[Liz1967]

#1184718

The remission I was referring to is remission of the Graves disease itself, where you can get off methimazole, which is less likely to occur in people with the eye disease.
Latest studies are indicating that thyroidectomy does hasten the burnout of the eye disease. In my case, the eye disease stopped within 8 months after thyroidectomy. Of course, the hyperthyroid stops immediately when you have no thyroid.

Here is one study. It basically says thyroidectomy patients had a higher rate of early deactivation of the eye disease than methimazole patients.

The Effect of Early Thyroidectomy on the Course of Active Graves’ Orbitopathy (GO): A Retrospective Case Study.
Meyer Zu Horste M1, Pateronis K1, Walz MK2, Alesina P2, Mann K3, Schott M4, Esser J1, Eckstein AK1.
Author information
Abstract
The aim of the work was to investigate the effect of early thyroidectomy on the course of active Graves’ orbitopathy (GO) in patients with low probability of remission [high TSH receptor antibody (TRAb) serum levels, severe GO] compared to that of continued therapy with antithyroid drugs. Two cohorts were evaluated retrospectively (total n=92 patients with active GO, CAS≥4). Forty-six patients underwent early thyroidectomy (Tx-group) 6±2 months after initiation of antithyroid drug (ATD) therapy, while ATD was continued for another 6±2 months in the ATD-group (n=46). These controls were consecutively chosen from a database and matched to the Tx-group. GO was evaluated (activity, severity, TRAb) at baseline and at 6 month follow-up. At baseline, both cohorts were virtually identical as to disease severity, activity and duration, as well as prior anti-inflammatory treatment, age, gender, and smoking behavior. At 6 month follow-up, NOSPECS severity score was significantly decreased within each group, but did not differ between both groups. However, significantly more patients of the Tx-group presented with inactive GO (89.1 vs. 67.4%, * p=0.02), and mean CAS score was significantly lower in Tx-group (2.1) than in ADT-group (2.8; * p=0.02) at the end of follow-up. TRAb levels declined in both groups (Tx-group: from 18.6 to 5.2 vs. ATD-group: 12.8-3.2 IU/l, p0=0.07, p6months=0.32). Residual GO activity was lower in Tx-group, associated with a higher rate of inactivation of GO. This allows an earlier initiation of ophthalmosurgical rehabilitation in patients with severe GO, which may positively influence quality of life of the patients.

[goodfriendjen]

#1184719

Hi There!

Been on MMI (mostly) for almost 5 years now. The first year was difficult but that was as a result of bringing my thyroid levels back to normal after initial diagnosis (they were really, really high). Since then it’s been smooth sailing. I tried to get off meds once but in 4 weeks I was hyper again. No remission. I’ve had two pregnancies (currently 24 weeks with second) and was on PTU 110 mg during first trimester of both and then only 5 mg MMI after. With first pregnancy I was able to come off meds in third trimester and stay off for about 5 months postpartum. That was GREAT! Hyperthyroidism came back, though and I was put back on 5 mg MMI; no remissions for me. I am typically on 5 but have been stable on as low as 2.5 mg dose. I think I respond pretty well to the MMI and have always remained stable, and on 5 mg or less since I my levels got back into normal range after initial diagnosis. I’ll likely stay on the MMI as long as I can since I respond so well and haven’t had any issues with it. If I ever run into the situation where 1. I have to do something definitive, or 2. one of my daughters is diagnosed with GD, I’ll likely elect the TT – maybe we’ll do ti together! One of the top 10 endocrine surgeons is in my area and she’s amazing. The only reason I didn’t do it earlier was because I was diagnosed with GD at almost 36 years old, only 3 months after my wedding and we wanted a family. Took a year to stabilize and then we tried. Nine months to get pregnant, then M/C, then a few more months trying and we finally conceived #1 at age 37 with the help of a fertility specialist. Then #2 was conceived the month of #1’s first birthday! So I’ll be 41 when this one is born. Saying all that to say, you do what you can with what you have and make the best decisions you can at the time! Just don’t let anyone rush you into anything – stay on the drugs until you’re sure. That’s my best advice!

[Suze]

#1184720

GoodfriendJen,

Apologies for the delayed response. Thanks so much for sharing. You are quite lucky if you can remain on such low doses of MMI. I used to be able to do that, but not for some years now. They say those who can keep on low doses may be able to maintain at that. As for me, I am going for another opinion tomorrow.

Congrats on having what sounds like a great family.

Suze

[Suze]

#1184721

MK – if you get this, how did your son’s surgery go?

Suze

[Suze]

#1184722

Liz,

I meant to thank you for this. It was very helpful.

Suze

[SueAndHerZoo]

#1184723

Hi there fellow “Suze”

I had a TT in July of 2013 so will answer your questions as best I can:

• I haven’t found any downsides to having my thyroid removed. It’s much easier to keep your levels stable once you’re fully dependent on artificial replacement.
• Didn’t have any weight gain from the surgery.
• I don’t notice any difference in how I feel an hour after taking the pill as compared to how I feel 12 hours later. I don’t think it causes ebbs and tides of energy – if you’re taking it the same time every day it’s pretty much stable in your system throughout the 24-hour period.
• I haven’t been diagnosed with TED but I do notice that my vision fluctuates a little when my levels are changing. But that happened before my TT, too, so don’t think the TT affected my eyes in a bad way.
• I have recently been diagnosed with osteoporosis, but is it related to having my thyroid removed? I don’t think so. I think bone density can be affected by thyroid disease regardless of whether we’re hypo, hyper, have our thyroid or don’t have it.
• I’m above 50 and the scar is barely noticeable. No loose skin or sagging, and you really have to look to find the scar.
• Am I glad I did it? Absolutely, 100%, without a doubt. My ONLY regret is that I didn’t do it sooner.

Hope this helps – good luck whatever you decide.
Sue

[Suze]

#1184724

Sue,

This response could not have come at a better time. Meeting with the surgeon in 2 days. Wondering if I am making the right decision. I just spoke to people who had some thoughts that raised concerns. So happy to receive this. Thank you.

Suze

[Suze]

#1184725

Sue,

This response could not have come at a better time. Meeting with the surgeon in 2 days. Wondering if I am making the right decision. I just spoke to people who had some thoughts that raised concerns. So happy to receive this. Thank you.

Suze

[SueAndHerZoo]

#1184726

Suze wrote:

Sue,

This response could not have come at a better time. Meeting with the surgeon in 2 days. Wondering if I am making the right decision. I just spoke to people who had some thoughts that raised concerns. So happy to receive this. Thank you.

Suze

Glad it helped, and glad you’re going into this armed with information and education…. this is ultimately YOUR decision so the better informed you are, the better you’ll be able to make the right decision.

I think the success or failure of a TT almost entirely depends on the surgeon so go into the appointment armed with questions and concerns. Most importantly, how often does he do these? This is a delicate procedure and he/she needs to be VERY experienced with these.

Good luck – let us know what you decide.
Sue

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