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#1 July 12, 2016 19:18:50

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1909
Profile  

GD with TED

Again, echoing what Liz said. It is SO tempting to do the double vision asap, cause it is hellish to have, but waiting until “your eyes stop changing” is the thing to do. I remember,vividly, wondering,
“how in the hell will I KNOW when my eyes stop changing!!??” Wish I had a good answer for that.
I do know that strabismus surgery should come after OD, after all the healing has occurred, if you have an orbital decompression.
And of course since eyes are constantly changing I ended up being the parent of multiple pairs of glasses with new prescriptions…..
BUT you will get to the end of all all of this. REALLY. I thought it would never end.
Now, vision is fine with correction with prisms, and I MUST have eye drops with me at all times, and sun glasses everywhere. Very photophobic. Good thing I live in SEattle!


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#2 July 12, 2016 20:56:51

mojon
Registered: 2016-07-09
Posts: 19
Profile  

GD with TED

Thanks Liz, Kimberly and snelsen!

Since I've watched several of the videos, read some of the other posts, got your excellent suggestions and encouragement, I felt much better prepared when I met with the opthalmologist today. I know I'm not ready for surgery yet. I understand better what they're watching for and why. But I was able to specifically ask about how the specialists would go about working on my situation if/when I was ready for surgery. This time, going to a different opthalmologist (than the one who only told me "Unpredictable is all I tell you, not an emergency, if emergency I jump in, and left), I got much better and reassuring info/help. I think it REALLY makes a difference if you at least have some basic understanding of what's involved and what to ask about. Thanks to you, I'm in a better place today than I was yesterday. I look forward to watching every one of the videos.

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#3 Oct. 10, 2016 20:37:35

mojon
Registered: 2016-07-09
Posts: 19
Profile  

GD with TED

Update: My eyes seem to have settled down a bit, no longer changing, and am left with lotsa double vision. My endo doesn't trust my thyroid. He says my antibodies are out the roof. Recall I was hypothyroid for 20 years coming into this before my thyroid went nuts and messed my eyes up. I never had thyroid removed. Didn't need to because it wasn't producing. I am scheduled for a thyroid uptake scan so my endo can see what/if my thyroid is doing. If it is still doing something, he says we might be better off just taking it out. From what I've read here, that doesn't seem to present any big problem and may help take the thyroid out of the mix of things contributing problems? Whady'all think? I don't expect removing the thyroid to do anything to help the eye condition I'm left with, but maybe it will help stop any further activation? Eye docs are ready to do Orbital Decompression, then Strabismus once the thyroid numbers are stable.

So Many THANKS for this site and the messages you post. It has been extremely helpful.

GD with TED onset December 2015

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#4 Oct. 26, 2016 19:41:08

mojon
Registered: 2016-07-09
Posts: 19
Profile  

GD with TED

If removing the thyroid does not remove the anti-bodies, is there any point to removing the thyroid? What are the pros/cons of doing this?

Thanks!

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#5 Oct. 27, 2016 04:42:29

Liz1967
Registered: 2014-02-25
Posts: 202
Profile  

GD with TED

There are studies indicating that removing the thyroid does decrease the antibodies within a year. The eye disease burns out faster also than on methimazole. It is also easier to keep your thyroid hormone levels stable on levothyroxine, especially because your TSH returns to a detectable level. If your eye disease has already burned out, it won't make a difference, only in that recurrence of the eye disease may be less likely. There are several studies looking at thyroidectomy and thyroid eye disease. Here is just one of them.

https://www.ncbi.nlm.nih.gov/pubmed/19848063

I had severe eye disease and that was the main factor in my decision to have a thyroidectomy six months into the disease. The quick return to feeling normal again was also a big factor.

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#6 Oct. 27, 2016 08:15:05

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3993
Profile  

GD with TED

Hello - There have been some studies indicating a possible benefit to thyroidectomy in terms of TED outcomes, most recently out of University of Michigan Kellogg Eye Center.

However, for the studies I've seen that mapped out the actual antibody levels, the reduction in antibodies over the first year is similar for antithyroid drug therapy and surgery. The big difference is with RAI, where antibody levels tend to spike in the months following treatment.

All three treatment options have risks, including surgery. The risks of surgery can be reduced significantly - although not completely eliminated - if you use a high volume surgeon who does a lot of thyroidectomies each year. If you do have a high-volume surgeon in your area, a consultation would be helpful to determine if this is a good option for you.


Kimberly
GDATF Forum Facilitator

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

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#7 Oct. 28, 2016 09:17:24

mojon
Registered: 2016-07-09
Posts: 19
Profile  

GD with TED

Thanks Liz and Kimberly! This is good information. I have been confused about what thyroidectomy may or may not do. I will take this info with me to my next Endo visit.

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#8 March 26, 2017 19:04:22

mojon
Registered: 2016-07-09
Posts: 19
Profile  

GD with TED

UPDATE: Just had my first Orbital Decompression surgery. It is 16 months after the day I woke up with bulging eyes and the onset of GD with TED.

Surgery went fine. I don't even have black eyes or bad swelling. Double-vision is actually a bit worse, but doc said that might happen. That won't get addressed until Strabismus surgery. Doc did one eye first and will do the other in 2 weeks. I'm still trying to figure out the best place to do Strabismus surgery. There are some docs that do it locally, but they don't seem to be specifically familiar with Graves or TED. I think they mostly have done children with “Lazy Eye” problems. Do you think that would be sufficient?

I continue to read with much interest the information and postings here. THANKS for this website!

Edited mojon (March 26, 2017 19:06:03)

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#9 March 27, 2017 05:03:45

Liz1967
Registered: 2014-02-25
Posts: 202
Profile  

GD with TED

As TED is relatively rare, there are not going to be large volumes of TED patients with strabismus being seen in pediatric ophthalmologists' offices in smaller cities. Muscles in Graves patients present some challenges. I live in Cincinnati, which is a medium sized city, but still traveled to a center at a University that specializes in Graves (Kellogg Eye Center) for strabismus surgery. If you look at the CV's of the surgeons you are considering, you might find some have trained at centers where they would have seen lots of Graves patients, like Wilmer or Shiley or Kellogg. Sometimes on their websites, they will list an interest in Graves. My husband is an ophthalmologist and if he is not comfortable with a difficult case, he has no problem referring the patient on to a large volume national specialty center so you also have to trust the doc to know the limits of his expertise. If you are close to a major eye center or large city, that might be your best bet.

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#10 March 28, 2017 18:24:35

klassey
Registered: 2016-08-14
Posts: 19
Profile  

GD with TED

Wow, thanks for your update. It will be a year in April for me since the TED started and double vision in June started. So hopefully, I can see the light at the end of the tunnel soon. This is a journey like no other. Stay strong !

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