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 8, 2002 Report Share Posted March 8, 2002 Hi Amy, Actually, I was told I would become hypo, but I was also told that a pill would fix everything up. I naively thought I would have this extra edge with thyroid pills and always stay thin with little effort as I grew old. I had no idea that things don't work in such logical fashion. It's my own fault. I should have studied up on things, but I was impatient. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 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 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 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 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 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 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 Hi Amy: I had RAI in February 97, my thyroid seemed to bottom out in May and I started on synthroid. At first, it was fine. But in 99, suddenly my levels went wild. I spent 6 months trying to get my medication dosage right. What was so awful was the fluctuation in how I felt. I really think some of my problem was probably from the synthroid and the whole mess with the FDA not having it regulated like it should have been. Maybe some of the pills I had were sub-potent or whatever, but it was horrible for me and my family. My husband didn't know what to do with me. Not to mention getting tired of going and getting labs done every six weeks--I was convinced my arm was going to have a permanent hole from all the blood draws!! As if that wasn't enough, I ended up getting pregnant and really screwing up my levels and medication. My endo was even surprised I was able to get pregnant with my labs bouncing back and forth between hyper and hypo. Anyway, my point in this rambling is that even though many of us had been told and knew we would go hypo after RAI, no one bothered to explain the difficulties of regulating medication and that your dosage needs can change with no real rhyme or reason that you may be aware of. Being a part of this group has helped me learn the things I can do to try to keep my body on an even keel, like diet, stress relief, etc. I do wish I had found this group before I had RAI, because I probably wouldn't have done it so quickly. I have personally found that being hypo is much worse than being hyper. At least when hyper, I felt like doing things and participating in life. When I'm hypo, it's all I can do to get out of bed some days and I get terrible headaches. Anyway, that's my experience, but I certainly am not speaking for anyone else. Hope that helps answer some of the questions you've had. Take care, Beverly 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 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 _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. 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...
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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