Thyroidectomy anyone?

[megumic]

Has anyone here had one? Know someone who has had one? Any experiences? Recovery issues? Risks? Stories, experiences, anecdotes, etc are all welcome!

As some know, I'm facing some thyroid issues. I have a few options right now, one of which is a total thyroidectomy. I'm just trying to gather as much info as possible from those who have been there and done that. Thanks!

(I'd also welcome any experiences with radioactive iodine as well!)

 

[megumic]

Crap. I was hoping at least a few of you would have some wisdom to impart. And I thought thyroid issues were more common...

 

[NewEnglandLady]

I didn't see this yesterday.

My mother and sister have both had their thyroids out. My mother has thyroid cancer and had hers removed about 15 years ago and my sister has Hashimoto's Disease and ultimately her doc felt that her thyroid was more of a liability for her body than an asset, so she had it taken out about 2 years ago.

My mother's operation was a bit more involved because of the cancer, so they had to remove surrounding tissue, scrape her vocal chords, etc., but her recovery time was relatively short (I think she was in the hospital for 3 days)? She has had several doses of radioactive iodine since.

About the radioactive iodine, to be honest, it was hard for her. I think what was hardest is how isolated you feel in the days afterward because you can't see friends or family. I think it made her feel sick and she did lose (some) hair, but not all.

My sister's operation was much easier, in fact, I think she was just an oupatient, so didn't even stay in the hospital overnight. Her thyroid was not swollen at the time, so they were able to get in and out easily. The recovery time was very fast and her scar is barely noticeable.

Both my mom and sister are on synthroid now and just see the doc to have levels checked.

I remember reading that you were diagnosed with hyperthyroidism. Have they identified the underlying cause? I only ask because you asked about radioactive iodine. I hope that everything is going as well as it can--while I've never had thyroid issues myself (thank goodenss), seeing how affected my mom and sister were from their thyroid issues was a little shocking--when their thyroids were overactive, they couldn't sleep, they had heart palpatations...my mom said she wanted to jump out of their skin. And when their levels were too low, they'd sleep all the time, felt depressed. It's amazing how much your body is at the mercy of your thyroid.

 

[audball]

My exBF's mom was hyperthyroid and had her thyroid taken out years ago. The surgeon missed one tiny itty bitty piece, and now her thyroid has grown back completely and sometimes obstructs her breathing during sleep.

I don't know a lot about it, but I know that some of the risks included slight to permanent damage to the vocal cords (possible loss of voice) which was a huge concern. She's decided not to have it taken out again and is on aggressive meds to keep it controlled and is monitored regularly. Her scar is somewhat noticeable, but isn't unsightly or anything. (she's in her mid 50s).

My best friend is hypothyroid and is on syntheroid. Having your thyroid taken out would bring on more symptoms like hers. Some of the biggest things she hates about her condition is that she is often lethargic and because of her very slow metabolism she has difficulty with her weight. She has trouble losing weight and keeping it off because even with heavy exercise and extreme calorie counting, she just can't get it to move a lot and her endocrinologist said it is likely to be even more difficult the older she gets (we're mid 20s). She also has the benefit of usually never feeling hungry, which you'd think would help with not overeating, but this side effect comes with also never feeling full, so she always clears her whole plate (and with portions in the US...that perpetuates her weight problem).

Just some thoughts. I don't know a lot about the condition, but I know having seen both sides that it's hard to deal with. I hope that you find peace with your decision, whatever it may be.

 

[pancake]

Hey Megumi, I assume the reason why you are thinking about definitive therapy is because you don't want to be on antithyroid meds whilst TTC? Usually the first-line therapy for Grave's (if this is what you have - autoimmune hyperthyroidism) is antithyroidals, and then a consideration of a trial off therapy after a couple of years, after which it must be said that the majority of women still relapse.

In terms of definitive treatment, I think this is something you should sit down and talk about in detail with your endocrinologist, and maybe talk to the neck surgeon as well to get a feel for how comfortable you are with the options. I work in endocrinology (albeit paediatric, not adult) and I have to say that I think if all was equal - keeping in mind that every clinical situation is unique - I would probably go for radioactive iodine - because it is non-invasive, is not associated with the surgical risks, is well-tolerated, and the risk of secondary malignancy later on is almost non-existent.

 

[megumic]

Thanks NEL, audball and pancake! It's nice to hear others who have had positive experiences.

NEL, one endo diagnosed me with Graves. Another didn't bother to diagnose and just wanted to treat. A third endo won't diagnose until we let some more time pass to get more bloodwork done. But yes, you're correct - the thyroid controls everything, it's incredible! Thanks for sharing

Audball, thanks for sharing! It's good to hear how others have approached it, the results and what other factors have impacted them. It's amazing how different everyone's thyroid stories are and no two are the same. It's frustrating b/c there's no baseline generality for anything. PLus, it's hilarious the thyroid can grow back -- kind of like a lizard tail!

Pancake, thanks so much for your professional two cents! I really appreciate it. It's been so hard to know what to do b/c everyone seems to have a different opinion. I've been to three endos and they all ahve differing positions. I've been advised that PTU during pregnancy is safest, but that it also has a black box warning and that to proactively get preggo while being Graves is haphazard b/c I will need the PTU to maintain the pregnancy and while benefits of PTU outweigh risks, it's still a Class D. One endo said that if I want to get preggo soon, he reccs RAI and then waiting 6 months (some have said one year...). I feel that is aggressive since I have a mild case. Anecdotally, I've read stories of plenty of women whom have had great pregnancies on PTU. I've also read RAI horror stories (antibodies still present, Graves Eye Disease). I've also read thyroidectomy horror stories (vocal cords, parathyroid glands). I'm at a loss of how to proceed, I just know that getting pregnant without TSH isn't a great idea, if I could even get/stay pregnant. Any other insight you can offer would be great. Thanks again!

 

[gongjoo143]

Hi - I thought I'd add my story. I was diagnosed with hyperthyroidism and Graves while we were TTC and going through infertility treatment. It was asymptomatic and I have no eye disease. I was put on PTU and my TSH, T3 and T4 regulated within a few months. I got pregnant with an IUI and was monitored closely by my endocrinologist. I was weaned off PTU pretty quickly and completely stopped it by the time I was 6 weeks pregnant. My thyroid levels were checked once a month during pregnancy and I had a CBC about halfway through. The Graves was suppressed during pregnancy and I felt awesome. 6 weeks postpartum, my levels were fine. However, 3 months postpartum, I went through a stressful time when we moved and I became hyperthyroid very quickly. PTU for 1-2 months got it back to normal. Per Drs orders, I took PTU after nursing or pumping when there was the longest stretch of time to get it out of my system. My baby had his thyroid panel run after that and he was not affected by the PTU. We are actively TTC #2 and my thyroid levels have remained stable.

I was told by an endocrinologist that with each subsequent pregnancy, the Graves is suppressed less and I may need to be on more meds. I'll entertain the idea of RAI but hopefully only after I'm done having kids. Hope this helps. Best of luck to you!

 

[megumic]

Wow, gongjoo thanks for sharing! Your story made me feel hopeful. Did your Dr attribute your fertility issues to Graves? Your post has helped answer some questions docs haven't yet answered. I'm mostly concerned about whether Graves comes back after (if) you hit remission with meds, and like you noted, that it gets subsequently worse. This is critical information to me b/c it will help me plan how I'll proceed. No doctor has been able to tell me what is the BEST and OPTIMAL path to pursue right now and it's so frustrating. But thanks for sharing, I really do appreciate it!

 

[pancake]

PTU is definitely the preferred agent during pregnancy but the critical time in fetal development as far as antithyroidals and thyroxine go is the first trimester and you cannot be on carbimazole at that time - at least that is the general advice we give, as carbimazole has other effects on the fetus during that time as well. Also, the fetus is dependent on mum's thyroxine in the first 12 weeks, and antithyroid medication crosses the placenta much better than maternal thyroxine during that time. Later on, it is preferable for mums to come off their antithyroidals around the time of delivery so as to try and prevent neonatal hypothyroidism/goitre, and in that case if the woman is symptomatic then beta blockers can be given to alleviate symptoms.

In terms of antithyroidals, the risk to the baby is dose-dependent - your endo should be able to tell you about this. Many women do have good pregnancy outcomes on antithyroidals, but equally you would not want to be on large doses of PTU.

Women with Grave's who have remitted during pregnancy (ie come off meds) have a very high risk of relapse post-partum whereas those who stay on medication during pregnancy and have good control with that have a low risk of "thyroid storm" (basically when your thyroid goes nutso and you become acutely horribly thyrotoxic).

Regarding your antibody status, Megumi - it won't change regardless of the treatment modality, and the fact that you have ever had autoimmune hyperthyroidism means that all of your babies should have their thyroid function checked at birth and several times in the first week to month of life as they will be at risk of neonatal hyperthyroidism. (Conversely, if you are on antithyroidals in the 3rd trimester they are at more risk of hypothyroidism).

Are you on medication now? If you are getting the picture that you only need relatively small doses of antithyroidals to suppress your T3/T4 now (or are even just being watched, with a suppressed TSH but normal T3/T4), then I think it is a different ballpark than if you are needing >20mg carbimazole a day to get things under control.

OK, that is enough of my medical lecture! Back to being a PS civilian I hope that you are able to make a decision that works for you, Meg!

 

[JulieN]

My friend had one, I think it was precancerous or something. He's doing great now. He's on a testosterone therapy, which makes him incredibly some days, and sometimes has to in the restroom at work.

 

[ame]

I was actually born without mine and have been on Synthroid all my life. I was diagnosed in utero at about 5 months, my mother has a non-functioning one all her life. So they knew to look. If you have a child in utero, they will check for it now, and will prescribe the medicine to the mother based on what both need. Itll take some trial and error on dosing for about a year or so but when you get on the right level, it's a lot easier.

I don't know if they make Armour anymore, it was REALLY pricy for a while because it's rarely prescribed anymore, and tends to only do best for a small amount of people.

 

[movie zombie]

yes, Armour is still made.....i take it. it seems to me to be incredibly inexpensive.