decent dr. should aim for arresting the hypothyroidism through educated use of thyroid hormone replacement. Take care, Fay ________________________________________________________________ Sign Up for Juno Platinum Internet Access Today Only $9.95 per month! Visit www.juno.com Quote Link to comment Share on other sites More sharing options...
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