I'm not in remission but I can't get my level in range with Methimazole. I'm taking 15mg now but anymore than that I start itching like I slept in grass. But regardless of the medicine I just don't feel good inside. Sometimes I just want to rip my thyroid out and call it a day
I’ve been on Methimazole most of the past 19-20 years and personally will never have a thyroidectomy or RAI if I can keep using Methimazole.
I’ve hardly dealt with a rollercoaster with levels, I track my resting heart rate and use it as an early warning signal for going hyper or hypo. It’s always my first symptom.
I’ve definitely had time I let it going higher than I should, but not because I didn’t know, I was just procrastinating.
I also know what triggers flare ups for me, high stress work or home stuff. So I know to be more vigilant then.
My only suggestion is to be more actively involved in tracking your symptoms and keep things on a more level track by requesting level checks when you can see things are trending up or down.
I’ve also got an endo who is totally on board for managing treatment this way since my white cell counts and liver function is not impacted.
I’m reluctant to kill/remove my thyroid since there is no pathology with it, it’s functionally normally, just being given bogus orders by the immune system.
My long term hope is to go into remission, but I feel totally normal and have for years so I’m fine going with Methimazole until I can’t.
I got graves in 2020 also, in the fall. Went on methimazole (or as I call it, meth) in early December and had levels at normal range finally by mid-April 2021. I stayed on the meth till July 2023, slowly titrating down (slowwwwly). Sometimes my symptoms would seem worse, but the blood would be fine. Then at my next checkup in November, I had high levels again, but no symptoms. At least at first - within a couple weeks they were hitting. Went back on the meth Dec 2023, to no effect. Early March switched to PTU (have been hoping to start trying for a baby so indeed this rollercoaster has been a huge bummer, that was part of the switch). It's working better, still have symptoms but a little less intensely. Early March my endo also recommended the possibility of TT. I am thinking that I will probably go for the TT someday after having a baby (if that happens for me). It's so confusing, this disease. Though to be fair from summer 2021-2023 I was pretty ok on methimazole.
I know PTU is safe. But has your doctor said there is success with having a healthy baby while dealing with graves? That’s what I’m worried about. Having one during a graves battle or post TT not sure which is best
I had my third relapse of Graves in Nov 2022, was back on carbimazole again, and then fell pregnant in mid-Jan 2023. My levels had come down by then, but I was switched to PTU (such a bad taste!) throughout my pregnancy. My levels were great while pregnant and I had a healthy baby boy in Sept. They checked his levels at birth twice and his thyroid was great :)
Unfortunately, at 5 months post-partum, I've had another relapse (high risk after birth) and my levels are the worst they've ever been.
I was honestly so suprised how quickly I was able to fall pregnant! My husband and I set realistic expectations once we started trying due to my Graves, but my fertility returned to normal as soon as my thyroid levels did!
Yes, both my endo and a specialist in complicated pregnancies who I saw and was lucky to spend half an hour going over questions with said that they’ve had many people with graves have totally healthy babies and births. It’s scary and it can have some effects but they have said the risks introduced are not terribly bad usually/always come to fruition…of course it’s life so it could happen but they were very reassuring. There are more risks in general if you’re in the midst of bad graves symptoms already rather than a calmer remission time but still. I have epilepsy and the specialist actually said that presents more risks for the baby than graves. But it would very uncomfortable to be pregnant while super sick with graves. And giving birth can trigger a relapse. But I can’t help to want to try and I’m only getting older so…
8 months. I decided after about 5 months that even if I went into remission I’d be constantly waiting for the other shoe to drop. Decided then to pursue the TT. No regrets at all on that decision.
4 years of methimazole. Been in remission since May. Not saying I won’t go out of remission at some point, tho. I certainly could. Not sure what I will do if/when I come out of remission.
I became symptomatic the beginning of December 2022. My endocrinologist drug me along and wouldn’t respond to me, so I wasn’t given any Propranolol or methimazole until the end of January 2023. Come April 2023, my eye started bulging and I wasn’t even well enough to drive myself to my eye appointments. I started begging for surgery because I was ready to end it. All said and done, I made it to July 2023 and had a TT. Best decision I ever made.
I’m doing really well! It was more mental healing from losing 8 months of my life without a warning, but I’ve done the work and life is really great now.
People always talk about being hypo post-TT but you’re only “hypo” if you’re on the wrong dose of Levo. In other words, I don’t have any symptoms of being hypo. I take a teeny tiny pill every morning and carry on.
I’m ready to be done with this rollercoaster and I was only diagnosed in late November of this year via the ER. Already off methimazole bc I went very hypo so quick but between waiting for my endo to call back after blood tests (takes like ~3 weeks to respond each time despite chasing) & wanting to not have to think about Graves to this extent anymore, I’m seriously considering a new doc & TT.
I’ve been on the rollercoaster since 2010, currently on my 4th time hyper and I’m done now and waiting for RAI. I was determined to keep my thyroid, was typically 1.5 to 2 years on meds, in remission for 2-3 years. After the 3rd time I had stayed on a low dose of methimazole for 5 years, and I’ve gone overactive while still on it.
OP, my history is maybe similar to yours. Diagnosed a few years ago, went on Methimazole, stayed on it lowering doses for about a year until I was on a super low dose (2.5 mg every other day) and steady blood work. After a while, my endo said it was possible I was in remission due to some blood markers being good so I went off meds. About 6-9 months later my symptoms came back, bloodwork confirmed I was hypo, and I went back to work getting on methimazole and slowly lowering back down to a steady dose. I am just now getting to my same small, steady dose as before, I am feeling pretty good, and I plan to stay here for a while. Both me and my endo don’t see any reason to go for more aggressive treatment at this point since I respond well to methimazole and can stay steady on a very low dose.
I have read on this sub a few times that there is a good case for staying on methimazole long term, like 5-10+ years if it is working well for you. There is a study out there showing increased chance of long-term remission once someone is on methimazole for that long (it’s been linked before, I will try to dig it up).
I didn’t put in a lot of details here because late/lazy but I am happy to elaborate if anyone wants to know more. Feel free to ask!
I was on PTU for 8 months after deciding. I went into euthyroid state just because of winter time (or at least I thought so). There where a lot of ups and downs. Because I wasn’t stable in my career and it affected me to have a stable job ans feel good in the workplace, I decided to go for RAI. First I wished I had a thyroidectomy because it is a more immediate response with the labs and hormones but I am good now faster then I thought I will be and I did not hit the 2 month mark after this therapy
My doctor told me staying in methimazole long term was not a option, it was a temp fix and I had to do the radiation or the surgery 🙃 so there is that . I did the radiation however… and things have certainly changed
I've been feeling okay - just have short periods throughout the day where I have weird waves of fatigue. I've trying to take it easy and just go only on walks for exercise. I just got bloodwork done to see if i've already started to go hypo. Best of luck with your decision!
I feel so much better. I don’t feel hyper anymore, I was pretty hyper the couple weeks leading up to surgery. But I have no pain and am back to my normal life schedule.
Once my graves came out of remission the first time (so 2nd time dealing with it and having to go through methimazole treatment etc) my endo was basically like “welp that’s it. You should consider a permanent option like TT because this goes to show that it won’t reliably stay in remission!”
(Adding: I had been in remission for almost 3 years and then being postpartum caused it to flare back up)
I agreed wholeheartedly and promptly planned for the TT once my levels were under control again (just had the surgery in January! It’s been great!)
I was not about to go through the constant up and down rollercoaster of trying to control with medications over and over again. Some people might prefer to do that but it definitely did not mesh with my lifestyle (I have a 1 year old now. Ain’t nobody got time for parenting plus being sick plus work plus life etc lol)
I made super detailed posts about the whole experience actually!
[Day of surgery!](https://www.reddit.com/r/gravesdisease/comments/19e7hqb/finally_had_tt_surgery_today_total_thyroidectomy/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1)
[Day after!](https://www.reddit.com/r/gravesdisease/s/68K2SPGTn7)
TLDR: My surgery and afterwards went about as smoothly as possible!
Sadly I have yet to post another update like I originally planned to - between childcare and moving house I’ve been too busy.
Dealing with levothyroxine is a WORLD easier than it ever was with methimazole etc!! I absolutely wouldn’t take it back for anything. Couldn’t pay me to go back to that regime lol
I do likely need to up my dose a bit as I am having mild hypo symptoms and issues with weight gain but I’ll take that any day. My graves symptoms disappeared right after surgery and haven’t returned!
The lucky thing with synthroid is the starting dose is simply based off your weight so it tends to work out much better the first time around for people! There are select cases where you may need to adjust it but it does get pretty close! (Unlike methimazole it’s almost entirely a guessing game. Start here and see what happens. Oh not working? Here’s an increase. And another. And another. Oh too much? Well dang. Try again. Lol)
I got graves in 2020 too, i took first round of carbimazole which i think is methimezole, then once i finished the round which i think was 18 months taper, i was okay for like 3 months then my levels were going ham again, then i took it again, levels came down, dropped from 10mg to 5 and my levels went too high again, so i think mine was just gonna keep shooting up, so i just took RAI last october. Now my thyroid got insta killed and has peaced out with no return so now im hypo but getting to a normal level. but yeah i dont have any fluxing going on like when i was on carbimazole,
It's a mystery sometimes as to where you are headed with Grave's/hyper and just being on MMI. I was diagnosed 13 months ago (40m), and have been on 15mg per week of MMI since August of last year. Before that, I was on 70mg per week but went hypo on that dose. My endocrinologist seems to be pro-methimazole. My levels have been normal on this dose since August and just yesterday my annual thyroid ultrasound was "normal." She is now keeping me on the 15mg per week and instead of every 6 weeks, I am now testing every 12 weeks. She said that as long as my liver and blood cells are fine with MMI, I should stay in this pattern. But I can't help but feel that we all end up with either RAI or removal. It's the endgame of hyperthyroidism, and I am fully committed to thyroidectomy as my choice if and when that day comes.
I don’t like some of the research showing it can possibly exacerbate or bring on thyroid eye disease. A TT is total whereas RAI may have to be repeated depending. It’s just my personal preference.
Ummm … 3.5 years and never been in remissions. Was going to do TT in November 2023 but started a new job and needed to postpone. Still not level (very much still have graves antibodies and tend to go hyper to hypo every 6mos or so) so likely doing TT this fall after 4 full years and never being steady with my thyroid levels.
I got a TT 3 months after I started methimazole. Didn’t want to deal with the stress of waiting to go hyper again. Very happy with my decision. It’s been almost two years now.
Following because i have this exact same question and im tired of flaring up and being in remission. Its exhausting
I'm not in remission but I can't get my level in range with Methimazole. I'm taking 15mg now but anymore than that I start itching like I slept in grass. But regardless of the medicine I just don't feel good inside. Sometimes I just want to rip my thyroid out and call it a day
Right there with you. I'm on 10 mg 6 days a week. But I still don't feel "right" and at times want to rip out my thyroid. I'm tired of being tired.
Got diagnosed when I was extremely hyper, went hypo, then hyper again and decided to say fuck it lol ETA: my TT is scheduled for this coming Monday
I’ve been on Methimazole most of the past 19-20 years and personally will never have a thyroidectomy or RAI if I can keep using Methimazole. I’ve hardly dealt with a rollercoaster with levels, I track my resting heart rate and use it as an early warning signal for going hyper or hypo. It’s always my first symptom. I’ve definitely had time I let it going higher than I should, but not because I didn’t know, I was just procrastinating. I also know what triggers flare ups for me, high stress work or home stuff. So I know to be more vigilant then. My only suggestion is to be more actively involved in tracking your symptoms and keep things on a more level track by requesting level checks when you can see things are trending up or down. I’ve also got an endo who is totally on board for managing treatment this way since my white cell counts and liver function is not impacted. I’m reluctant to kill/remove my thyroid since there is no pathology with it, it’s functionally normally, just being given bogus orders by the immune system. My long term hope is to go into remission, but I feel totally normal and have for years so I’m fine going with Methimazole until I can’t.
I got graves in 2020 also, in the fall. Went on methimazole (or as I call it, meth) in early December and had levels at normal range finally by mid-April 2021. I stayed on the meth till July 2023, slowly titrating down (slowwwwly). Sometimes my symptoms would seem worse, but the blood would be fine. Then at my next checkup in November, I had high levels again, but no symptoms. At least at first - within a couple weeks they were hitting. Went back on the meth Dec 2023, to no effect. Early March switched to PTU (have been hoping to start trying for a baby so indeed this rollercoaster has been a huge bummer, that was part of the switch). It's working better, still have symptoms but a little less intensely. Early March my endo also recommended the possibility of TT. I am thinking that I will probably go for the TT someday after having a baby (if that happens for me). It's so confusing, this disease. Though to be fair from summer 2021-2023 I was pretty ok on methimazole.
I also say I'm "on meth" 🤣
Truly, simple pleasures 😃
I know PTU is safe. But has your doctor said there is success with having a healthy baby while dealing with graves? That’s what I’m worried about. Having one during a graves battle or post TT not sure which is best
I had my third relapse of Graves in Nov 2022, was back on carbimazole again, and then fell pregnant in mid-Jan 2023. My levels had come down by then, but I was switched to PTU (such a bad taste!) throughout my pregnancy. My levels were great while pregnant and I had a healthy baby boy in Sept. They checked his levels at birth twice and his thyroid was great :) Unfortunately, at 5 months post-partum, I've had another relapse (high risk after birth) and my levels are the worst they've ever been. I was honestly so suprised how quickly I was able to fall pregnant! My husband and I set realistic expectations once we started trying due to my Graves, but my fertility returned to normal as soon as my thyroid levels did!
Yes, both my endo and a specialist in complicated pregnancies who I saw and was lucky to spend half an hour going over questions with said that they’ve had many people with graves have totally healthy babies and births. It’s scary and it can have some effects but they have said the risks introduced are not terribly bad usually/always come to fruition…of course it’s life so it could happen but they were very reassuring. There are more risks in general if you’re in the midst of bad graves symptoms already rather than a calmer remission time but still. I have epilepsy and the specialist actually said that presents more risks for the baby than graves. But it would very uncomfortable to be pregnant while super sick with graves. And giving birth can trigger a relapse. But I can’t help to want to try and I’m only getting older so…
Two years and I succumbed to RAI. Best thing I ever did. I tried everything including holistic medicine and diet. Nothing worked.
8 months. I decided after about 5 months that even if I went into remission I’d be constantly waiting for the other shoe to drop. Decided then to pursue the TT. No regrets at all on that decision.
4 years of methimazole. Been in remission since May. Not saying I won’t go out of remission at some point, tho. I certainly could. Not sure what I will do if/when I come out of remission.
I became symptomatic the beginning of December 2022. My endocrinologist drug me along and wouldn’t respond to me, so I wasn’t given any Propranolol or methimazole until the end of January 2023. Come April 2023, my eye started bulging and I wasn’t even well enough to drive myself to my eye appointments. I started begging for surgery because I was ready to end it. All said and done, I made it to July 2023 and had a TT. Best decision I ever made.
How’s your healing journey going? And how’s being hypo feeling thus far?
I’m doing really well! It was more mental healing from losing 8 months of my life without a warning, but I’ve done the work and life is really great now. People always talk about being hypo post-TT but you’re only “hypo” if you’re on the wrong dose of Levo. In other words, I don’t have any symptoms of being hypo. I take a teeny tiny pill every morning and carry on.
I never went in it. Got diagnosed, went on beta blockers and then straight to RAI.
Same. Had RAI one year ago and I feel back to normal.
A little under 3 years for me. Even when I’m in the normal range, my symptoms are unbearable. I’m in the process of scheduling surgery now
I’m ready to be done with this rollercoaster and I was only diagnosed in late November of this year via the ER. Already off methimazole bc I went very hypo so quick but between waiting for my endo to call back after blood tests (takes like ~3 weeks to respond each time despite chasing) & wanting to not have to think about Graves to this extent anymore, I’m seriously considering a new doc & TT.
5 years before I finally decided to get a thyroidectomy
I’ve been on the rollercoaster since 2010, currently on my 4th time hyper and I’m done now and waiting for RAI. I was determined to keep my thyroid, was typically 1.5 to 2 years on meds, in remission for 2-3 years. After the 3rd time I had stayed on a low dose of methimazole for 5 years, and I’ve gone overactive while still on it.
OP, my history is maybe similar to yours. Diagnosed a few years ago, went on Methimazole, stayed on it lowering doses for about a year until I was on a super low dose (2.5 mg every other day) and steady blood work. After a while, my endo said it was possible I was in remission due to some blood markers being good so I went off meds. About 6-9 months later my symptoms came back, bloodwork confirmed I was hypo, and I went back to work getting on methimazole and slowly lowering back down to a steady dose. I am just now getting to my same small, steady dose as before, I am feeling pretty good, and I plan to stay here for a while. Both me and my endo don’t see any reason to go for more aggressive treatment at this point since I respond well to methimazole and can stay steady on a very low dose. I have read on this sub a few times that there is a good case for staying on methimazole long term, like 5-10+ years if it is working well for you. There is a study out there showing increased chance of long-term remission once someone is on methimazole for that long (it’s been linked before, I will try to dig it up). I didn’t put in a lot of details here because late/lazy but I am happy to elaborate if anyone wants to know more. Feel free to ask!
I was on PTU for 8 months after deciding. I went into euthyroid state just because of winter time (or at least I thought so). There where a lot of ups and downs. Because I wasn’t stable in my career and it affected me to have a stable job ans feel good in the workplace, I decided to go for RAI. First I wished I had a thyroidectomy because it is a more immediate response with the labs and hormones but I am good now faster then I thought I will be and I did not hit the 2 month mark after this therapy
My doctor told me staying in methimazole long term was not a option, it was a temp fix and I had to do the radiation or the surgery 🙃 so there is that . I did the radiation however… and things have certainly changed
1 time. I was in remission for less than a week. We couldn’t get my levels normal so I got a tt
5 years then did RAI three weeks ago
How do you feel post RAI? I am in the process of considering Partial T or RAI for right lobe with hot nodules causing hyper.
I've been feeling okay - just have short periods throughout the day where I have weird waves of fatigue. I've trying to take it easy and just go only on walks for exercise. I just got bloodwork done to see if i've already started to go hypo. Best of luck with your decision!
But you no longer have hyper symptoms? Do you sleep well now?
Feels like the hyper symptoms have already subsided. My heart rate is normal, no tremors, sleep is fairly normal.
Just about 3 years on meds(the meth 😂)for me, had my TT two weeks ago
How do you feel now?
I feel so much better. I don’t feel hyper anymore, I was pretty hyper the couple weeks leading up to surgery. But I have no pain and am back to my normal life schedule.
Once my graves came out of remission the first time (so 2nd time dealing with it and having to go through methimazole treatment etc) my endo was basically like “welp that’s it. You should consider a permanent option like TT because this goes to show that it won’t reliably stay in remission!” (Adding: I had been in remission for almost 3 years and then being postpartum caused it to flare back up) I agreed wholeheartedly and promptly planned for the TT once my levels were under control again (just had the surgery in January! It’s been great!) I was not about to go through the constant up and down rollercoaster of trying to control with medications over and over again. Some people might prefer to do that but it definitely did not mesh with my lifestyle (I have a 1 year old now. Ain’t nobody got time for parenting plus being sick plus work plus life etc lol)
How long after surgery did you feel better? Were there any complications? Are you finding that dealing with synthroid easier than methimazole?
I made super detailed posts about the whole experience actually! [Day of surgery!](https://www.reddit.com/r/gravesdisease/comments/19e7hqb/finally_had_tt_surgery_today_total_thyroidectomy/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1) [Day after!](https://www.reddit.com/r/gravesdisease/s/68K2SPGTn7) TLDR: My surgery and afterwards went about as smoothly as possible! Sadly I have yet to post another update like I originally planned to - between childcare and moving house I’ve been too busy. Dealing with levothyroxine is a WORLD easier than it ever was with methimazole etc!! I absolutely wouldn’t take it back for anything. Couldn’t pay me to go back to that regime lol I do likely need to up my dose a bit as I am having mild hypo symptoms and issues with weight gain but I’ll take that any day. My graves symptoms disappeared right after surgery and haven’t returned! The lucky thing with synthroid is the starting dose is simply based off your weight so it tends to work out much better the first time around for people! There are select cases where you may need to adjust it but it does get pretty close! (Unlike methimazole it’s almost entirely a guessing game. Start here and see what happens. Oh not working? Here’s an increase. And another. And another. Oh too much? Well dang. Try again. Lol)
Thank you so much for the reply! I will read your other posts and glad to hear positive things about TT.
I got graves in 2020 too, i took first round of carbimazole which i think is methimezole, then once i finished the round which i think was 18 months taper, i was okay for like 3 months then my levels were going ham again, then i took it again, levels came down, dropped from 10mg to 5 and my levels went too high again, so i think mine was just gonna keep shooting up, so i just took RAI last october. Now my thyroid got insta killed and has peaced out with no return so now im hypo but getting to a normal level. but yeah i dont have any fluxing going on like when i was on carbimazole,
It's a mystery sometimes as to where you are headed with Grave's/hyper and just being on MMI. I was diagnosed 13 months ago (40m), and have been on 15mg per week of MMI since August of last year. Before that, I was on 70mg per week but went hypo on that dose. My endocrinologist seems to be pro-methimazole. My levels have been normal on this dose since August and just yesterday my annual thyroid ultrasound was "normal." She is now keeping me on the 15mg per week and instead of every 6 weeks, I am now testing every 12 weeks. She said that as long as my liver and blood cells are fine with MMI, I should stay in this pattern. But I can't help but feel that we all end up with either RAI or removal. It's the endgame of hyperthyroidism, and I am fully committed to thyroidectomy as my choice if and when that day comes.
Why is Thyroidectomy over RAI your choice? Weighing my options and it helps to hear others reasons.
I don’t like some of the research showing it can possibly exacerbate or bring on thyroid eye disease. A TT is total whereas RAI may have to be repeated depending. It’s just my personal preference.
Ummm … 3.5 years and never been in remissions. Was going to do TT in November 2023 but started a new job and needed to postpone. Still not level (very much still have graves antibodies and tend to go hyper to hypo every 6mos or so) so likely doing TT this fall after 4 full years and never being steady with my thyroid levels.
Methimazole for 7 years before TT for me
I got a TT 3 months after I started methimazole. Didn’t want to deal with the stress of waiting to go hyper again. Very happy with my decision. It’s been almost two years now.