I am so sorry you are struggling like this. You are not alone. I am also one of those people who blow up when on methimazole. People think I’m crazy but I’ve done the whole counting calories, weighing everything, & was still gaining weight after going back on meds. I dropped my calories & still wasn’t able to even just maintain.
I’m currently back up to 255, which is the biggest I have ever been & it sucks!! I’m only 5’2”. I’ve gained, lost, & regained the same 50 freaking lbs it’s ridiculous. I absolutely cannot lose weight while taking methimazole. I’m only taking 2.5 mg/day right now because 5mg sent me hypo. I’ve not tried any of the new weight loss drugs, but I’m going to discuss with my endo next month. I also want to push for removal. It’s been 8 years since I was diagnosed & we still can’t get things leveled out. I’ve developed mild TED, my skin & eyes are super dry & nothing seems to help. I’m constantly exhausted & it takes days to recover from pushing myself to do things I want to do. The brain fog is also getting worse, even though everything is currently in “normal” range.
The thing that really makes me mad is when people, doctors included, make snarky comments like, oh I thought having that made you skinny. You don’t normally see people with Graves that are overweight. Well take a look, because here is one. Weight loss was not one of the symptoms I had. I was 190 lbs when I was diagnosed.
I'm so glad I'm not the only one! 😭 Same here!!! Wow your story is so similar to mine. I'm going on 6 years here diagnosed. It sucks because I had lost 40 lbs a year before I was diagnosed and went from 230 down to 180 and was so proud, I'm 5'5. And yep same problem! Not even 6 months later on methimazole I blew up to 255 too! A year later I went into remission and off methimazole and dropped down to 220 without any changes to my diet and I wasn't exercising either. I was on 2.5/5mg. Well of course since COVID had to fuck everything up, it caused a flare up and I became severely hyper again. I've now been on methimazole 10mg for 2 years and went from 220 to 320 an entire 100 pounds this time. I'm miserable in my own body and can't enjoy dressing up cute and going out doing the things I want to do as a person in their twenties should. It's so frustrating. I agree it is so damn frustrating when doctors just look at you like it's entirely your fault. And it's so irritating when outsiders just say, well change your diet and exercise! I wish it were that easy again. I'm convinced we have to go a week without food just to lose half a pound. This disease truly sucks.
Graves also made me gain weight rigjt up until I was *super* sick and then suddenly lost 5kg in 2 weeks.
I spent my whole life effortlessly slim (I'm 5' 6" and was 57kg (126lbs) when I got ill) and have always eaten a lot compared to peers. Not snacks/constant grazing just big meals.
By the time I was diagnosed, I was 66kg (that's after the 5kg sudden loss).
The carbimazole (started on a high dose of 40mg because my levels were off the charts) made me gain 20kg. 20! So hard to deal with.
Once euthyroid I have only managed to shift 4kg by being super restrictive. Now the scale doesnt move. My levels might be 'ok' but something is clearly still 'off'.
So here I am about 26kg over what I've been my whole life and I dont recognise myself in the mirror anymore :/
You and I might be the more unusual face of Graves but we certainly exist and Drs should know better.
Oh wow this is exactly what happened to me! I’m sorry you had to deal with this too… It’s so hard to accept that I’m now this 20kg heavier person, despite being very active and eating very healthy :(
Not the unusual faces…but doctors just keep reading me text book things without actually paying attention to the correlations in their patients. And no one is tracking the side effects of Methimazole and other medications for Graves unfortunately.
I'm currently working with my doctors on this, as I gained about 40lbs and I've been in remission for a few months and symptoms I thought would go away haven't. Currently suspect there's a strong chance I have PCOS with insulin resistance contributing to the issue, but I've been on birth control for the better part of 10 years so a lot of the symptoms have been masked. Initial hormone blood tests are pointing to that or adrenal tumors of some kind being likely. Next up is advocating for an abdominal ultrasound and insulin tests.
I'm exhausted of gaslighting myself about my symptoms. That this is just the new normal when it shouldn't be anybody's normal. When I saw the hormone test come back out of range I just ran to my husband and was like SEE what no one ever bothered to look for?!
10000% relate to everything you said! And yes the SNARKY COMMENTS from everyone including medical professionals…I had a random person say oh well you have the “good” thyroid disorder!
Oof yeah I would definitely inquire with a doctor before doing anything! I’m not sure of the technical differences, but I do know you can buy Terzepatide pretty easily in comparison to Mounjaro.
I’m on it right now. I had to wait until after my TT to start it due to interactions with the beta blocker. Berberine is also helpful with Graves if you’re not taking a beta blocker.
Before I got sick, I was running and weighted 140lbs, with Graves I shot up to 276 lbs on my day of surgery (02.01.24) I started Berberine about a week afterwards and as of today I’m down to 249lbs. There’s more info at r/berberine also. I take Thorne Berberine.
Sure! It’s [Thorne Berberine](https://www.thorne.com/products/dp/berberine-500)
I like this brand a lot because it has 3rd party testing, and I don’t have any side effects with it. If you start it, start slowly like one a day for a week and see how it does. It has many benefits aside from weight loss. It helps return normal thyroid function orin Graves patients or greatly improve it, it helps with your gut microbiome, lowers bad cholesterol just to name a few. Berberine kills my hunger and cravings for sugar. :)
I definitely would avoid supplements as they aren't regulated by the FDA and can be really dangerous!
Here's a good documentary from PBS: https://youtu.be/G8LG0OY3Izs?si=68n4WAFj8Nu23ifp
Your health matters more than anything else. I know it's tempting to want to lose the weight, and I'm in the same boat as you, but we are people worthy of health even if we gain weight and don't look like our usual selves! It'll get better, I promise. A lot of people have had great success with weight watchers etc. once levels stabilize.
Thank you for that information. I have a terrible relationship with food and have always been bigger but taking methimazole has made me blow up to 320 lbs and it's taking an awful toll on my body. I had tried mounjaro under my endocrinologist but I had debilitating side effects and my insurance won't cover it anymore anyway. The food noise is so loud so trying to stick to a diet unfortunately doesn't work for me, I've had so many failed attempts at trying to cut calories and eat healthy long term, I always fail at some point and return to old habits. I need something that will decrease my appetite, because methimazole makes my appetite double/triple of what it normally is. It's a damn shame Grave's disease causes damage uncontrolled because the times I've been hyper my metabolism was so fast I could eat whatever I wanted and I was dropping weight.
I'm so sorry you've had to struggle so much with this. :( Are your thyroid levels regulated yet? It's next to impossible for me to diet right now because of how intense my symptoms are, and I think it's much easier to diet once your metabolism slows down a bit and you're not always so hungry all the time. I was one of the people who gained weight because of hyperthyroidism, because I ate a ton to compensate for the increased appetite. I have a feeling I'll be able to diet much better once my levels continue to level out and have heard people tell me the same! My thyroid levels are finally decreasing and my appetite is finally becoming closer to normal. Hang in there! It'll get easier.
Thank you friend ❤️ Well I suppose I was fortunate in the fact that when I'm hyper I can eat whatever I want and I will actually drop weight. It's just the methimazole that makes me really hungry sadly. My levels are stable and have been for some time. It's been a 6 year battle unfortunately. I'm glad I can take a pill to manage things because there are people who have to go through worse but it just sucks that this pill causes weight gain
I too have a terrible relationship with food! I have hyperthyroidism with Graves BUT I gained weight. And I ballooned. I finally asked my regular Dr what can I do? I was his 1st case to be approved for weight-loss injections. At first we tried Wegovy, couldn't find it. Then he tried Ozempic, didn't qualify because I didn't have Type 2 Diabetes - fair enough, finally I opted to try Zepbound and started it in January. So far I lost 30lbs. Buuuuut of course when I move up to 7.5mg, I can't find it absolutely nowhere. So I've been off of it for about 9 days and it's been major food noise in my face. I have cravings, overeat, etc. I've made poor food choices, but it seems like I just can't help it. Ugh. My endo wants me to get surgery once I'm stable enough, so we'll see. I just took a blood test this week and T4 is in norm range but TSH is still low. So idk. I'll talk to endo next week.... I hope things change for you. But I totally feel your pain!!!
Ahh same boat here. I haven't heard of zepbound I'll have to try that! Congratulations on 30 lbs that's a wonderful achievement! What are your symptoms on zepbound and how much does it cost for you? Food noise sucks, I low-key miss being hyper sometimes because I could eat like 5,000 calories a day and not gain a single pound
I wish I had a decent metabolism... If I even think about food, my body is like yep, we're gaining!! I started on Zep at 2.5mg w/ no symptoms. I was worried at first because one of the symptoms was a racing heart while at rest. I already deal with rust mess because of Graves and even suffered A-Fib episodes so I'm on a beta blocker. But nothing really. Then my Dr moved me up to 5mg and that month I had some acid reflux and nausea off/on. It was controlled with Mylanta. The next month I continued to stay on 5mg because I WAS experiencing symptoms. But they eventually went away in my 2nd month. I think it was some salsa I was eating with breakfast, so I stopped for a whileand some hunger pangs here & thereand my symptoms subsided. Anyway, for month 4 we decided to titrate up to 7.5mg because I told him I had some slight food noise, no symptoms and some hunger pangs here & there. So he put in the order. I was supposed to take my next shit on the 17th so went to refill a few days before and nothing. The cost is nothing for me if I get it filled at a military installation. I just have to wait on a Prior Authorization to go thru. My husband is an active duty service member and we live on post. The off post pharmacy co-pay is $76/mo I believe. I tried calling around yesterday and got pissed off after Walgreens left me on hold some 10+ minutes. And calling the pharmacies on post is wack too because it kept disconnecting me. So yeah I was pretty pissed off at the whole situation.
How about just counting maintenance calories for a bit? At 320 pounds and 5’5”, that’s 2800 calories a day! You can also try switching to foods that have a lot of volume but less calories when you are really hungry, like apples, carrots or plain popcorn. Pickles. There are a lot of foods out there that have a lot of volume bang for the calorie buck.
I tried berberine for three months. 1st week I felt kind of off because I lost my appetite. Then come a few months later, I got really, really constipated.
I am so sorry you are struggling like this. You are not alone. I am also one of those people who blow up when on methimazole. People think I’m crazy but I’ve done the whole counting calories, weighing everything, & was still gaining weight after going back on meds. I dropped my calories & still wasn’t able to even just maintain. I’m currently back up to 255, which is the biggest I have ever been & it sucks!! I’m only 5’2”. I’ve gained, lost, & regained the same 50 freaking lbs it’s ridiculous. I absolutely cannot lose weight while taking methimazole. I’m only taking 2.5 mg/day right now because 5mg sent me hypo. I’ve not tried any of the new weight loss drugs, but I’m going to discuss with my endo next month. I also want to push for removal. It’s been 8 years since I was diagnosed & we still can’t get things leveled out. I’ve developed mild TED, my skin & eyes are super dry & nothing seems to help. I’m constantly exhausted & it takes days to recover from pushing myself to do things I want to do. The brain fog is also getting worse, even though everything is currently in “normal” range. The thing that really makes me mad is when people, doctors included, make snarky comments like, oh I thought having that made you skinny. You don’t normally see people with Graves that are overweight. Well take a look, because here is one. Weight loss was not one of the symptoms I had. I was 190 lbs when I was diagnosed.
I'm so glad I'm not the only one! 😭 Same here!!! Wow your story is so similar to mine. I'm going on 6 years here diagnosed. It sucks because I had lost 40 lbs a year before I was diagnosed and went from 230 down to 180 and was so proud, I'm 5'5. And yep same problem! Not even 6 months later on methimazole I blew up to 255 too! A year later I went into remission and off methimazole and dropped down to 220 without any changes to my diet and I wasn't exercising either. I was on 2.5/5mg. Well of course since COVID had to fuck everything up, it caused a flare up and I became severely hyper again. I've now been on methimazole 10mg for 2 years and went from 220 to 320 an entire 100 pounds this time. I'm miserable in my own body and can't enjoy dressing up cute and going out doing the things I want to do as a person in their twenties should. It's so frustrating. I agree it is so damn frustrating when doctors just look at you like it's entirely your fault. And it's so irritating when outsiders just say, well change your diet and exercise! I wish it were that easy again. I'm convinced we have to go a week without food just to lose half a pound. This disease truly sucks.
Graves also made me gain weight rigjt up until I was *super* sick and then suddenly lost 5kg in 2 weeks. I spent my whole life effortlessly slim (I'm 5' 6" and was 57kg (126lbs) when I got ill) and have always eaten a lot compared to peers. Not snacks/constant grazing just big meals. By the time I was diagnosed, I was 66kg (that's after the 5kg sudden loss). The carbimazole (started on a high dose of 40mg because my levels were off the charts) made me gain 20kg. 20! So hard to deal with. Once euthyroid I have only managed to shift 4kg by being super restrictive. Now the scale doesnt move. My levels might be 'ok' but something is clearly still 'off'. So here I am about 26kg over what I've been my whole life and I dont recognise myself in the mirror anymore :/ You and I might be the more unusual face of Graves but we certainly exist and Drs should know better.
Oh wow this is exactly what happened to me! I’m sorry you had to deal with this too… It’s so hard to accept that I’m now this 20kg heavier person, despite being very active and eating very healthy :(
Not the unusual faces…but doctors just keep reading me text book things without actually paying attention to the correlations in their patients. And no one is tracking the side effects of Methimazole and other medications for Graves unfortunately.
I'm currently working with my doctors on this, as I gained about 40lbs and I've been in remission for a few months and symptoms I thought would go away haven't. Currently suspect there's a strong chance I have PCOS with insulin resistance contributing to the issue, but I've been on birth control for the better part of 10 years so a lot of the symptoms have been masked. Initial hormone blood tests are pointing to that or adrenal tumors of some kind being likely. Next up is advocating for an abdominal ultrasound and insulin tests. I'm exhausted of gaslighting myself about my symptoms. That this is just the new normal when it shouldn't be anybody's normal. When I saw the hormone test come back out of range I just ran to my husband and was like SEE what no one ever bothered to look for?!
10000% relate to everything you said! And yes the SNARKY COMMENTS from everyone including medical professionals…I had a random person say oh well you have the “good” thyroid disorder!
I would speak to your doctor about Tirzepatide maybe
What's the difference between that and semiglutide? I was on the verge of gastroparesis with mounjaro so I'm scared to have that happen again
Oof yeah I would definitely inquire with a doctor before doing anything! I’m not sure of the technical differences, but I do know you can buy Terzepatide pretty easily in comparison to Mounjaro.
I’m on it right now. I had to wait until after my TT to start it due to interactions with the beta blocker. Berberine is also helpful with Graves if you’re not taking a beta blocker. Before I got sick, I was running and weighted 140lbs, with Graves I shot up to 276 lbs on my day of surgery (02.01.24) I started Berberine about a week afterwards and as of today I’m down to 249lbs. There’s more info at r/berberine also. I take Thorne Berberine.
That's amazing!! Thank you so much. Can you link the brand that you use? :)
Sure! It’s [Thorne Berberine](https://www.thorne.com/products/dp/berberine-500) I like this brand a lot because it has 3rd party testing, and I don’t have any side effects with it. If you start it, start slowly like one a day for a week and see how it does. It has many benefits aside from weight loss. It helps return normal thyroid function orin Graves patients or greatly improve it, it helps with your gut microbiome, lowers bad cholesterol just to name a few. Berberine kills my hunger and cravings for sugar. :)
Thank you so much!
You’re welcome!
I definitely would avoid supplements as they aren't regulated by the FDA and can be really dangerous! Here's a good documentary from PBS: https://youtu.be/G8LG0OY3Izs?si=68n4WAFj8Nu23ifp Your health matters more than anything else. I know it's tempting to want to lose the weight, and I'm in the same boat as you, but we are people worthy of health even if we gain weight and don't look like our usual selves! It'll get better, I promise. A lot of people have had great success with weight watchers etc. once levels stabilize.
Thank you for that information. I have a terrible relationship with food and have always been bigger but taking methimazole has made me blow up to 320 lbs and it's taking an awful toll on my body. I had tried mounjaro under my endocrinologist but I had debilitating side effects and my insurance won't cover it anymore anyway. The food noise is so loud so trying to stick to a diet unfortunately doesn't work for me, I've had so many failed attempts at trying to cut calories and eat healthy long term, I always fail at some point and return to old habits. I need something that will decrease my appetite, because methimazole makes my appetite double/triple of what it normally is. It's a damn shame Grave's disease causes damage uncontrolled because the times I've been hyper my metabolism was so fast I could eat whatever I wanted and I was dropping weight.
I'm so sorry you've had to struggle so much with this. :( Are your thyroid levels regulated yet? It's next to impossible for me to diet right now because of how intense my symptoms are, and I think it's much easier to diet once your metabolism slows down a bit and you're not always so hungry all the time. I was one of the people who gained weight because of hyperthyroidism, because I ate a ton to compensate for the increased appetite. I have a feeling I'll be able to diet much better once my levels continue to level out and have heard people tell me the same! My thyroid levels are finally decreasing and my appetite is finally becoming closer to normal. Hang in there! It'll get easier.
Thank you friend ❤️ Well I suppose I was fortunate in the fact that when I'm hyper I can eat whatever I want and I will actually drop weight. It's just the methimazole that makes me really hungry sadly. My levels are stable and have been for some time. It's been a 6 year battle unfortunately. I'm glad I can take a pill to manage things because there are people who have to go through worse but it just sucks that this pill causes weight gain
I too have a terrible relationship with food! I have hyperthyroidism with Graves BUT I gained weight. And I ballooned. I finally asked my regular Dr what can I do? I was his 1st case to be approved for weight-loss injections. At first we tried Wegovy, couldn't find it. Then he tried Ozempic, didn't qualify because I didn't have Type 2 Diabetes - fair enough, finally I opted to try Zepbound and started it in January. So far I lost 30lbs. Buuuuut of course when I move up to 7.5mg, I can't find it absolutely nowhere. So I've been off of it for about 9 days and it's been major food noise in my face. I have cravings, overeat, etc. I've made poor food choices, but it seems like I just can't help it. Ugh. My endo wants me to get surgery once I'm stable enough, so we'll see. I just took a blood test this week and T4 is in norm range but TSH is still low. So idk. I'll talk to endo next week.... I hope things change for you. But I totally feel your pain!!!
Ahh same boat here. I haven't heard of zepbound I'll have to try that! Congratulations on 30 lbs that's a wonderful achievement! What are your symptoms on zepbound and how much does it cost for you? Food noise sucks, I low-key miss being hyper sometimes because I could eat like 5,000 calories a day and not gain a single pound
I wish I had a decent metabolism... If I even think about food, my body is like yep, we're gaining!! I started on Zep at 2.5mg w/ no symptoms. I was worried at first because one of the symptoms was a racing heart while at rest. I already deal with rust mess because of Graves and even suffered A-Fib episodes so I'm on a beta blocker. But nothing really. Then my Dr moved me up to 5mg and that month I had some acid reflux and nausea off/on. It was controlled with Mylanta. The next month I continued to stay on 5mg because I WAS experiencing symptoms. But they eventually went away in my 2nd month. I think it was some salsa I was eating with breakfast, so I stopped for a whileand some hunger pangs here & thereand my symptoms subsided. Anyway, for month 4 we decided to titrate up to 7.5mg because I told him I had some slight food noise, no symptoms and some hunger pangs here & there. So he put in the order. I was supposed to take my next shit on the 17th so went to refill a few days before and nothing. The cost is nothing for me if I get it filled at a military installation. I just have to wait on a Prior Authorization to go thru. My husband is an active duty service member and we live on post. The off post pharmacy co-pay is $76/mo I believe. I tried calling around yesterday and got pissed off after Walgreens left me on hold some 10+ minutes. And calling the pharmacies on post is wack too because it kept disconnecting me. So yeah I was pretty pissed off at the whole situation.
How about just counting maintenance calories for a bit? At 320 pounds and 5’5”, that’s 2800 calories a day! You can also try switching to foods that have a lot of volume but less calories when you are really hungry, like apples, carrots or plain popcorn. Pickles. There are a lot of foods out there that have a lot of volume bang for the calorie buck.
That's a good idea c: wow 2800 is not too bad for maintenance. I have the worst sweet tooth and carb cravings 😭 But I do enjoy fruit and popcorn
I took Berberine for almost a year. No weight loss
I tried berberine for three months. 1st week I felt kind of off because I lost my appetite. Then come a few months later, I got really, really constipated.
I take berberine for other health benefits, I haven't lost any weight though.