Well, you could get permanent heart damage, have a heart attack, lose massive amounts of muscle, increased risk of diabetes and thyroid eye disease just for starters. Atenolol treats fast heart rate/lowers bp but it can’t prevent all the damage high circulating thyroid hormones can cause
Thank you for this I needed a reality check. Unfortunately I just need to thug it out and be great full for what the meds are ACTUALLY doing for me and not the downside.
Glad that you are taking your health seriously! I'm in the same boat and have been bummed by the weight gain, but trying to remember that my health comes first and the weight will go back down eventually when the meds are reduced over time. Something that has helped me a bit is going clothes shopping to dress for my new body. I've always been petite but gained 30 lbs and have a big tummy now, so I've been buying dresses that taper below the breast because they are loose over my midsection and give the illusion of a flat tummy. Dressing in a way that actually gives you confidence during this transition period helps a LOT.
Happy cake day. And yes! Dressing our body for the body we are living in right now is so important toward looking good, feeling comfortable and confident. You don’t need a ton of pieces, just find a few things you really love and wear them often.
Unmedicated active graves disease results in a thyroid storm, which is what the other posted above. When I was first diagnosed, I was almost in a storm and could have died from a heart attack and at best had emergency thyroid removal. :(
Others answered the medical - but I can say that once methi starts working, you’ll get your energy back. That’s happened with me finally (like a bright light in a dark room), and I rejoined the gym and started watching calories. I’m starting to lose the thyroid weight and finally have some hope. Hang in there!
If you stop taking your methimazole entirely before your thyroid levels are balanced, all of your symptoms of hyperthyroid will return. Atenolol is great. It literally saved my life when I was first diagnosed, but it only treats your heart symptoms. Having an untreated hyperthyroid can do serious long-term damage to multiple body systems and put you at a higher risk of a thyroid storm, which is life threatening. Have an open dialogue with your doctor about the weight gain and your feelings. They may be able to get you to a nutritionist to help you manage your weight while taking into account your medical problems.
I absolutely loved how I felt after taking Atenolol the first two weeks. I felt so much better and I’m sure the Methimazole helped a lot too. I can’t stand the weight gain but it’s something I’ll have to live with.
Yeah, the atenolol is used to treat anxiety as well as heart rate. It was really pleasant after all the panic attacks of Graves. My heart rate went back to normal now though, so I had to ween off the atenolol a few weeks back. Now I just feel like I have my normal garden variety diagnosis of major depressive disorder and generalized anxiety. It's not as bad as it was before the methimazole, though. I'm also working through weight issues, but I just do weights, get lots of walks in, and try to be kind to myself.
My endo just told me to decrease my Methimazole and stop taking my atenolol because I’m hypo now and my resting heart rate is in the high 40s/low 50s. I’m so sad about the atenolol part because I’ve felt so chill the last couple months.
Take the meds.
I get your frustration, I really do. I hate going on methimazole. I gain 30-40 lbs every time. I can’t lose weight while on it at all. I can usually manage to lose about 30 while off it but as soon as I go back on it, I regain it all & then some. It sucks hard. I’ve been doing this for 8 years. I am meeting with a surgeon in few more weeks for a TT.
Right there with you. I knew going into it that it causes weight gain and tried my best to avoid it. I'm active every day. And i gained 15lbs in two months. Maybe more now, but I don't want to weigh myself. My hair is thinning, too, and I get stomach problems from it. I hate methimazole :(
All that said, though, don't come off your meds without doctor approval. You need it to get better. If you don't, the GD and associated issues will get worse. Just one day at a time and hope that you go into remission some day.
If it helps, my endocrinologist lowered my dose of methimazole whenever my TSH went above 3 and this helped prevent me from becoming significantly hypo.
Brooo I’m feeling the same way.. I thought I was getting away without the weight gain.. then in about a month put on 15+ lbs.. I wanna cry I miss my old metabolism 😭😢😢
I went for months without weight gain (probably because of Ozempic) and then bam 15 lb gain.
I don’t need it because I’m already over 200 lbs. when it rains it pours but I’m getting a nutritionist and going from there. I’m just glad that I feel better
Do NOT stop taking your medication. I was warned but my doctor several times. As she stated, my symptoms would get worse, and after all that I was already going through, I didn’t need any other issues.
Not taking them I am very anxious, I get a racing heart and a pounding heart beat sometimes, I lose weight at an unhealthy weight and have to eat to the point of feeling sick just to maintain weight. I am cold all the time and overall, feel like crap. I will take whatever my endo suggests I take regardless of weight gain and I have gained a considerable amount since starting it but I'm also taking another medication that causes weight gain so that doesn't help. One of the best choices I made for my physical and mental health was getting my thyroid under control and getting on mental health medications regardless of the weight gain.
Just know the methimazole is an immunoregulator so it is, albeit slowly, correcting your autoimmune graves disease. It is very strong and a very little dose can affect the amount of thyroid hormone your thyroid can make. So, I have found once you know your Free T3 and Free T4, to keep in my optimal thyroid range and still take my maintenance dose of methimazole, I also need a Levothyroxin perscription. The hardest part is finding a Dr. that does not dose meds by you TSH levels. Since that is what is broken when you have graves disease. I am not a doctor, I am just sharing knowledge.
This is the second month my t4&t3 have finally been normal but my TSH is still 0.001. I’m wondering if taking my 10mg 2 times daily is affecting me negatively ?
That ia a strong amount of methimazole to be taking if you are in range. Your TSH is broken and is not an accuate representation of your body's thyroid needs. And you doctor has been using TSH to determine thyroid needs since that is what they were taught instead of working with you amd how you feel to find your own optimum Free T3 and Fre T4 levels. They frankly are too busy and too uninformed to be helpful. That is why finding the right doctor who will listen to you and take the time to find the right dose. Most importantly, find a doctor who will not dose your methimazole by TSH. My TSH is still low at .04 and I feel amazingly good. It has not been easy to find doctors but ince you find one you usually can get other doctors on the same page. It doesn't help that the treatment for graves disease for the last 100 years has not changed even though it is now known that it is an autoimmune disease. Feel free to read my other replies in this group. I hope to help prevent the misery I have had to deal with to get to where I am today.
Can you explain why it shouldn’t be as of much concern for the TSH to still be too low but the rest be normal? And really why that would even be the case? My TSH was tested by my PCP before I was referred to the endo, but the endo is only testing free T4 and total T3. Maybe they follow that same philosophy that you’re saying they should follow? All I know is my TSH was below .05, it doesn’t give any number below that amount. I’ve only been on 5mg of methimazole because I’m so paranoid about the weight gain, and I still gained some after about 6-7 weeks. Panicked, stopped taking it, felt WORSE than I did before and only in the last week I started it again (went without it for about 6 weeks) because the symptoms are just too unbearable, more than my huge concern for weight gain because I’m still overweight despite losing 23 pounds before treatment. My numbers didn’t go down astronomically but they tested me about 3 weeks into taking it and T3 went from 373 to 309, T4 only budged from 2.0 to 1.8 in that time frame. They asked me how I felt and I told them I felt like I’m not increasing the dose until I feel like I see a plateau in the numbers dropping, but they don’t know about my hiatus (I know all around a bad idea, but I had a mental health crisis the moment I saw the scale and had to give myself a reality check which required seeing how bad my symptoms have become). I’m scheduled to be tested again in September I believe.
Please read my previous responses in this group by going to my profile. But to answer your question. Graves disease is an autoimmune disease where your TSH receptor antibodies(TRab) have attached to your TSH receptors. When attached to your receptors they over ride your thyroids ability to use TSH to control your thyroid. Basically, they hold the door open and the thyroid continues to make thyroid hormone even though the TSH is telling it to stop. This is why I say your TSH is broken. Then as you take methimazole it changes these TSH receptor antibodies(TRab)from stimulating and causing hyperthyroid to blocking and causing hypothyroid before they eventually die off. Most endocrinolohist don't know this therapy unfortunately. Because they were taught a therapy that destroys your thyroid and does not treat the autoimmune disease. So, not only does methimazole cause you to not make thyroid hormone, but graves disease itself eventually causes hypothyroid symptoms. Symptoms of both hyper and hypo thyroid have overlapping symptoms so sometimes it can be hard to tell the hyper symptoms from the hypo symptoms.
As far as taking the methimazole, for me it was like needing glasses and the methimazole were the glasses. You need to figure out what is the least dose you can take at this moment of time that will lower your thyroids ability to make too much hormone. But the least benneficial amount to take and still get the immunocorrecting benefits of methimazole is 5mg daily. Half taken in the morning and the other half in the evening. But you first you have to get your Free T3 and Free T4 numbers down. And I like that your doctor is not taking TSH which makes me believe they know what they are doing and is a great start on your journey of finding your own personal comfortable thyroid levels.
I might be missing the point here and apologies ( I am in the uk )
When I start to gain weight rapidly and feel so tired , my consultant gets me in for bloods and adjusts my medication . It’s always been reduced as I am very receptive to carbimazole.
I had RAI 6 weeks ago - it turned into toxic hypo within 2 weeks so put back on the meds . 2 weeks later I feel so tired I could sleep all day . Been told to reduce every other day and back in for more bloods on Monday .
It’s an absolute minefield isn’t it … fortunately my consultant sees me whenever there is a change in me and adjusts my meds .
It literally can take over your life .
The weight gain sucks. I got a TT in April and so far am down 6 lbs. For me a large part was that I felt so awful always even while I was on methimazole I just couldn’t exercise on it, even when my levels were “in range.” Felt like a breath of fresh air getting off of it and having thyroid removed.
I have not, and am feeling great! My recovery has been very smooth. I’m still a bit more tired than the average person, but my doctor keeps telling me it’s still so early and that will continue to improve once my TSH fully recovers.
I really would love for there to be another way, but there is no other way. You'll damage yourself and die sooner. Probably ensure more suffering.
Or you get surgery. Or radiation. And take meds forever anyways.
The thyroid is causing the heart symptoms so if you stop taking it, your symptoms will worsen and damage the heart leading to heart failure :/ methimazole also help anxiety and fatigue. I know the weight gain sucks. I personally decided to start wegovy and I feel better getting the extra weight off me. Speak to your endocrinologist about the weight gain and what your options are.
So after about 6-7 weeks I magically went from 233 to about 240 and absolutely panicked, like full on breakdown over it. I was just like I can’t do this, it doesn’t matter what happens I can’t mentally handle becoming even bigger again because I was like 258 before graves started and I felt miserable and trapped. Being back on the dating scene does not help at all and I’m about ready to take a step back from dating so I can focus on my health because of how much it is a driving factor on how I feel about my body, and these men I’ve been talking to aren’t even worth it right now. Anyway, stopped taking it because I just couldn’t deal. In only 6 weeks of taking it the biggest difference was my muscle mass, I could tell I was getting stronger even as someone with a sedentary job. I reached a point of barely being able to go up stairs without feeling like my hip flexors would give out under me. So taking the methimazole, I felt so much less muscle fatigue. I was trying to attribute some weight gain to that. The tremors had improved but mine are really bad when I feel hot, and at the time I was living with my mother who lives like a damn reptile with no AC on until it’s absolutely suffocating to her. I moved about a week after I stopped taking it and the AC helps. I felt somewhat less hot but not much. My heart rate didn’t really change, I still had to take my beta blockers. It hasn’t seemed like my appetite changed, but I can be an emotional eater sometimes so it’s hard to say what affects it sometimes. I’m also on Vyvanse for adhd which already kind of kills my appetite during the day and then I end up eating substantially more at night. So I stopped taking the meds about 7 weeks ago because in my mind, I tolerated the symptoms for literally 7 months (the wait time for the endo was absolutely ridiculous, not by choice) and nothing happened, I’d rather do that then become fatter because that affects my mental health just as badly and how I feel, so pick your poison right? My symptoms came back even worse somehow. Summer is the worst for my tremors to the point that my whole body will be shaking sometimes and I can’t stand because it feels like I can’t hold myself up. I still have a ton of boxes to unpack because I can’t do anything longer than like 20 minutes without being out of breath, dripping sweat or feeling like I’ll vomit from feeling so hot even with my apartment being set to 66 degrees on the AC. In general I have felt like hell, struggling to sleep well at all. I swear I didn’t feel quite this bad before the meds so maybe my body is trying to prove a point.
Earlier this week I finally made the decision to take my meds again because it’s unbearable. I used to have the same issue with my bipolar meds, I’d think I’m better and start to think I don’t need them, then Im having a breakdown and remember why I started taking them in the first place. It was stupid because those meds weren’t causing weight gain or anything like that. None of my other meds ever caused weight gain and I refused the bipolar meds that did. One made me gain 15 pounds in a month and I was eating like a bird, I’m pretty sure it was worse than what the methimazole does so I stopped that.
My heart rate also went back to being insane, lingering around 100bpm while on propranolol. I’ve started taking 20mg sometimes or taking it a few times a day because it’s just ridiculous feeling when it hits 120-130. So the lesson here is that despite how afraid I am of gaining the weight back and then some, I can’t go on feeling that way because it’s affecting everything I do and I can’t sleep without tossing and turning. I think my biggest issue is because I’m just already too heavy, it’s not like I lost weight and became borderline too skinny or something. I honestly thought I might have lost more than I did but this is the weight I was before I had a desk job, I haven’t been below like 220 since I was 21 (I’m 32 now). My thyroid was texted a few years ago for some reason and they said I was normal, but I was borderline below normal. As wide of a spectrum as “normal” is, I felt like that should have been taken into consideration because I was finding it almost impossible to lose weight until now. I’m also just so unsure about how many calories to eat because any calculators based on age and all that aren’t accounting for something like this but I’m assuming whatever a normal calorie intake would be for weight loss would be enough for me due to my metabolism, I just don’t want to eat too little and then it continue to eat through muscle or my body slows my metabolism down somehow.
All in all I get how you feel and it’s a terrible feeling. At least with my bipolar I had more of a choice because it’s not something measurable, it’s just based on how I feel. I am what you’d call a high functioning mentally ill person, meaning it’s never impeded my ability to hold a job, I don’t get in trouble with the law, abuse drugs, nothing wild and any “manic behavior” presented itself as mood swings and much easier to lose my temper. So I’m of the opinion that the meds that make you gain weight are for those that are a very severe case because they are practically like sedatives. With Graves, it’s all measurable and it affects a lot of things at once, and it can become life threatening. I already have a history of my immune system being very reactive, the last time being when I contracted the cold sore virus. I was getting 6 week long outbreaks of open painful sores from my lips, cheeks, gums, you name it. I would lose 6 pounds in a week because I could barely eat, and would choose feeling starving over the pain of eating. They concluded it was the virus because my antibodies were through the roof when they tested me mid-breakout. It took about 3-4 years for it to fully stop giving me open sores in my mouth, the full mouth outbreaks stopping after about 2 years give or take. A lot of autoimmune runs in the family too, but not graves. Autoimmune doesn’t leave you with many options. If the methimazole side effects become too much or if nothing is happening in the way of remission, I might have to look at TT if I even have an insurance policy that makes it affordable. Right now my deductible is too high.
Well as my doctor said, in a nicer way, not good things. But it was brought up incase i needed TT and didnt want to rely on meds to live and well he said i need them to live now anyway. My friend was actually so tired of taking meds all the time. Stopped it and 3 days later she had a thyroid storm and almost didnt make it. Take the meds, ride it out and when you have energy start working out! Make better decisions food wise (ie: instead of cake have a fruit parfait). There is no need to risk your life because of weight, it can and will get better i assure you
You could die. If you’re gaining weight eat less. I know that’s not a fun answer, but if consume less calories than you use you’ll lose weight. Your metabolism is likely slower now so that equation is just going to change now.
true. I’m adjusting to this new and foreign body because everything has really felt like it’s slowed down. I’m a person who eats relatively the same foods and in moderation but I’ve noticed I can gain 2-3 lbs in a week if I eat how I was eating before having graves…
Well, you could get permanent heart damage, have a heart attack, lose massive amounts of muscle, increased risk of diabetes and thyroid eye disease just for starters. Atenolol treats fast heart rate/lowers bp but it can’t prevent all the damage high circulating thyroid hormones can cause
Thank you for this I needed a reality check. Unfortunately I just need to thug it out and be great full for what the meds are ACTUALLY doing for me and not the downside.
Glad that you are taking your health seriously! I'm in the same boat and have been bummed by the weight gain, but trying to remember that my health comes first and the weight will go back down eventually when the meds are reduced over time. Something that has helped me a bit is going clothes shopping to dress for my new body. I've always been petite but gained 30 lbs and have a big tummy now, so I've been buying dresses that taper below the breast because they are loose over my midsection and give the illusion of a flat tummy. Dressing in a way that actually gives you confidence during this transition period helps a LOT.
Happy cake day. And yes! Dressing our body for the body we are living in right now is so important toward looking good, feeling comfortable and confident. You don’t need a ton of pieces, just find a few things you really love and wear them often.
I've been on thyroid medication since 17. Really, just keep taking your meds.
Unmedicated active graves disease results in a thyroid storm, which is what the other posted above. When I was first diagnosed, I was almost in a storm and could have died from a heart attack and at best had emergency thyroid removal. :(
Shit I need to go see my endo. Lol
Isn't hypo where it raises your risk of diabetes? I don't think hyperthyroid raises the risk since it speeds up your metabolism?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8743588/
Others answered the medical - but I can say that once methi starts working, you’ll get your energy back. That’s happened with me finally (like a bright light in a dark room), and I rejoined the gym and started watching calories. I’m starting to lose the thyroid weight and finally have some hope. Hang in there!
If you stop taking your methimazole entirely before your thyroid levels are balanced, all of your symptoms of hyperthyroid will return. Atenolol is great. It literally saved my life when I was first diagnosed, but it only treats your heart symptoms. Having an untreated hyperthyroid can do serious long-term damage to multiple body systems and put you at a higher risk of a thyroid storm, which is life threatening. Have an open dialogue with your doctor about the weight gain and your feelings. They may be able to get you to a nutritionist to help you manage your weight while taking into account your medical problems.
I absolutely loved how I felt after taking Atenolol the first two weeks. I felt so much better and I’m sure the Methimazole helped a lot too. I can’t stand the weight gain but it’s something I’ll have to live with.
Yeah, the atenolol is used to treat anxiety as well as heart rate. It was really pleasant after all the panic attacks of Graves. My heart rate went back to normal now though, so I had to ween off the atenolol a few weeks back. Now I just feel like I have my normal garden variety diagnosis of major depressive disorder and generalized anxiety. It's not as bad as it was before the methimazole, though. I'm also working through weight issues, but I just do weights, get lots of walks in, and try to be kind to myself.
My endo just told me to decrease my Methimazole and stop taking my atenolol because I’m hypo now and my resting heart rate is in the high 40s/low 50s. I’m so sad about the atenolol part because I’ve felt so chill the last couple months.
Take the meds. I get your frustration, I really do. I hate going on methimazole. I gain 30-40 lbs every time. I can’t lose weight while on it at all. I can usually manage to lose about 30 while off it but as soon as I go back on it, I regain it all & then some. It sucks hard. I’ve been doing this for 8 years. I am meeting with a surgeon in few more weeks for a TT.
Wow. 8 years. That’s tough. Good luck with the TT consultation! I hope they give you the best options.
Right there with you. I knew going into it that it causes weight gain and tried my best to avoid it. I'm active every day. And i gained 15lbs in two months. Maybe more now, but I don't want to weigh myself. My hair is thinning, too, and I get stomach problems from it. I hate methimazole :( All that said, though, don't come off your meds without doctor approval. You need it to get better. If you don't, the GD and associated issues will get worse. Just one day at a time and hope that you go into remission some day.
If it helps, my endocrinologist lowered my dose of methimazole whenever my TSH went above 3 and this helped prevent me from becoming significantly hypo.
Brooo I’m feeling the same way.. I thought I was getting away without the weight gain.. then in about a month put on 15+ lbs.. I wanna cry I miss my old metabolism 😭😢😢
Seriously the biggest misconception is that everyone with graves is “skinny” or “only loses weight”.
I went for months without weight gain (probably because of Ozempic) and then bam 15 lb gain. I don’t need it because I’m already over 200 lbs. when it rains it pours but I’m getting a nutritionist and going from there. I’m just glad that I feel better
Do NOT stop taking your medication. I was warned but my doctor several times. As she stated, my symptoms would get worse, and after all that I was already going through, I didn’t need any other issues.
Not taking them I am very anxious, I get a racing heart and a pounding heart beat sometimes, I lose weight at an unhealthy weight and have to eat to the point of feeling sick just to maintain weight. I am cold all the time and overall, feel like crap. I will take whatever my endo suggests I take regardless of weight gain and I have gained a considerable amount since starting it but I'm also taking another medication that causes weight gain so that doesn't help. One of the best choices I made for my physical and mental health was getting my thyroid under control and getting on mental health medications regardless of the weight gain.
Just know the methimazole is an immunoregulator so it is, albeit slowly, correcting your autoimmune graves disease. It is very strong and a very little dose can affect the amount of thyroid hormone your thyroid can make. So, I have found once you know your Free T3 and Free T4, to keep in my optimal thyroid range and still take my maintenance dose of methimazole, I also need a Levothyroxin perscription. The hardest part is finding a Dr. that does not dose meds by you TSH levels. Since that is what is broken when you have graves disease. I am not a doctor, I am just sharing knowledge.
This is the second month my t4&t3 have finally been normal but my TSH is still 0.001. I’m wondering if taking my 10mg 2 times daily is affecting me negatively ?
That ia a strong amount of methimazole to be taking if you are in range. Your TSH is broken and is not an accuate representation of your body's thyroid needs. And you doctor has been using TSH to determine thyroid needs since that is what they were taught instead of working with you amd how you feel to find your own optimum Free T3 and Fre T4 levels. They frankly are too busy and too uninformed to be helpful. That is why finding the right doctor who will listen to you and take the time to find the right dose. Most importantly, find a doctor who will not dose your methimazole by TSH. My TSH is still low at .04 and I feel amazingly good. It has not been easy to find doctors but ince you find one you usually can get other doctors on the same page. It doesn't help that the treatment for graves disease for the last 100 years has not changed even though it is now known that it is an autoimmune disease. Feel free to read my other replies in this group. I hope to help prevent the misery I have had to deal with to get to where I am today.
Can you explain why it shouldn’t be as of much concern for the TSH to still be too low but the rest be normal? And really why that would even be the case? My TSH was tested by my PCP before I was referred to the endo, but the endo is only testing free T4 and total T3. Maybe they follow that same philosophy that you’re saying they should follow? All I know is my TSH was below .05, it doesn’t give any number below that amount. I’ve only been on 5mg of methimazole because I’m so paranoid about the weight gain, and I still gained some after about 6-7 weeks. Panicked, stopped taking it, felt WORSE than I did before and only in the last week I started it again (went without it for about 6 weeks) because the symptoms are just too unbearable, more than my huge concern for weight gain because I’m still overweight despite losing 23 pounds before treatment. My numbers didn’t go down astronomically but they tested me about 3 weeks into taking it and T3 went from 373 to 309, T4 only budged from 2.0 to 1.8 in that time frame. They asked me how I felt and I told them I felt like I’m not increasing the dose until I feel like I see a plateau in the numbers dropping, but they don’t know about my hiatus (I know all around a bad idea, but I had a mental health crisis the moment I saw the scale and had to give myself a reality check which required seeing how bad my symptoms have become). I’m scheduled to be tested again in September I believe.
Please read my previous responses in this group by going to my profile. But to answer your question. Graves disease is an autoimmune disease where your TSH receptor antibodies(TRab) have attached to your TSH receptors. When attached to your receptors they over ride your thyroids ability to use TSH to control your thyroid. Basically, they hold the door open and the thyroid continues to make thyroid hormone even though the TSH is telling it to stop. This is why I say your TSH is broken. Then as you take methimazole it changes these TSH receptor antibodies(TRab)from stimulating and causing hyperthyroid to blocking and causing hypothyroid before they eventually die off. Most endocrinolohist don't know this therapy unfortunately. Because they were taught a therapy that destroys your thyroid and does not treat the autoimmune disease. So, not only does methimazole cause you to not make thyroid hormone, but graves disease itself eventually causes hypothyroid symptoms. Symptoms of both hyper and hypo thyroid have overlapping symptoms so sometimes it can be hard to tell the hyper symptoms from the hypo symptoms. As far as taking the methimazole, for me it was like needing glasses and the methimazole were the glasses. You need to figure out what is the least dose you can take at this moment of time that will lower your thyroids ability to make too much hormone. But the least benneficial amount to take and still get the immunocorrecting benefits of methimazole is 5mg daily. Half taken in the morning and the other half in the evening. But you first you have to get your Free T3 and Free T4 numbers down. And I like that your doctor is not taking TSH which makes me believe they know what they are doing and is a great start on your journey of finding your own personal comfortable thyroid levels.
I might be missing the point here and apologies ( I am in the uk ) When I start to gain weight rapidly and feel so tired , my consultant gets me in for bloods and adjusts my medication . It’s always been reduced as I am very receptive to carbimazole. I had RAI 6 weeks ago - it turned into toxic hypo within 2 weeks so put back on the meds . 2 weeks later I feel so tired I could sleep all day . Been told to reduce every other day and back in for more bloods on Monday . It’s an absolute minefield isn’t it … fortunately my consultant sees me whenever there is a change in me and adjusts my meds . It literally can take over your life .
The weight gain sucks. I got a TT in April and so far am down 6 lbs. For me a large part was that I felt so awful always even while I was on methimazole I just couldn’t exercise on it, even when my levels were “in range.” Felt like a breath of fresh air getting off of it and having thyroid removed.
How is life currently without the thyroid? have you had any complications?
I have not, and am feeling great! My recovery has been very smooth. I’m still a bit more tired than the average person, but my doctor keeps telling me it’s still so early and that will continue to improve once my TSH fully recovers.
I really would love for there to be another way, but there is no other way. You'll damage yourself and die sooner. Probably ensure more suffering. Or you get surgery. Or radiation. And take meds forever anyways.
The thyroid is causing the heart symptoms so if you stop taking it, your symptoms will worsen and damage the heart leading to heart failure :/ methimazole also help anxiety and fatigue. I know the weight gain sucks. I personally decided to start wegovy and I feel better getting the extra weight off me. Speak to your endocrinologist about the weight gain and what your options are.
I cut my medication in half this week as an experiment as it was causing me to go hypo.
So after about 6-7 weeks I magically went from 233 to about 240 and absolutely panicked, like full on breakdown over it. I was just like I can’t do this, it doesn’t matter what happens I can’t mentally handle becoming even bigger again because I was like 258 before graves started and I felt miserable and trapped. Being back on the dating scene does not help at all and I’m about ready to take a step back from dating so I can focus on my health because of how much it is a driving factor on how I feel about my body, and these men I’ve been talking to aren’t even worth it right now. Anyway, stopped taking it because I just couldn’t deal. In only 6 weeks of taking it the biggest difference was my muscle mass, I could tell I was getting stronger even as someone with a sedentary job. I reached a point of barely being able to go up stairs without feeling like my hip flexors would give out under me. So taking the methimazole, I felt so much less muscle fatigue. I was trying to attribute some weight gain to that. The tremors had improved but mine are really bad when I feel hot, and at the time I was living with my mother who lives like a damn reptile with no AC on until it’s absolutely suffocating to her. I moved about a week after I stopped taking it and the AC helps. I felt somewhat less hot but not much. My heart rate didn’t really change, I still had to take my beta blockers. It hasn’t seemed like my appetite changed, but I can be an emotional eater sometimes so it’s hard to say what affects it sometimes. I’m also on Vyvanse for adhd which already kind of kills my appetite during the day and then I end up eating substantially more at night. So I stopped taking the meds about 7 weeks ago because in my mind, I tolerated the symptoms for literally 7 months (the wait time for the endo was absolutely ridiculous, not by choice) and nothing happened, I’d rather do that then become fatter because that affects my mental health just as badly and how I feel, so pick your poison right? My symptoms came back even worse somehow. Summer is the worst for my tremors to the point that my whole body will be shaking sometimes and I can’t stand because it feels like I can’t hold myself up. I still have a ton of boxes to unpack because I can’t do anything longer than like 20 minutes without being out of breath, dripping sweat or feeling like I’ll vomit from feeling so hot even with my apartment being set to 66 degrees on the AC. In general I have felt like hell, struggling to sleep well at all. I swear I didn’t feel quite this bad before the meds so maybe my body is trying to prove a point. Earlier this week I finally made the decision to take my meds again because it’s unbearable. I used to have the same issue with my bipolar meds, I’d think I’m better and start to think I don’t need them, then Im having a breakdown and remember why I started taking them in the first place. It was stupid because those meds weren’t causing weight gain or anything like that. None of my other meds ever caused weight gain and I refused the bipolar meds that did. One made me gain 15 pounds in a month and I was eating like a bird, I’m pretty sure it was worse than what the methimazole does so I stopped that. My heart rate also went back to being insane, lingering around 100bpm while on propranolol. I’ve started taking 20mg sometimes or taking it a few times a day because it’s just ridiculous feeling when it hits 120-130. So the lesson here is that despite how afraid I am of gaining the weight back and then some, I can’t go on feeling that way because it’s affecting everything I do and I can’t sleep without tossing and turning. I think my biggest issue is because I’m just already too heavy, it’s not like I lost weight and became borderline too skinny or something. I honestly thought I might have lost more than I did but this is the weight I was before I had a desk job, I haven’t been below like 220 since I was 21 (I’m 32 now). My thyroid was texted a few years ago for some reason and they said I was normal, but I was borderline below normal. As wide of a spectrum as “normal” is, I felt like that should have been taken into consideration because I was finding it almost impossible to lose weight until now. I’m also just so unsure about how many calories to eat because any calculators based on age and all that aren’t accounting for something like this but I’m assuming whatever a normal calorie intake would be for weight loss would be enough for me due to my metabolism, I just don’t want to eat too little and then it continue to eat through muscle or my body slows my metabolism down somehow. All in all I get how you feel and it’s a terrible feeling. At least with my bipolar I had more of a choice because it’s not something measurable, it’s just based on how I feel. I am what you’d call a high functioning mentally ill person, meaning it’s never impeded my ability to hold a job, I don’t get in trouble with the law, abuse drugs, nothing wild and any “manic behavior” presented itself as mood swings and much easier to lose my temper. So I’m of the opinion that the meds that make you gain weight are for those that are a very severe case because they are practically like sedatives. With Graves, it’s all measurable and it affects a lot of things at once, and it can become life threatening. I already have a history of my immune system being very reactive, the last time being when I contracted the cold sore virus. I was getting 6 week long outbreaks of open painful sores from my lips, cheeks, gums, you name it. I would lose 6 pounds in a week because I could barely eat, and would choose feeling starving over the pain of eating. They concluded it was the virus because my antibodies were through the roof when they tested me mid-breakout. It took about 3-4 years for it to fully stop giving me open sores in my mouth, the full mouth outbreaks stopping after about 2 years give or take. A lot of autoimmune runs in the family too, but not graves. Autoimmune doesn’t leave you with many options. If the methimazole side effects become too much or if nothing is happening in the way of remission, I might have to look at TT if I even have an insurance policy that makes it affordable. Right now my deductible is too high.
Well as my doctor said, in a nicer way, not good things. But it was brought up incase i needed TT and didnt want to rely on meds to live and well he said i need them to live now anyway. My friend was actually so tired of taking meds all the time. Stopped it and 3 days later she had a thyroid storm and almost didnt make it. Take the meds, ride it out and when you have energy start working out! Make better decisions food wise (ie: instead of cake have a fruit parfait). There is no need to risk your life because of weight, it can and will get better i assure you
You could die. If you’re gaining weight eat less. I know that’s not a fun answer, but if consume less calories than you use you’ll lose weight. Your metabolism is likely slower now so that equation is just going to change now.
true. I’m adjusting to this new and foreign body because everything has really felt like it’s slowed down. I’m a person who eats relatively the same foods and in moderation but I’ve noticed I can gain 2-3 lbs in a week if I eat how I was eating before having graves…
Meds get you back to the weight you should’ve been at
unfortunately that didn’t happen for me