Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 After reading posts here over the past few days I have a question. For those that have become hypo after RAI (which is most likely everyone) did you not know this would happen? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Amy- I was told I'd either be euthyroid or slightly hypo. I knew I'd be hypo but thought it was easily treatable. Even though I thought I'd be hypo, I thought I would have some thyroid function left. Six years later I had none at all and that's when I really started having trouble. It isn't easily treatable in my case. I don't think I would have had the problems I've had if it would have been caught earlier. Take care, > After reading posts here over the past few days I have a question. > > For those that have become hypo after RAI (which is most likely everyone) did you not know this would happen? > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Amy, I think most everyone probably knew they would go hypo, but they were told it would be easier to treat than being hyper. Unfortunately, they've found out that's not the case. It seems everyone I hear out here has trouble for years getting their replacement hormone right, and even then, it's not the same as if their own thyroids were producing it. Of course, I would assume this would be the same for RAI and surgery both. The exception with surgery though is that you have a fixed amount of thyroid left after the surgery, but with RAI, the thyroid continues to die off for years. My doc insists it's 3 months for RAI the vast majority of the time, but I sure haven't seen anything out here yet to indicate that is true. I sure hope everything goes well with you and you get your levels straightened out very quickly. Really, there are people out there who do really well with the RAI. Just keep that positive attitude and take care of yourself and I'm sure you'll be fine! I'd hate for you to get bummed out about all that you're reading from this group. Hook up with Patti who also recently had RAI. You two can go through this together and really support each other as you go. Holly RAI Question After reading posts here over the past few days I have a question. For those that have become hypo after RAI (which is most likely everyone) did you not know this would happen? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Amy, I think most everyone probably knew they would go hypo, but they were told it would be easier to treat than being hyper. Unfortunately, they've found out that's not the case. It seems everyone I hear out here has trouble for years getting their replacement hormone right, and even then, it's not the same as if their own thyroids were producing it. Of course, I would assume this would be the same for RAI and surgery both. The exception with surgery though is that you have a fixed amount of thyroid left after the surgery, but with RAI, the thyroid continues to die off for years. My doc insists it's 3 months for RAI the vast majority of the time, but I sure haven't seen anything out here yet to indicate that is true. I sure hope everything goes well with you and you get your levels straightened out very quickly. Really, there are people out there who do really well with the RAI. Just keep that positive attitude and take care of yourself and I'm sure you'll be fine! I'd hate for you to get bummed out about all that you're reading from this group. Hook up with Patti who also recently had RAI. You two can go through this together and really support each other as you go. Holly RAI Question After reading posts here over the past few days I have a question. For those that have become hypo after RAI (which is most likely everyone) did you not know this would happen? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Amy, I think most everyone probably knew they would go hypo, but they were told it would be easier to treat than being hyper. Unfortunately, they've found out that's not the case. It seems everyone I hear out here has trouble for years getting their replacement hormone right, and even then, it's not the same as if their own thyroids were producing it. Of course, I would assume this would be the same for RAI and surgery both. The exception with surgery though is that you have a fixed amount of thyroid left after the surgery, but with RAI, the thyroid continues to die off for years. My doc insists it's 3 months for RAI the vast majority of the time, but I sure haven't seen anything out here yet to indicate that is true. I sure hope everything goes well with you and you get your levels straightened out very quickly. Really, there are people out there who do really well with the RAI. Just keep that positive attitude and take care of yourself and I'm sure you'll be fine! I'd hate for you to get bummed out about all that you're reading from this group. Hook up with Patti who also recently had RAI. You two can go through this together and really support each other as you go. Holly RAI Question After reading posts here over the past few days I have a question. For those that have become hypo after RAI (which is most likely everyone) did you not know this would happen? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 > For those that have become hypo after RAI (which is most likely everyone) did you not know this would happen? That was actually my whole reason for requesting RAI. I've got Grave's and Hashimotos -- I was suffering the symptoms of both, but no one would treat me because my TSH was going up and down, but still within the normal scale. I wanted to be either HYPER or HYPO, but not both -- so I requested RAI, thinking that being HYPO wasn't going to be a great experience, but at least I would be treated for one thing, instead of just being given pills for my symptoms. --patti *~*~*~*~* Patti Spicer patti@... " The silence is as important as the noise. What gets left out is as important as what gets included " --Sara Lawrence-Lightfoot, author of " I've Known Rivers " http://www.cyphergirl.com - My photography, cookbooks, thyroid info, and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Jody- I have no idea what they gave me. It took me a year or a little later to start on levothyroxine. So, technically, I guess I was considered one of the euthyroid post-RAI patients. I've seen a study on whether patients were either euthyroid or hypo following RAI. They only followed the patients one year out. They would have considered me a success story in that study. Take care, > Hi , > How many milicurries of I-131 were you given...just out of curiosity? > I had 13.9 and have been told by 3 different endo's and one nuclear med doc > that it was a low dose, a high dose, and an average dose. Pretty scary when > doctors can't even agree on what constitutes a low and high dose. > Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Amy- I meant if they had caught the hypothyroidism earlier, I might not have the problems I've had. They only relied on TSH levels and Total T4 levels with me. Unfortunately, I had a problem converting T4 (replacement thyroid hormone) to T3 (active thyroid hormone) which wasn't caught because they didn't ever test my T3 levels. I had pretty severe problems, many of them clearly hypothyroid, but they figured since I had a normal TSH, I was fine. I started trying to get pregnant when I was around 30. It took me almost 3 years and fertility drugs to finally get pregnant. When my son was 3, I started trying again. After almost 3 years of trying, I finally became pregnant again. I miscarried in November at 9 weeks (God! That is heartbreaking.). We just finished with an unsuccessful in-vitro fertilization (IVF) cycle this month and I wish we had been more aggressive earlier. It sounds like you are going to try to get pregnant as soon as you can after your waiting time post-RAI is over. I think that's a good thing to do. Fertility drops at around 30. There's a steep drop at 35 and it then plummets after age 40. Compound that with other endocrine problems and things don't look very good for me. You, on the other hand, are still young and don't have the years of being mismanaged to complicate things. Now, on to why some of us seem to feel more terrible being hypothyroid while some others do when we're hyperthyroid. I think some of us have different setpoints about where we're at. Although I was severely hyperthyroid (waking HR 150 bpm, huge goiter, exophthalmus, sweating and severe weakness), I felt fine after I was treated with ATDs. The doctor didn't make me hypothyroid on them. Since RAI my entire life and personality have changed. I was a very high-energy outgoing person all my life. Now I avoid social situations if at all possible because I'm just too tired for it. I think maybe if someone is the type of person I was, then hypothyroidism is terrible. Whereas, if someone is a calm steady person, then hyperthyroidism is intolerable. That's a generalization, of course, and there are all sorts of in betweens. So both hyperthyroidism and hypothyroidism might be equally awful but each to different kinds of people. Just something I've noticed over the years. Anyhow, I don't think because I've had the experience I've had, that you have to have it too. We're all different. Take care, > I am not getting bummed out at all. I did a lot of reading about RAI before I had it (not that I had any other choice). I knew full well that I may have some thyroid function left for some period of time (months, years, whatever) and that eventually I would be completely hypo and would need replacement hormones. I completely expect all of these things. I also know that whatever happens it will be better than when I was hyper. > > Amy Quote Link to comment Share on other sites More sharing options...
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