[mojon July 9, 2016 at 9:34 pm Post count: 25]

#1060753

I’m new to this site. I’ve read thru some of the posts. I’m 62 year old male with sudden onset of Graves Disease. Woke up one morning and my eyes were red and bulging. That was 8 months ago. I see an Endo and Eye doc. I did get IV steroids, then my cancer doc recommended Rituximab as a good autoimmune drug. Eye swelling and redness went down, but I’m left with pretty bad double vision. It started when I’d look out the sides or up/down. Now it’s all the time, even straight ahead. Only way I can see is with an eye patch because each individual eye still seems to work, they just won’t work together. Misaligned? I’m hoping this thing stabilizes, and wonder how you know when it has? I saw some mention of understanding the various Thyroid tests, T3, T4, Thyroid antibody, Free T, etc. I don’t really understand these that well, other than my Endo has me get plenty of blood tests. Is there a place where that basic information is found?

Little more history. My thyroid quit working at least 15 years ago and I had been taking levothyroxin with absolutely no problem, never noticed any difficulties. In 2014 I was diagnosed with squammous cell carcinoma of the paranasal sinuses. I completed radiation and chemotherapy for that (Cisplatin), and now showing cancer free. I’m 2 years out now and finally am able to eat, swallow and taste some. But 8 months ago all the sudden my thyroid levels went wild. I became hyPERthyroid instead of hyPOthyroid, which I had always been. Not sure if the cancer or treatment set off something? I come from a long line of relatives that had thyroid problems, so who knows where it came from.

Apparently you don’t want to get eye surgery until things stabilize, because the target might keep moving and you only have so many chances? But how and when can you get the double-vision problem to stop or stabilize? The first eye specialist simply told me to understand and expect “unpredictable, that’s all I tell you”. I’m going to see another eye doc whom people say doesn’t mind communicating.

Any feedback, suggestions are most welcome.

I live in Columbia, Missouri. I looked for a GD support group either here locally or in Missouri but did not find any.

[KimberlyOnline Facilitator July 11, 2016 at 6:47 am Post count: 4288]

#1184519

Hello and welcome!

Rituximab is considered an experimental therapy for TED. One study overseas showed great results, but another study in the U.S. did not show improvement. Researchers are still trying to figure out the reason for the differing results, although the U.S. group was in general older, had higher antibody levels, and did not get diagnosed as quickly.

There are cases where patients with Hashimoto’s thyroiditis (which causes hypothyroidism) end up getting diagnosed with Graves’ disease years later. In other cases, patients with Graves’ disease can end up flipping hypo.

In terms of deciding whether the disease is stable, some doctors rely on antibody tests (like TSI), but in most cases, doctors will rely on whether your double vision is improving, worsening, or stable. Doctors like to see a few months of stability before doing surgery, as they don’t want to put you through a second surgery if the eyes change again.

TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more hormone or to put the brakes on thyroid hormone production. The amount of TSH produced generally depends on a “feedback loop” according to where our thyroid hormone levels (T3 and T4) are. When T3/T4 are too high (hypER) the pituitary shuts down production of TSH to try and tell the thyroid to stop producing extra hormone. When T3/T4 are too low (hypO) the pituitary cranks out TSH to get the thyroid to produce MORE thyroid hormone. (With Graves’, the feedback loop can be interrupted, with TSH staying suppressed, even though T3/T4 are in the “normal” range.) Although thyroid eye disease can occur at any time – even with no thyroid dysfunction or years after treatment – being hyper or hypo does increase the risk of eye issues. So this is why your doctor is running blood tests – and hopefully he/she is working with you on getting your levels balanced.

You might be interested in checking out the GDATF’s videos on YouTube, as there is a lot of great information on thyroid eye disease presented by experts in the field:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.youtube.com/user/GravesAndThyroid/videos

You might also check out the “Men With Graves’ and TED” thread towards the top of the forum.

Take care!

[mojon July 11, 2016 at 11:59 am Post count: 25]

#1184520

Thanks so much Kimberly for the reply, information and the opportunity this message board provides.

I knew the Rituxamab was experimental. My cancer doc says he uses it everyday and he provided me some articles by U. Michigan (Kellogg Eye) showing possible benefits. I did find other studies saying it didn’t have any benefit. Insurance didn’t cover it. I think Genentech may actually provide it, but I had to pay up front $5,000 each dose ( X 2 ). That was 1-2 months ago. I notice the swelling went down and conjunctiva (red in the eyes), but the double-vision keeps coming.

I will read and study the info you’ve given me on the Thyroid tests so I can understand this better. I will also check out the GDATF videos.

Any info on GD people/groups in Missouri?

[Liz1967 July 11, 2016 at 12:11 pm Post count: 305]

#1184521

The double vision is hard to tolerate but eventually the eye disease stops and there are surgeries to improve things. I had double vision for nearly three years and just had muscle surgery that has fixed the double vision in straight ahead and reading gaze, will always be double to the sides. Do you still have a thyroid? You said it stopped working but not sure if you had surgery or radiation to the thyroid. Be sure you have ophthalmologists familiar with Graves. I saw a neuroophthalmologist, strabismus surgeon and oculoplastic surgeon in addition to general ophthalmologist and have had a variety of surgeries, steroids and radiation. As far as the tests, I had a thyroidectomy so I only pay attention to my TSH, which keeps me at an optimal Synthroid dose. Without a thyroid, you can never be hyperthyroid unless you overdose on Synthroid! With a thyroid, the FT4 becomes important as the TSH is often so low it is not detectable. Best advice is find most experienced doctors you can. This is a difficult and perplexing disease and the eye component is ever more poorly understood.

[KimberlyOnline Facilitator July 11, 2016 at 5:28 pm Post count: 4288]

#1184522

mojon wrote:

Any info on GD people/groups in Missouri?

Hello – The GDATF is *very* small, so we only have a handful of in-person support groups, and we unfortunately don’t have coverage in Missouri. This forum is a great resource, and we are also active on Facebook (if you do a search on Facebook for GDATF, that will pull up our page).

[mojon July 11, 2016 at 6:53 pm Post count: 25]

#1184523

Thanks Liz for the reply and information.

Wow! So you had double vision for 3 years before getting the surgery? That sure seems like a long time, but maybe it took that long for things to settle down? I am encouraged that you were able to correct the double vision, if only straight ahead. That would be a real improvement for me.

I never had surgery or radiation for the thyroid. I was hypothyroid (Hashimoto’s) for many years. My doc told me that my thyroid just wasn’t much working anymore, and levothyroxin worked fine with no problems.

I am slowly figuring out what some of these eye doc specialists are. I have some helpful general opthalmologists that I see, but the guy that is in charge of figuring out if/when you need eye surgery is ready to retire and almost non-communicative. Tomorrow I am going to see a young doc who is supposed to take his place. They say she doesn’t mind talking with, and helping people. I plan to ask what experience she has with GD and what she might do to help me make the necessary connections in these specialties that have a good reputation. I have written down the specialties that you mentioned so I can ask about them.

Thanks again!

[mojon July 11, 2016 at 8:01 pm Post count: 25]

#1184524

Just viewed a few of the videos. My goodness! I did not expect anywhere near this good information. This is fantastic!

Thanks.

[snelsen July 11, 2016 at 8:49 pm Post count: 1909]

#1184525

Mojon I agree with all Liz said, and I had similar experiences. “I saw a neuroophthalmologist, strabismus surgeon and oculoplastic surgeon in addition to general ophthalmologist and have had a variety of surgeries, steroids and radiation.”

Definitely true to find the docs she mentioned. I did not wait that long for my strabismus surgery for double vision. I had double in every direction except looking straight down at my shoes. I also chose a thyroidectomy. My eye symptoms, TED appeared decades and decades after my Graves!

I did have Rituxamab. Insurance covered it. Did not help or make a difference.

Kimberly provided a lot of solid information for you. Just be sure to determine that the surgeons you chose have done a large number of the procedure you are having. You will find that many endo and eye docs do not understand Graves. Keep going until you find the right folks.

The videos are great, glad you watched them!
Shirley

[mojon July 11, 2016 at 10:06 pm Post count: 25]

#1184526

Thank you snelsen. I have read several of your posts and they are most helpful and informative.

[Liz1967 July 12, 2016 at 4:16 am Post count: 305]

#1184527

My eye disease burned out after a year, but the wait was mainly due to complications from the orbital decompressions. I had some nerve damage causing worse double vision. I had to wait months as the nerves healed, the double vision improved and finally stabilized. You never want to do surgery in this disease while things are changing, either from active disease or postoperative complications. That is part of the reason finding the right doctor is so vital. I actually went to Kellogg Eye Center at the University of Michigan as they specialize in research and treatment of Graves. It was worth the five hour drive. If you are near St. Louis, you might be able to find expert care like at Barnes through the University.

[snelsen July 12, 2016 at 7:18 pm Post count: 1909]

#1184528

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!

[mojon July 12, 2016 at 8:56 pm Post count: 25]

#1184529

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.

[mojon October 10, 2016 at 8:37 pm Post count: 25]

#1184530

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

[mojon October 26, 2016 at 7:41 pm Post count: 25]

#1184531

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!

[Liz1967 October 27, 2016 at 4:42 am Post count: 305]

#1184532

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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