I’m not a doctor, but I feel like surgery is never the first option when it comes to resolving health issues. Depending on the person it could be the answer, but I feel like removing a vital organ is not the go to option unless necessary. Even with the surgery you will have to take pills the rest of your life. If your meds aren’t working and you are still having graves symptoms it could be for you, but if well managed by medication, there’s no need to do such an invasive surgery.
Yeah I gotcha. I'm probably in desperation mode to just feel better. I want to enjoy food, travel and time with family but with this I feel miserable to the point that I become way to desperate for a "fix".
Yes, I did, but I think a lot of it was the letdown of my heart getting back to normal. When you're used to the equivalent of 5 cups of coffee going through your endocrine system at all times, you feel like you're moving through molasses when it starts getting under control.
Yeah I'm a blue collar worker and each day for the past year I was drinking 4-5 Celsius or red bulls. I literally went cold turkey(worst withdrawals of my life) when I was feeling weird and did blood work to find out I might have hyperthyroidism. With the beta blockers idk if I'm overthinking it, I feel like it's not working and I get anxiety that overcomes the effect of the pill. Guessing it's weak..idk what it actually feels like.
This is going to sound completely random, but have you ever resonated with any symptoms of ADHD? That level of caffeine a day screams "self medicating to function" and maybe it's thyroid related, but it might be worth going down a Google rabbit hole if needing that much caffeine isn't new for you. Disclaimer that I'm not a doctor, I just have a lot of neurodiverse friends who were often having an untenable amount of coffee or energy drinks before diagnosis.
Anxiety is extremely common with Graves. I was so paranoid I was convinced I or my husband would die at any moment. It probably took about 4 months for that to completely calm down. The heart rate got back to normal within 2 weeks on beta blockers. They helped with anxiety, but didn't erase it immediately because I was so amped from being hyperthyroid for so long. It wove a pattern of fear and stress into my brain that it took a fair bit of time to unravel.
Hang in there, I promise this is the hardest part. 6 months from now you'll wake up and this week will feel like a bad dream.
Oh wow good catch! I was diagnosed with ADHD at 3 yo!. Got out of meds in high school( father said ADHD wasn't real). Been doing ok for the past 15 years no meds, just trying to take my time on some things.
i drove to the hospital 5 times and sat at their parking lot thinking I was having a heart attack. Told myself it was a panic attack and went home. My MIL is a therapist and really helped me with my breathing and mental anxiety, but now it's worse than before.
My dad had the disease back in 92' and they did the removal with radioactive iodine. He ballooned up to 550lbs cause I guess he wasn't taking his meds. I'm gonna try and beat this and not be like that
Well hopefully everyone with this disease gets better!
That’s a low starting dose of methimazole imo. Maybe ask your doc to increase it? I started on 20mgs and within two weeks my tremors had gone away and I no longer had to take propranolol. 2 weeks after that my blood work came back with T4 looking great so now I am on 10mgs of methimazole and it will be lowered again if my next 4 week blood check looks good
definitely something to talk to your endocrinologist about. Surgery isn’t a decision to make lightly. And it comes with its own risks and complications.
Surgery is my first/best option bc I’m breastfeeding and will try to get pregnant again soon (I’m 37 so times a ticking). All this to say, surgery seems like the best/first option for me. I’m choosing not to take MM bc it kinda seems miserable and potentially poisons your liver, not to mention what it would do to a pregnancy. I’m an all or nothing person too, so removing it really appeals to me.
If it feels like it’s the best option for you OP, you’re not alone!
Yup, my wife is a IBCLC and RD, and she said that graves caustes a lot of low milk supply. Pretty much 70% of her patients have some sort of thyroid issues. Hopefully everything works out for you!
The actual relapse rate is actually closer to 50%, which is still a lot, sure, but a lot of people want to give that a shot first before making permanent decisions. That being said, removing your thyroid may be the right choice for many people who want to get it over with and don't want to try and see if they go into remission.
The negatives I've read about are that you'll need to stay on meds for life, but if that's not a big deal to you, that's great. There's also some risk to your parathyroid and laryngeal nerve so you can have your voice damaged or have trouble swallowing after. That goes away for most people, but a lot of patients and doctors think surgery should be considered carefully because it does come with some risks.
There's pros and cons to all the options we have, so definitely ask your doctors what they think is best for you, and make sure you have someone that listens to you and respects your wishes! It's not a one size fits all but I've heard a lot of people were happy with their thyroidectomy.
This is an awesome input , thank you 🙏🏾🙏🏾🙏🏾 I will see what the doctors say after my uptake. Just been feeling so miserable, especially working in the trades and having young kids and now this hits me. I shall do more research and ask more questions.
Totally fine to just have it removed and not have to worry about potential future drama. My endocrinologist only offered RAI, no TT surgery, and the methimazole was working great so I was happy. Currently in remission after about 4 years on methimazole.
It took me about 3 months on 10mg/day methimazole to feel normal when I first was medicated.
This is just how it is. Graves is a lifelong condition. It takes a few months to get your meds right and feeling better-
Years to remission. You feel much better wayyy early than that, usually only after a month or so of meds. Your body has a lot of hormones to dump, the lifespan of them is very long. Remission is not just feeling better. Whether you have TT or stay on Methimazole, you will be taking medicine for life. TT just helps you stay leveled and removes the possibility of thyroid storm.
Stay strong! My advice is to hang in, it does get better and manageable. You are just getting through the worst of it and recovering from how bad it got. The methimazole has worked great for me and im almost 2 years in with normalized levels now and I feel fine aside from my TED. I do get anxiety and heat intolerance, but that's just par for the course. Surgery may be for you some day, but you've only just begun. I think it's worth letting the methimazole do its thing, and let them lower your dose after a while.
Thanks for the solid advice and sharing your own battle with it. It's reassuring to hear methimazole worked out for you and gives me a bit more confidence moving forward. Also appreciate the heads up 🙏🏾
It depends on how severe your condition/symptoms are. For me RAI or TT were really the only options. I lost fully 2 years of my life to brain fog. I only recently found out that remission was a thing that is possible to happen. It makes sense that, wherever possible, doctors would encourage a treatment plan that doesn't involve permanent damage or removal of an organ.
That being said, a lot of people (doctors and laymen alike) act like "permanent solutions" are terrifying be-all end-alls when they're not. I have been told I should have waited for a cure or to see if I would enter remission (again, this was not remotely an option for me based on severity). People are scared of what they deem permanent damage. It's a fear of disability tbh (even though I am much less disabled now that my thyroid is a shriveled husk than I was when it was a functioning organ). I made the choice to get RAI after my second thyroid storm in as many months. If you want to just get rid of it and get it over with it's your body and your choice. I, for one, have no regrets.
My endo and I have been trying to find a dosage of methimazole that works for me (lmao none so far, it's either too much or too little and I'm very sensitive to the medicine) for about a year.
We decided that RAI is not a good idea because of my TED and too many pets; so in one more year, if the medicine doesn't do its job, we're gonna do a TT. This way she doesn't have to fight so much with insurance.
I'm also totally fine with "meds forever" if I can maybe not feel this way all the time.
Not necessarily - some folks go into remission! There's always a hope for that!
My game plan with my endo is specifically for me, everyone is different. The methimazole messes with my liver so I can't be on it forever. Who knows, maybe I go into remission within the time frame. Bodies are weird!
Have just decided to remove mine after almost of a year on meds. I can get my t4 in range but the TSH is way off and I want to have a baby. This is the fastest solution to getting my body in a place to conceive since I'm mid 30s and don't have a whole bunch of time left. I'm scared but I think it's the best decision in the long run.
Yup I'm thinking that's the best route instead of waiting more years like some people and having the possibility of relapse. Also post-partum would be crazy on top of having graves. Hope anything you decide to do goes in your favor 🙏🏾
Because doctors tell you that it will go away once in remission - which is not really true. (People think they just have to hold on for 8 months and then it’s done.) Lifelong medication just seems really unattractive but it’s better to substitute a hormone then have liver damage from taking carbimazol/ptu way too long. Some people here rather have graves and take that medication then remove it. I don’t understand that.
That's how I feel, but I'm new to all this. My father had it in the 90's, people told him to wait it out there might be a cure.. he removed it. There hasn't been a cure in 30 years.
I still have my thyroid. Surgery was never on the table for me. I did 4 years of treatment ad I'm now in remission. Graves comes with a huge variety of symptoms and getting acquainted with that will help you figure out what's normal and what isn't. You may need a change of medication so speak to your specialist, tell them exactly what issues you're having, and see if they can help.
One thing I did was get allergy/intolerance tested so food now is easier for me. I also stay away from iodised salt and seaweed. It becomes very much a new normal. Old me is old me. It's now been 7 years since my diagnosis and once new eating habits are formed it gets easier. I read everything I could find on Graves, stay away from forums and look for proper websites, and learned about the disease. The more you know the less afraid you'll be.
I'm not anxious about relapse at all. I know the signs and when things need looking at I do it ASAP. Heart starts to flutter? Get bloods done and request an ecg is needed.
I was given the choice in 2015 when I was a senior in high school after 2 years of battling with medicine. I was told radioactive iodine or surgery. It's a big decision to make and from my perspective it may not have been the best. I recently had to go a week with no medication and no thyroid because my doctor wasn't available and I just got my refill today, but it could have been so awful if I had to wait much longer. So there is a lot to consider if it comes to this decision. But also thyroid cancer is in both sides of my family so I said just cut it out I'm tired of fighting an organ. Hindsight is always 20/20
Diet, I've started Weight Watchers about a year ago. It has helped me focus on eating healthy and helped me loose 30lbs. Stress, I'm a teacher so it can't be avoided, but I try to schedule myself to give me down time each day. I try to plan ahead my days and my schedule to avoid stress. So at work when I leave on Friday, I have the following weeks lessons planned out, prepped and copied.
I understand your sentiments. I’m getting mine removed in a month. The moment the doctor told me I almost knew I had to get it removed. I saw my grandmother suffer with breast cancer multiple times in my life bc she wanted to keep her breast. I want to know that this illness won’t come back regardless of what body part i have to lose. I want to experience the joys of life again and potentially have kids. Radiation isn’t a guarantee.
From reading, I found out most endocrinologists and surgeons only like to do thyroidectomies once you’re euthyroid - the methimazole has gotten labwork back to normal. Pretty much as soon as I was, I asked for a TT. My family wants to do some nomadic traveling stuff - going super hyper is not safe and could be downright deadly in some locales. He agreed and referred me, I got it done about a month ago. Still nailing down the right replacement thyroid med dose but I’m glad I did it. I feel like it will be a more stable future than on and off methimazole
None whatsoever. Either way, we’re dealing with a lifelong autoimmune disease, I like knowing I’m on a relatively even plain (plane?) with replacement thyroid medication & no big, out-of-the-blue symptom swings.
Not yet! It can take a little while to get the right dose of levothyroxin. Right after surgery, I was a bit under medicated so we just upped my dose a little. I’ve been very tired. I have hopes, but even if I never feel 100% ever again, I at least know I’ll never feel as terrible as full blown hyperthyroid ever again!
Would be an easier decision if just removing it actually cured the patient, like removing a gall bladder. However, removing the thyroid is not a cure. You are swapping one set of issues for another, albeit less life threatening, set of other issues. And removing still requires a lifetime of medication/treatment. Not to mention the risks of the surgery itself.
I got mine completely removed in august of 2022. I was 100 pounds, really sick. Ended up being allergic to medication to treat it. Suffered through it for awhile, was on PTU which was a threat to my liver. Got stable enough to get pregnant, pregnancy sent me into remission. A few months after I had my daughter I got it removed and I’ve been on levothyroxine ever since.
Thanks! Personally, I think it was worth it for me. I had a harder time trying to take meds I was allergic to. I am struggling with trying to lose weight since having it removed but I have no side effects from the levothyroxine and my surgery went smoothly
As someone who was unable to go into remission, keep your thyroid if you can. The constant juggling act for not only my thyroid levels but also vitamin D and calcium/ phosphate is a pain in the ass. My type 1 diabetes is easier.
The calcium phosphate issue is from the thyroid surgery. Don't get me wrong, I needed it any wounds make the same decision again, but it's a pain in the ass to manage now, just slightly less debilitating. The difference is, diabetes I can monitor at home, I can treat and manage at home, and I have appropriate hormone therapy for it. Thyroid replacement is difficult to get stable but easy once it is, but damage to the parathyroid is much harder - that's the complication I have. It's taken me 15 years to stabilise it.
I had 1st surgery to remove half my thyroid - 0 complications, life was great.
I relapsed 10yrs later & opted to have the rest removed.
After 2nd surgery, my calcium glands (parathyroids) went into shock. It's a known complication.
I'm on 8 calcium tablets a day.
I also now have "autoimmune gastritis" - bloating, constipation, sometimes diarrhoea.
Not sure if that's caused by my Graves, or all the medication I'm taking.
Less seriously,, it's taken 2yrs to get my Eltroxin dose to a good level - so I've gained weight and feel tired all the time
That's crazy..I'm so sorry you had to go through that .. that feeling of relapse AFTER 10 YEARS!! must've been defeating. I will definitely research everything you went through. Hope you're feeling better. Did they say it might get better?
Awh thank you.
Endo says the calcium issue resolves for most people within 6-12months... since its been 2yrs for me, so I'll be on calcium for the rest of my life.
The gut issues - I've no idea. Even 2 yrs later the docs seem to be guessing alot. My next step is gut biome testing
It’s a reasonable option if that’s what you decide to do - you will probably just need to try to get more normal levels on meds first. I had mine removed three months after diagnosis after careful research then advocating for what felt like (and still does two years later) the best decision for me. All of my graves/thyroid related symptoms were gone by about 6 weeks post surgery. I was lucky I had no complications from surgery and got on a stable dose of Levothyroxine quickly.
I did gain weight, but only what I lost w my acute graves (I lost about 25 lbs pretty rapidly, much of it muscle mass). I have regained muscle mass, can exercise vigorously again. So much healthier now. Weight is stable.
How long have you been treating your Graves?
I’m about 6 months in with Graves and started at 30mg of methimazole (my bloodwork was off the charts bad) and started feeling better about 4 weeks in. My doc and I have discussed therapy but I wanted to give a full year trying the non surgical route as it is a major surgery with plenty of risks and long term lifestyle implications. I’m now down to 15mg methimazole and since I’m responding well to the meds and have virtually no side effects I see no reason to pursue surgery.
If you remove your thyroid, you're guaranteed to be on meds the rest of your life. If you don't remove it, there's a chance you could taper off eventually. Obviously, there are a lot of factors that go into, and it's definitely a decision that should be made with your doctor.
I’m not a doctor, but I feel like surgery is never the first option when it comes to resolving health issues. Depending on the person it could be the answer, but I feel like removing a vital organ is not the go to option unless necessary. Even with the surgery you will have to take pills the rest of your life. If your meds aren’t working and you are still having graves symptoms it could be for you, but if well managed by medication, there’s no need to do such an invasive surgery.
Yeah I gotcha. I'm probably in desperation mode to just feel better. I want to enjoy food, travel and time with family but with this I feel miserable to the point that I become way to desperate for a "fix".
Did they prescribe you a beta blocker at all? That helped a ton with the heart rate and anxiety issues!
Methimazole 5mg and propranolol at 10mg 2x daily. It's ok, but I get anxious and I feel tired every time
Tell your doctor! It might not be a high enough dose of the meds if that much propanol isn't helping get rid of the heart attack feeling.
Yeah I messaged him today, but no response yet. Do you get drowsy from taking beta blockers?
Yes, I did, but I think a lot of it was the letdown of my heart getting back to normal. When you're used to the equivalent of 5 cups of coffee going through your endocrine system at all times, you feel like you're moving through molasses when it starts getting under control.
Yeah I'm a blue collar worker and each day for the past year I was drinking 4-5 Celsius or red bulls. I literally went cold turkey(worst withdrawals of my life) when I was feeling weird and did blood work to find out I might have hyperthyroidism. With the beta blockers idk if I'm overthinking it, I feel like it's not working and I get anxiety that overcomes the effect of the pill. Guessing it's weak..idk what it actually feels like.
This is going to sound completely random, but have you ever resonated with any symptoms of ADHD? That level of caffeine a day screams "self medicating to function" and maybe it's thyroid related, but it might be worth going down a Google rabbit hole if needing that much caffeine isn't new for you. Disclaimer that I'm not a doctor, I just have a lot of neurodiverse friends who were often having an untenable amount of coffee or energy drinks before diagnosis. Anxiety is extremely common with Graves. I was so paranoid I was convinced I or my husband would die at any moment. It probably took about 4 months for that to completely calm down. The heart rate got back to normal within 2 weeks on beta blockers. They helped with anxiety, but didn't erase it immediately because I was so amped from being hyperthyroid for so long. It wove a pattern of fear and stress into my brain that it took a fair bit of time to unravel. Hang in there, I promise this is the hardest part. 6 months from now you'll wake up and this week will feel like a bad dream.
Oh wow good catch! I was diagnosed with ADHD at 3 yo!. Got out of meds in high school( father said ADHD wasn't real). Been doing ok for the past 15 years no meds, just trying to take my time on some things. i drove to the hospital 5 times and sat at their parking lot thinking I was having a heart attack. Told myself it was a panic attack and went home. My MIL is a therapist and really helped me with my breathing and mental anxiety, but now it's worse than before. My dad had the disease back in 92' and they did the removal with radioactive iodine. He ballooned up to 550lbs cause I guess he wasn't taking his meds. I'm gonna try and beat this and not be like that Well hopefully everyone with this disease gets better!
I had a lot of fatigue when I was on a beta blocker and was happy to finally get off of it after a year.
That’s a low starting dose of methimazole imo. Maybe ask your doc to increase it? I started on 20mgs and within two weeks my tremors had gone away and I no longer had to take propranolol. 2 weeks after that my blood work came back with T4 looking great so now I am on 10mgs of methimazole and it will be lowered again if my next 4 week blood check looks good
definitely something to talk to your endocrinologist about. Surgery isn’t a decision to make lightly. And it comes with its own risks and complications.
Surgery is my first/best option bc I’m breastfeeding and will try to get pregnant again soon (I’m 37 so times a ticking). All this to say, surgery seems like the best/first option for me. I’m choosing not to take MM bc it kinda seems miserable and potentially poisons your liver, not to mention what it would do to a pregnancy. I’m an all or nothing person too, so removing it really appeals to me. If it feels like it’s the best option for you OP, you’re not alone!
Yup, my wife is a IBCLC and RD, and she said that graves caustes a lot of low milk supply. Pretty much 70% of her patients have some sort of thyroid issues. Hopefully everything works out for you!
The actual relapse rate is actually closer to 50%, which is still a lot, sure, but a lot of people want to give that a shot first before making permanent decisions. That being said, removing your thyroid may be the right choice for many people who want to get it over with and don't want to try and see if they go into remission. The negatives I've read about are that you'll need to stay on meds for life, but if that's not a big deal to you, that's great. There's also some risk to your parathyroid and laryngeal nerve so you can have your voice damaged or have trouble swallowing after. That goes away for most people, but a lot of patients and doctors think surgery should be considered carefully because it does come with some risks. There's pros and cons to all the options we have, so definitely ask your doctors what they think is best for you, and make sure you have someone that listens to you and respects your wishes! It's not a one size fits all but I've heard a lot of people were happy with their thyroidectomy.
This is an awesome input , thank you 🙏🏾🙏🏾🙏🏾 I will see what the doctors say after my uptake. Just been feeling so miserable, especially working in the trades and having young kids and now this hits me. I shall do more research and ask more questions.
Totally fine to just have it removed and not have to worry about potential future drama. My endocrinologist only offered RAI, no TT surgery, and the methimazole was working great so I was happy. Currently in remission after about 4 years on methimazole. It took me about 3 months on 10mg/day methimazole to feel normal when I first was medicated.
It took 4 years?!?! During those 4 years, about how many days/months did you not feel well?
This is just how it is. Graves is a lifelong condition. It takes a few months to get your meds right and feeling better- Years to remission. You feel much better wayyy early than that, usually only after a month or so of meds. Your body has a lot of hormones to dump, the lifespan of them is very long. Remission is not just feeling better. Whether you have TT or stay on Methimazole, you will be taking medicine for life. TT just helps you stay leveled and removes the possibility of thyroid storm.
You're right. I guess with every doctor visit I just have to roll with the punches🙏🏾
Stay strong! My advice is to hang in, it does get better and manageable. You are just getting through the worst of it and recovering from how bad it got. The methimazole has worked great for me and im almost 2 years in with normalized levels now and I feel fine aside from my TED. I do get anxiety and heat intolerance, but that's just par for the course. Surgery may be for you some day, but you've only just begun. I think it's worth letting the methimazole do its thing, and let them lower your dose after a while.
Thanks for the solid advice and sharing your own battle with it. It's reassuring to hear methimazole worked out for you and gives me a bit more confidence moving forward. Also appreciate the heads up 🙏🏾
I felt good most of the time, but there was some up and down of my thyroid hormones that made me temporarily symptomatic again and that sucked.
It depends on how severe your condition/symptoms are. For me RAI or TT were really the only options. I lost fully 2 years of my life to brain fog. I only recently found out that remission was a thing that is possible to happen. It makes sense that, wherever possible, doctors would encourage a treatment plan that doesn't involve permanent damage or removal of an organ. That being said, a lot of people (doctors and laymen alike) act like "permanent solutions" are terrifying be-all end-alls when they're not. I have been told I should have waited for a cure or to see if I would enter remission (again, this was not remotely an option for me based on severity). People are scared of what they deem permanent damage. It's a fear of disability tbh (even though I am much less disabled now that my thyroid is a shriveled husk than I was when it was a functioning organ). I made the choice to get RAI after my second thyroid storm in as many months. If you want to just get rid of it and get it over with it's your body and your choice. I, for one, have no regrets.
My endo and I have been trying to find a dosage of methimazole that works for me (lmao none so far, it's either too much or too little and I'm very sensitive to the medicine) for about a year. We decided that RAI is not a good idea because of my TED and too many pets; so in one more year, if the medicine doesn't do its job, we're gonna do a TT. This way she doesn't have to fight so much with insurance. I'm also totally fine with "meds forever" if I can maybe not feel this way all the time.
Yeah I guess with graves either way TT or not, you will be stuck on meds forever
Not necessarily - some folks go into remission! There's always a hope for that! My game plan with my endo is specifically for me, everyone is different. The methimazole messes with my liver so I can't be on it forever. Who knows, maybe I go into remission within the time frame. Bodies are weird!
Remission but the chances of relapse must be so high. yeah bodies are weird, hopefully something good happens
Yup I removed mine. Best decision
Awesome! Was it an immediate impact of relief?
Have just decided to remove mine after almost of a year on meds. I can get my t4 in range but the TSH is way off and I want to have a baby. This is the fastest solution to getting my body in a place to conceive since I'm mid 30s and don't have a whole bunch of time left. I'm scared but I think it's the best decision in the long run.
Yup I'm thinking that's the best route instead of waiting more years like some people and having the possibility of relapse. Also post-partum would be crazy on top of having graves. Hope anything you decide to do goes in your favor 🙏🏾
Because doctors tell you that it will go away once in remission - which is not really true. (People think they just have to hold on for 8 months and then it’s done.) Lifelong medication just seems really unattractive but it’s better to substitute a hormone then have liver damage from taking carbimazol/ptu way too long. Some people here rather have graves and take that medication then remove it. I don’t understand that.
That's how I feel, but I'm new to all this. My father had it in the 90's, people told him to wait it out there might be a cure.. he removed it. There hasn't been a cure in 30 years.
I still have my thyroid. Surgery was never on the table for me. I did 4 years of treatment ad I'm now in remission. Graves comes with a huge variety of symptoms and getting acquainted with that will help you figure out what's normal and what isn't. You may need a change of medication so speak to your specialist, tell them exactly what issues you're having, and see if they can help.
And does the anxiety of relapse get to you? Do you have to be very careful on everything you eat? Or is it "normal" now.
One thing I did was get allergy/intolerance tested so food now is easier for me. I also stay away from iodised salt and seaweed. It becomes very much a new normal. Old me is old me. It's now been 7 years since my diagnosis and once new eating habits are formed it gets easier. I read everything I could find on Graves, stay away from forums and look for proper websites, and learned about the disease. The more you know the less afraid you'll be. I'm not anxious about relapse at all. I know the signs and when things need looking at I do it ASAP. Heart starts to flutter? Get bloods done and request an ecg is needed.
I was given the choice in 2015 when I was a senior in high school after 2 years of battling with medicine. I was told radioactive iodine or surgery. It's a big decision to make and from my perspective it may not have been the best. I recently had to go a week with no medication and no thyroid because my doctor wasn't available and I just got my refill today, but it could have been so awful if I had to wait much longer. So there is a lot to consider if it comes to this decision. But also thyroid cancer is in both sides of my family so I said just cut it out I'm tired of fighting an organ. Hindsight is always 20/20
Because they want to try less invasive treatment first. I mean either way you will be on meds the rest of your life you do realize?
It remission about 2 years ago. I still take a low dose of methmazoil to help me stay in remission. Right now, RAI and TT are not good options.
Do you tread carefully? Like diet, stress and all other things? It seems like such a hassle. But that's why I'm asking to learn more
Diet, I've started Weight Watchers about a year ago. It has helped me focus on eating healthy and helped me loose 30lbs. Stress, I'm a teacher so it can't be avoided, but I try to schedule myself to give me down time each day. I try to plan ahead my days and my schedule to avoid stress. So at work when I leave on Friday, I have the following weeks lessons planned out, prepped and copied.
Some people are too sick to handle the surgery.
I understand your sentiments. I’m getting mine removed in a month. The moment the doctor told me I almost knew I had to get it removed. I saw my grandmother suffer with breast cancer multiple times in my life bc she wanted to keep her breast. I want to know that this illness won’t come back regardless of what body part i have to lose. I want to experience the joys of life again and potentially have kids. Radiation isn’t a guarantee.
From reading, I found out most endocrinologists and surgeons only like to do thyroidectomies once you’re euthyroid - the methimazole has gotten labwork back to normal. Pretty much as soon as I was, I asked for a TT. My family wants to do some nomadic traveling stuff - going super hyper is not safe and could be downright deadly in some locales. He agreed and referred me, I got it done about a month ago. Still nailing down the right replacement thyroid med dose but I’m glad I did it. I feel like it will be a more stable future than on and off methimazole
How do you feel now that a month has passed? Any regrets?
None whatsoever. Either way, we’re dealing with a lifelong autoimmune disease, I like knowing I’m on a relatively even plain (plane?) with replacement thyroid medication & no big, out-of-the-blue symptom swings.
Do you feel "normal"?
Not yet! It can take a little while to get the right dose of levothyroxin. Right after surgery, I was a bit under medicated so we just upped my dose a little. I’ve been very tired. I have hopes, but even if I never feel 100% ever again, I at least know I’ll never feel as terrible as full blown hyperthyroid ever again!
Would be an easier decision if just removing it actually cured the patient, like removing a gall bladder. However, removing the thyroid is not a cure. You are swapping one set of issues for another, albeit less life threatening, set of other issues. And removing still requires a lifetime of medication/treatment. Not to mention the risks of the surgery itself.
I got mine completely removed in august of 2022. I was 100 pounds, really sick. Ended up being allergic to medication to treat it. Suffered through it for awhile, was on PTU which was a threat to my liver. Got stable enough to get pregnant, pregnancy sent me into remission. A few months after I had my daughter I got it removed and I’ve been on levothyroxine ever since.
So worth it or nah? Also congrats on baby!
Thanks! Personally, I think it was worth it for me. I had a harder time trying to take meds I was allergic to. I am struggling with trying to lose weight since having it removed but I have no side effects from the levothyroxine and my surgery went smoothly
That's awesome! I'm glad you're doing great!
As someone who was unable to go into remission, keep your thyroid if you can. The constant juggling act for not only my thyroid levels but also vitamin D and calcium/ phosphate is a pain in the ass. My type 1 diabetes is easier.
Oh wow , that's kinda annoying. Would it be the same juggling act if you had graves but without feeling like shit everyday?
The calcium phosphate issue is from the thyroid surgery. Don't get me wrong, I needed it any wounds make the same decision again, but it's a pain in the ass to manage now, just slightly less debilitating. The difference is, diabetes I can monitor at home, I can treat and manage at home, and I have appropriate hormone therapy for it. Thyroid replacement is difficult to get stable but easy once it is, but damage to the parathyroid is much harder - that's the complication I have. It's taken me 15 years to stabilise it.
Since I'm one of the people that ended up with crippling post op complications... I'm now definitely on the "surgery is the last option" boat
Can you elaborate more?
I had 1st surgery to remove half my thyroid - 0 complications, life was great. I relapsed 10yrs later & opted to have the rest removed. After 2nd surgery, my calcium glands (parathyroids) went into shock. It's a known complication. I'm on 8 calcium tablets a day. I also now have "autoimmune gastritis" - bloating, constipation, sometimes diarrhoea. Not sure if that's caused by my Graves, or all the medication I'm taking. Less seriously,, it's taken 2yrs to get my Eltroxin dose to a good level - so I've gained weight and feel tired all the time
That's crazy..I'm so sorry you had to go through that .. that feeling of relapse AFTER 10 YEARS!! must've been defeating. I will definitely research everything you went through. Hope you're feeling better. Did they say it might get better?
Awh thank you. Endo says the calcium issue resolves for most people within 6-12months... since its been 2yrs for me, so I'll be on calcium for the rest of my life. The gut issues - I've no idea. Even 2 yrs later the docs seem to be guessing alot. My next step is gut biome testing
It’s a reasonable option if that’s what you decide to do - you will probably just need to try to get more normal levels on meds first. I had mine removed three months after diagnosis after careful research then advocating for what felt like (and still does two years later) the best decision for me. All of my graves/thyroid related symptoms were gone by about 6 weeks post surgery. I was lucky I had no complications from surgery and got on a stable dose of Levothyroxine quickly.
did you experience weight gain post surgery? that's something I'm nervous about, looking to see other people's experiences with it
I did gain weight, but only what I lost w my acute graves (I lost about 25 lbs pretty rapidly, much of it muscle mass). I have regained muscle mass, can exercise vigorously again. So much healthier now. Weight is stable.
Thanks so much for sharing!
How long have you been treating your Graves? I’m about 6 months in with Graves and started at 30mg of methimazole (my bloodwork was off the charts bad) and started feeling better about 4 weeks in. My doc and I have discussed therapy but I wanted to give a full year trying the non surgical route as it is a major surgery with plenty of risks and long term lifestyle implications. I’m now down to 15mg methimazole and since I’m responding well to the meds and have virtually no side effects I see no reason to pursue surgery.
If you remove your thyroid, you're guaranteed to be on meds the rest of your life. If you don't remove it, there's a chance you could taper off eventually. Obviously, there are a lot of factors that go into, and it's definitely a decision that should be made with your doctor.