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#1 March 7, 2018 18:13:25

youngshim
Registered: 2018-03-07
Posts: 1
Profile  

3 relapse in 6 years - time for tt?

Hello~~
I am currently considering tt and would appreciate advice from members.
Also I would like to know how it affects ted.
Thank you.

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#2 March 9, 2018 17:56:37

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4052
Profile  

3 relapse in 6 years - time for tt?

Hello and welcome! Hopefully, you will get some responses from those who have chosen thyroidectomy.

Another round of antithyroid meds would also be an option if you tolerated the meds well and it kept your levels under control.

Thyroidectomy does not worsen TED, and we've heard anecdotal stories from some who had improvement in eye issues following thyroidectomy. There was also a study out of University of Michigan that suggested that patients who undergo thyroidectomy tend to have better outcomes in regards to TED.

Wishing you all the best!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 March 10, 2018 04:25:18

Liz1967
Registered: 2014-02-25
Posts: 243
Profile  

3 relapse in 6 years - time for tt?

My only regret is not having a TT sooner and I had it after 6 months of being on methimazole. Surgery was easy, home same afternoon, no pain, back to normal in two days. Immediately felt better and I am within 12 micrograms of my original starting dose of levothyroxine after 5 years, so not changing dose all the time. I get labs yearly, only TSH, and I feel like I did preGraves. I believe it did help stop my thyroid eye disease.

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#4 March 10, 2018 18:55:29

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 135
Profile  

3 relapse in 6 years - time for tt?

I'm 100% happy with my TT, but I didn't really have a choice in the matter. I had a large, suspicious nodule and my thyroid was so large it was choking me, so it had to come out. I had actually favored TT when I was first diagnosed though, so I think I surprised the surgeon with how cheerful I was at the news that I needed a TT. Speaking of surgeons, the only reason I'm glad I waited to have my TT is that I had access to a better surgeon by waiting. Get the best surgeon you can. My surgery was extra challenging, but I had no complications at all, and I'm confident that this is mostly due to the experience and skill of my surgeon.

I think the primary reason many people avoid RAI is that it increases the chance of TED. You should be aware that you can still get TED after TT. My TT was Nov. 2015, and 6 months afterward I became hyper and started experiencing some TED symptoms. They subsided after my dosage was lowered, but they still come back intermittently. They are mild and mostly only affect one eye. When I was first diagnosed and very hyper, I had some eyelid retraction (that went away), so maybe that was an indicator that I might get TED? I don't know, but I don't want anyone to have the impression that having a TT eliminates the risk of TED. I can't help but wonder if the mild symptoms I have would have been worse if I'd had RAI.

I've always had issues with low TSH, and they've persisted after my TT. Due to my low TSH, my endo keeps lowering my dose. I started at 175 and am now down to 100. This is not something you should worry about happening to you - I've had a problem case practically since the day I was diagnosed. (It took a year for me to find the right dose of methimazole).

As far as the surgery goes, it really was easy. I went to the hospital in the morning and was feeling well enough to eat a regular dinner that night. My surgeon had me stay the night at the hospital, and I believe that's the norm. I had pain meds in the hospital, but when I checked out, they only prescribed 600 mg ibuprofen - only 20 tablets, and I didn't even take them all. I had some chloraseptic for my throat and used it maybe once or twice. I was hoarse for a couple of weeks from the breathing tube, but my vocal cords were fine. They used a special breathing tube for this surgery that alerts the surgeon when their instruments are getting close to the nerve that affects the vocal cords. This is something you should ask about. Also ask how many TTs the surgeon performs annually (should be at least 50).

If you decide to have a TT, feel free to post any questions you have. I'd be happy to answer, and I'm sure Liz and others would as well.

Edited emmtee (March 10, 2018 18:57:44)

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