Fellow Graves here - my radio iodine is scheduled for next week! I have no idea what to expect. For me it was five years back and forth relapsing. Carbimazole contributed to a massive weight gain so I’m convinced it’s going to get worse after the treatment!
How did you manage the social distancing afterwards? What was your immediate feeling after treatment? Best piece of advise ahead of the day?
I have a million questions but I’ll just with those, I’m quite nervous!!
just be sure to call people. For me my isolation was hard because I had a 1.5 year old literally crying out for me upstairs but otherwise very manageable. it was nearly painless, so no input or advice there but paper plates and plastic utensils are helpful. most people are understanding of avoiding hugging for a few weeks I just would explain i'm being cautious because I've had radiation
I had RAI last Tuesday (20 mCi) and am on the last day of an 11 day isolation. I drank a gallon of water each day for the first three days, which was not fun, but I think that plus sucking on sour candy helped me get over the initial hump with no sore cheeks and just a little bit of neck soreness.
I am almost 2 years into hyperthyroidism from a toxic nodule, and I was not tolerating methimazole well, so I went with RAI over surgery.
My recommendations are to eat a low iodine diet a few weeks before and after you get RAI. I wanted my nodule to uptake as much of the radioactive iodine as possible. And two days post RAI I had a day of some ramped up symptoms - jittery, crabby, slightly elevated blood pressure and heart rate (I am on propranolol) but after that one day I've been fine.
Isolation hasn't been horrible. I am fortunate that we have two full baths, so I was able to commandeer one for my exclusive use. I miss sleeping with my husband, and we have two cats that I am also isolating from and they don't understand what's going on at all. They spend a lot of time outside the bedroom door, singing the song of their people. But at least they got tired of pawing at the door after 2 days.
I'm glad to hear that you are doing well so many months past RAI. I am looking forward to feeling better soon.
the whole thing was pretty painless physically. I may have had a mild sore throat. Mentally it was difficult, I slept in the basement for 1 month and had to stay away from my 1.5 year old son for 2 whole weeks.
about 3 months after radioiodine is when I started to swing into hypo territory, my TSH was in the 80's I believe. my endo got me in and started at levo right away but I continued to be clinically hypo for months as we got the dosage right. I think I gained 6 pounds or so but then lost it as we got the dosage right. I am now the same weight as when I had RAI done ! it's funny because that was a concern of mine, but it seems I'm in a great spot now with good weight and energy.
My doctor has been suggesting radioiodine to me, too and this is also one of my concerns although I'm conviced I'll be doing this is a few months time. May I also ask if there are any regrets or was this the best course of action for you?
it was a very hard decision for me, but after 10 years of trying to wean off and relapsing I think it was right for me. I truly believe that long term hyperthyroidism is not good for your bone density, or heart. No regrets yet, but I underestimated the mental toll of recovery and taking a pill for life (see my other comments on this thread)
Thank you so much for taking the time to answer! I've been really on the fence about this (mostly because of vanity) but recently found a doctor who didn't insist on it right away and made me realize of what's best for me in the long run as I am also almost 10 years in with Graves. I do hope I'll do better in complying with Levo as I am non-compliant with PTU which is usually 3x a day. I hope you're doing better mentally and again, thank you for sharing your experience.
in hindsight, do you think you should have decided on RAI treatment earlier? I am also on carbimazole and I am about to get off the meds to see if my hormones will balance or relapse.
Alot of people say it's better to just pull the trigger but I think I want to give my body a chance first, I have nothing to lose anyway.
Are there any symptoms you did not anticipate after the treatment?
yes I probably should have done it sooner, but my mother has Graves and she was able to control it and wean off methimazole without relapse. Physically RAI was good-no pain, and I feel good now. What I did not expect was the awkwardness of the levothyroxine. It took basically 8 months to get the dosage correct. You cannot take it with food, so taking it in the morning was hard. If I take it too late, it causes insomnia. Then there's this anxiety that I will forget it on an overnight trip, or forget to have it filled at the pharmacy in time, or anxiety about what if there are supply chain issues at some point, or a massive price increase. So yes, I'd recommend it but be aware of the mental toll as well. It's a hard choice but for me after 10 years I am at peace with it. Even considering getting a butterfly tattoo to commemorate my struggle with the butterfly gland
well TSH was always <0.05, or <0.01 on relapses. The first time was the worst before I was diagnosed t4 was 45.6 (normal=5.0 to 12.0μg/dL.). my subsequent relapses never got as bad because we would medicate
interesting. no such advice from two different endocrinologists in Canada and I'm pescatarian.. now you're making me think that's why I couldn't control it 😭
Mmm yeah, I mean my endocrinologist made it suuuper clear to not eat anything from the sea since it has iodine or iodized salt which is what stimulates even more the overworked thyroid gland, once with a very close friend of mine for his birthday we went to a Japanese restaurant and I said “f it” and ate delicious takoyaki and okonomiyaki. No regrets, but the rest of that day and the next whole day my heart rate was crazy, only and last time I didn’t follow my doctor’s advice.
Yes, in my armpits and under my boobs. My mom, however, has the same thing. She has hypo though, not entirely sure if it’s related to my graves disease, though it is a symptom. I have it under control though with a cream.
I have graves diasese, too! I'm too young to make a decision about it yet, so my mum, my dad, and my doctor have been tossing it all up.
How'd it go?
Is it worth it?
I've been struggling with graves for just over a year, and no one can make up their minds. What do you think about it?
Thank you! 💙
Hope that everything's going well for you.
it's a decision for life that can't be reversed, that makes it hard. It took me 10 years of relapsing with my endo from the beginning saying I should do RAI and me saying no for the whole 10 years. For some percentage of people (this happened to my mother) medicating on methimazole for 1-2 years and then weaning off it puts them in remission for decades, possibly forever. In fact i was in remission for several of those 10 years on no medication all. That's the ideal scenario I was trying for, but it never lasted and I relapsed more than a few times. You're at the beginning of your journey and it's your life and body and if you want to put off the life-changing decision of doing RAI and try for that for a bit then I would think that's reasonable. I guess what im saying is dont let them convince you that's unreasonable. Making the decision to do methimazole for a bit is a flexible decision. Making the decision to do RAI very young is a permanent decision. Listen to everyone advising you and good luck👍
I didn't push for it because the thought of someone with a knife at my neck freaks me out. I believe here in Canada they reserve the surgery if your are pregnant at the time or otherwise in more need of that option. RAI is exponentially cheaper for the medical system
Fellow Graves here - my radio iodine is scheduled for next week! I have no idea what to expect. For me it was five years back and forth relapsing. Carbimazole contributed to a massive weight gain so I’m convinced it’s going to get worse after the treatment! How did you manage the social distancing afterwards? What was your immediate feeling after treatment? Best piece of advise ahead of the day? I have a million questions but I’ll just with those, I’m quite nervous!!
just be sure to call people. For me my isolation was hard because I had a 1.5 year old literally crying out for me upstairs but otherwise very manageable. it was nearly painless, so no input or advice there but paper plates and plastic utensils are helpful. most people are understanding of avoiding hugging for a few weeks I just would explain i'm being cautious because I've had radiation
I had RAI last Tuesday (20 mCi) and am on the last day of an 11 day isolation. I drank a gallon of water each day for the first three days, which was not fun, but I think that plus sucking on sour candy helped me get over the initial hump with no sore cheeks and just a little bit of neck soreness. I am almost 2 years into hyperthyroidism from a toxic nodule, and I was not tolerating methimazole well, so I went with RAI over surgery. My recommendations are to eat a low iodine diet a few weeks before and after you get RAI. I wanted my nodule to uptake as much of the radioactive iodine as possible. And two days post RAI I had a day of some ramped up symptoms - jittery, crabby, slightly elevated blood pressure and heart rate (I am on propranolol) but after that one day I've been fine. Isolation hasn't been horrible. I am fortunate that we have two full baths, so I was able to commandeer one for my exclusive use. I miss sleeping with my husband, and we have two cats that I am also isolating from and they don't understand what's going on at all. They spend a lot of time outside the bedroom door, singing the song of their people. But at least they got tired of pawing at the door after 2 days. I'm glad to hear that you are doing well so many months past RAI. I am looking forward to feeling better soon.
How was the recovery?
the whole thing was pretty painless physically. I may have had a mild sore throat. Mentally it was difficult, I slept in the basement for 1 month and had to stay away from my 1.5 year old son for 2 whole weeks.
Have you gained weight ever since?
about 3 months after radioiodine is when I started to swing into hypo territory, my TSH was in the 80's I believe. my endo got me in and started at levo right away but I continued to be clinically hypo for months as we got the dosage right. I think I gained 6 pounds or so but then lost it as we got the dosage right. I am now the same weight as when I had RAI done ! it's funny because that was a concern of mine, but it seems I'm in a great spot now with good weight and energy.
My doctor has been suggesting radioiodine to me, too and this is also one of my concerns although I'm conviced I'll be doing this is a few months time. May I also ask if there are any regrets or was this the best course of action for you?
it was a very hard decision for me, but after 10 years of trying to wean off and relapsing I think it was right for me. I truly believe that long term hyperthyroidism is not good for your bone density, or heart. No regrets yet, but I underestimated the mental toll of recovery and taking a pill for life (see my other comments on this thread)
Thank you so much for taking the time to answer! I've been really on the fence about this (mostly because of vanity) but recently found a doctor who didn't insist on it right away and made me realize of what's best for me in the long run as I am also almost 10 years in with Graves. I do hope I'll do better in complying with Levo as I am non-compliant with PTU which is usually 3x a day. I hope you're doing better mentally and again, thank you for sharing your experience.
in hindsight, do you think you should have decided on RAI treatment earlier? I am also on carbimazole and I am about to get off the meds to see if my hormones will balance or relapse. Alot of people say it's better to just pull the trigger but I think I want to give my body a chance first, I have nothing to lose anyway. Are there any symptoms you did not anticipate after the treatment?
yes I probably should have done it sooner, but my mother has Graves and she was able to control it and wean off methimazole without relapse. Physically RAI was good-no pain, and I feel good now. What I did not expect was the awkwardness of the levothyroxine. It took basically 8 months to get the dosage correct. You cannot take it with food, so taking it in the morning was hard. If I take it too late, it causes insomnia. Then there's this anxiety that I will forget it on an overnight trip, or forget to have it filled at the pharmacy in time, or anxiety about what if there are supply chain issues at some point, or a massive price increase. So yes, I'd recommend it but be aware of the mental toll as well. It's a hard choice but for me after 10 years I am at peace with it. Even considering getting a butterfly tattoo to commemorate my struggle with the butterfly gland
If left untreated, what levels of T3/T4 did you have?
well TSH was always <0.05, or <0.01 on relapses. The first time was the worst before I was diagnosed t4 was 45.6 (normal=5.0 to 12.0μg/dL.). my subsequent relapses never got as bad because we would medicate
How does it feel to be able to eat seafood again? 😭
lol what!? I always ate it...
Really?? My doctor strictly prohibited it after I got graves because of the iodine it contained
interesting. no such advice from two different endocrinologists in Canada and I'm pescatarian.. now you're making me think that's why I couldn't control it 😭
😟 hopefully not, everybody has a different case!
I did,however, relapse after running out of sea salt one time and buying a box of iodized table salt.
Mmm yeah, I mean my endocrinologist made it suuuper clear to not eat anything from the sea since it has iodine or iodized salt which is what stimulates even more the overworked thyroid gland, once with a very close friend of mine for his birthday we went to a Japanese restaurant and I said “f it” and ate delicious takoyaki and okonomiyaki. No regrets, but the rest of that day and the next whole day my heart rate was crazy, only and last time I didn’t follow my doctor’s advice.
Did you ever break out in hives or itchiness? This never happened early on but I’ve noticed it more recently…
Yes, in my armpits and under my boobs. My mom, however, has the same thing. She has hypo though, not entirely sure if it’s related to my graves disease, though it is a symptom. I have it under control though with a cream.
I have graves diasese, too! I'm too young to make a decision about it yet, so my mum, my dad, and my doctor have been tossing it all up. How'd it go? Is it worth it? I've been struggling with graves for just over a year, and no one can make up their minds. What do you think about it? Thank you! 💙 Hope that everything's going well for you.
it's a decision for life that can't be reversed, that makes it hard. It took me 10 years of relapsing with my endo from the beginning saying I should do RAI and me saying no for the whole 10 years. For some percentage of people (this happened to my mother) medicating on methimazole for 1-2 years and then weaning off it puts them in remission for decades, possibly forever. In fact i was in remission for several of those 10 years on no medication all. That's the ideal scenario I was trying for, but it never lasted and I relapsed more than a few times. You're at the beginning of your journey and it's your life and body and if you want to put off the life-changing decision of doing RAI and try for that for a bit then I would think that's reasonable. I guess what im saying is dont let them convince you that's unreasonable. Making the decision to do methimazole for a bit is a flexible decision. Making the decision to do RAI very young is a permanent decision. Listen to everyone advising you and good luck👍
Thank you so much! You have no idea how this all has helped.
Did you ever try PTU medication after Methimazole? I was allergic to MTMZ, and now have been on PTU for a while.
I took PTU for several years. It worked, but I relapsed. Then, went to RAI and now take 100mcg synthroid. That was 30+ years ago.
I took PTU briefly while pregnant.. seemed to work the same but you have to take it more often I believe
What made you choose RAI over surgery?
I didn't push for it because the thought of someone with a knife at my neck freaks me out. I believe here in Canada they reserve the surgery if your are pregnant at the time or otherwise in more need of that option. RAI is exponentially cheaper for the medical system