Life without a thyroid?
April 15, 2022 1:56 AM Subscribe
My thyroid needs to be removed completely. What should I expect after the surgery (both in the short and long term)?
I have an overactive thyroid caused by Graves' disease. After years of mostly unsuccessfully trying to get it under control with medication, my doctor recommends total thyroidectomy. If you or someone you know had their thyroid removed too - how long did it take to get back to normal? Were there any long-term negative effects? Did you generally feel better afterwards? My doctor claims it's usually a huge relief for young-ish patients (I'm 30F) with overactive thyroids, and that they generally feel much better afterwards, but according to Google this might not really be the case (I'm mostly worried about weight gain, fatigue, voice issues, depression and so on). How was your experience? Thanks.
I have an overactive thyroid caused by Graves' disease. After years of mostly unsuccessfully trying to get it under control with medication, my doctor recommends total thyroidectomy. If you or someone you know had their thyroid removed too - how long did it take to get back to normal? Were there any long-term negative effects? Did you generally feel better afterwards? My doctor claims it's usually a huge relief for young-ish patients (I'm 30F) with overactive thyroids, and that they generally feel much better afterwards, but according to Google this might not really be the case (I'm mostly worried about weight gain, fatigue, voice issues, depression and so on). How was your experience? Thanks.
My mum has had her thyroid removed. Things I've noticed:
Her energy levels are probably better.
Traveling she has to be mindful of her medication. It needs to be refrigerated. She also had to make sure she was on top of her prescriptions with the pandemic related shortages which was a little stressful. She's medication reliant which took some grieving and processing- she has to take a tablet pretty much every day (on weekends she's half a tablet & no tablet) for the rest of her life.
Her singing voice is different and I think that's been quite devastating.
posted by freethefeet at 3:42 AM on April 15, 2022 [1 favorite]
Her energy levels are probably better.
Traveling she has to be mindful of her medication. It needs to be refrigerated. She also had to make sure she was on top of her prescriptions with the pandemic related shortages which was a little stressful. She's medication reliant which took some grieving and processing- she has to take a tablet pretty much every day (on weekends she's half a tablet & no tablet) for the rest of her life.
Her singing voice is different and I think that's been quite devastating.
posted by freethefeet at 3:42 AM on April 15, 2022 [1 favorite]
I had a total thryoidectomy as did my mom, both due to cancer. Neither of us had overactive thyroids, so the experience was a little different- no thyroid level issues before had (thyroid cancer is weird like that), and the general goal is to have a high enough dose to stay on the hyperthyroid side after, so I really haven't had much experience with "dose is too low" symptoms- some mild fatigue once for a few months.
Managing the dosage has been mostly easy. Main exception: if you're planning on getting pregnant, that gets a bit annoying (blood tests every month; it took about 18 months post pregnancy to get my post partum dose right), but I'm not sure how that would compare to any sort of monitoring you'd need to do now. Other issues are insurance things- I had been on brand name Synthroid (most endocrinologists want you on a consistent brand/manufacturer and that's easier with brand names) and then my insurance stopped covering it, and switching to generic required more testing to double check my dose.
I did have temporary vocal cord damage after my surgery; my mom's was permanent (but again, cancer- they need to get all of the tissue out); she ended up with a vocal implant. Her voice quality is different now, but not drastically. I also lost a parathyroid and had some calcium regulating issues post surgery.
But otherwise...it's fine. I take a pill every morning and get my blood tested every 6 months to a year.
posted by damayanti at 5:03 AM on April 15, 2022
Managing the dosage has been mostly easy. Main exception: if you're planning on getting pregnant, that gets a bit annoying (blood tests every month; it took about 18 months post pregnancy to get my post partum dose right), but I'm not sure how that would compare to any sort of monitoring you'd need to do now. Other issues are insurance things- I had been on brand name Synthroid (most endocrinologists want you on a consistent brand/manufacturer and that's easier with brand names) and then my insurance stopped covering it, and switching to generic required more testing to double check my dose.
I did have temporary vocal cord damage after my surgery; my mom's was permanent (but again, cancer- they need to get all of the tissue out); she ended up with a vocal implant. Her voice quality is different now, but not drastically. I also lost a parathyroid and had some calcium regulating issues post surgery.
But otherwise...it's fine. I take a pill every morning and get my blood tested every 6 months to a year.
posted by damayanti at 5:03 AM on April 15, 2022
I've been sans thyroid since 2008. Mine was removed for cancer when I was 35. I also didn't have much in the way of symptoms before the cancer was discovered (my TSH was in the normal range). Recovery was pretty easy... I felt shittiest when preparing for radiation, which you won't do. Yes... it took some time to get my dosage right. But it's mostly been smooth sailing. I have periodically needed by dosage tweaked. In most cases, I didn't even realize when I was hypothyroid (found by testing). But being hyperthyroid is always signaled by heart palpitations for me. But mostly, it's not a significant factor in my life.
posted by kimdog at 5:22 AM on April 15, 2022
posted by kimdog at 5:22 AM on April 15, 2022
I had mine out in 2006 due to cancer. It took a couple of months to get my energy back but since then I have had zero problems. My weight is good, my voice is normal, my energy is okay but I’ve never been a high energy person even as a kid. Basically it’s a big nothing other than having to refill the prescription every three months and get labs done to monitor my levels. Oh and not being able to have breakfast the minute I wake up felt tragic for a while but I’m used to it now.
posted by HotToddy at 7:53 AM on April 15, 2022
posted by HotToddy at 7:53 AM on April 15, 2022
My mother used medication to deal with her Graves Disease for years and years. About ten years ago, meds stopped working and she had her thyroid removed. She was very nervous. In the end, she wishes she had done it sooner. She obviously needs to take meds but other than that she feels healthier, like her energy is more stable, and she rarely if ever think about it. Wishing you all the best of luck!
posted by jeszac at 11:06 AM on April 15, 2022
posted by jeszac at 11:06 AM on April 15, 2022
I had a long-term relationship with a woman who'd had her thyroid removed, and one of my best friends had it removed too - both for cancer, not because it was overactive. Both are perfectly fine and it doesn't affect their lives much. My ex did mention that getting her dosage right had taken a while but it was 99% a non-issue. My friend mentioned once that he was uncomfortable being compared to some of our friends who really struggle to manage various conditions because they have to choose between side effects and insufficient medical effect, because - for him - as long as he takes his meds on schedule he's absolutely fine.
I know that's not everybody's experience, but for the two data points in my life, it seems like it's a complete non-issue.
posted by Tomorrowful at 12:11 PM on April 15, 2022
I know that's not everybody's experience, but for the two data points in my life, it seems like it's a complete non-issue.
posted by Tomorrowful at 12:11 PM on April 15, 2022
My mom had an overactive thyroid caused by Graves’ disease and had it removed maybe 25 years ago, when she was in her late 30s or early 40s. There have been no negative long term effects - her weight is stable (and the same as it has been her entire adult life), no issues with fatigue, her voice, or depression.
It does take a little adjustment occasionally to ensure that she’s on the correct dose. IIRC, she has it checked about once a year at this point, and every few years it needs adjustment. Often, she doesn’t even notice any physical symptoms from the dose needing adjustment - it just shows up in her bloodwork (even if it’s not bothering her, it’s important to have the correct levels because it affects things like cholesterol levels, bone density, etc).
I’m at high risk for thyroid disease myself - in addition to my mom having Graves’, her mom also had some type of thyroid problem. But after watching my mom deal with it, I’m not at all worried about it - for her, it’s been about as minor and easy to manage as a chronic condition can be.
posted by maleficent at 1:02 PM on April 15, 2022
It does take a little adjustment occasionally to ensure that she’s on the correct dose. IIRC, she has it checked about once a year at this point, and every few years it needs adjustment. Often, she doesn’t even notice any physical symptoms from the dose needing adjustment - it just shows up in her bloodwork (even if it’s not bothering her, it’s important to have the correct levels because it affects things like cholesterol levels, bone density, etc).
I’m at high risk for thyroid disease myself - in addition to my mom having Graves’, her mom also had some type of thyroid problem. But after watching my mom deal with it, I’m not at all worried about it - for her, it’s been about as minor and easy to manage as a chronic condition can be.
posted by maleficent at 1:02 PM on April 15, 2022
I had hyperthyroidism and then I had my thyroid zapped through radioactive iodine over twenty years ago. Now I take a daily levothyroxine pill.
It is completely better than trying to live with hyperthyroidism and taking meds for that. Those anti-hyperthyroid meds seemed to not work regularly, resulting in a flareup; and the docs told me that long-term usage would also cause organ damage. With hypothyroid and levothyroxine, there's much less to go wrong. Over those 20+ years, I can think of a few times - maybe three - where there was an issue, and one of those times was just because I didn't heed the warnings on the medication label. Even during those times, the symptoms aren't severe.
The medication is one of the most common and cheapest prescribed meds. The vast majority of people taking it have no problems, so they don't complain and post about it on the internet.
The only thing that is an issue now (and it's really the medical establishment in general) is that the ranges for "normal" are far too wide when you get a blood test for thyroid stuff. For example, if the normal range is 1-5, you will absolutely feel like garbage and have symptoms at 1.1 and 4.9, but doctors will ignore it because you're in the normal range according to the lab. So you may need to find a doctor who actually listens to you instead of brushing you off because the numbers are right.
posted by meowzilla at 1:21 PM on April 15, 2022 [1 favorite]
It is completely better than trying to live with hyperthyroidism and taking meds for that. Those anti-hyperthyroid meds seemed to not work regularly, resulting in a flareup; and the docs told me that long-term usage would also cause organ damage. With hypothyroid and levothyroxine, there's much less to go wrong. Over those 20+ years, I can think of a few times - maybe three - where there was an issue, and one of those times was just because I didn't heed the warnings on the medication label. Even during those times, the symptoms aren't severe.
The medication is one of the most common and cheapest prescribed meds. The vast majority of people taking it have no problems, so they don't complain and post about it on the internet.
The only thing that is an issue now (and it's really the medical establishment in general) is that the ranges for "normal" are far too wide when you get a blood test for thyroid stuff. For example, if the normal range is 1-5, you will absolutely feel like garbage and have symptoms at 1.1 and 4.9, but doctors will ignore it because you're in the normal range according to the lab. So you may need to find a doctor who actually listens to you instead of brushing you off because the numbers are right.
posted by meowzilla at 1:21 PM on April 15, 2022 [1 favorite]
My mom had a hot node in her thyroid, giving her Grave's disease. She had a radioactive Iodine treatment which destroyed her thyroid's ability to make hormone, and she took levothyroxine ever after. No problem. Sounds scary, but it isn't a surgery, you go on a low iodine diet for a few days before, the thyroid is what grabs the Iodine you eat, then the radioactive version, sits at the thyroid does it's destructive magic, and goes away. Here is The Cleveland Clinic's take.
posted by Oyéah at 4:07 PM on April 15, 2022
posted by Oyéah at 4:07 PM on April 15, 2022
My wife just had her thyroid removed (like, this past Tuesday) for cancer. Too early to see what life-without-a-thyroid is like, but they said she could probably get away with a half-thyroid removal with modest risk of cancer recurrence everyone she talked to (and it does seem like a lot of people have had their thyroid out, which surprised me) said "nah, get the whole sucker taken out, you can do just fine without."
Many people say their dose of levothroxine got dialed in quick, but apparently it's possible for it to take a while, and over the short term it can be bumpy. But it seems like once a good dosage is figured out, it' works as well or better than their thyroid did in terms of keeping metabolism/energy levels/mood stable.
posted by jackbishop at 3:13 PM on April 17, 2022
Many people say their dose of levothroxine got dialed in quick, but apparently it's possible for it to take a while, and over the short term it can be bumpy. But it seems like once a good dosage is figured out, it' works as well or better than their thyroid did in terms of keeping metabolism/energy levels/mood stable.
posted by jackbishop at 3:13 PM on April 17, 2022
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posted by The Underpants Monster at 2:48 AM on April 15, 2022