[Kimberly]

#1060292

Hi all – The team at Shiley Eye Center is hard at work on the program for Jan. 25th in San Diego, and they have asked us for some feedback.

What topics related to thyroid eye disease are important to you — and what general questions on TED do you have?

Thanks for your input!

[ChristinaDe]

#1181800

This may not be general enough…but I’ve had trouble understanding if under eye bags (significant swelling going down to the cheekbone that isn’t fat) is a manifestation of thyroid eye disease in some? Seems like some think it is, others don’t. I’ve been told both. But seems like I’ve heard more than one thyroid patient complain of it.

If it is known to be thyroid related, is it treatable? Can a person expect it to resolve when they’ve become stable…or is it one of those things that will require correction later? Since it doesn’t threaten vision, & is not as severe as other eye issues, even cosmetically, it seems difficult to even get docs to discuss it.

But maybe some doctors somewhere have specific thoughts on this?

[gatorgirly]

#1181801

I wish my endocrinologist would have told me about the correlation between post-ablative hypothyroidism and the onset of TED. I was later informed by my neuro-ophthalmologist that if my endocrinologist had not allowed me to become severely hypo after RAI (even though it was only for a few weeks), my TED may have been much more mild or may not have occurred at all.

[PattiMeg]

#1181802

Hi Kimberly,
I would like to know more about the long term prospects for remission after TED has run its course. And, if possible, what steps a person with TED can take to reduce the risk of a relapse. I am 3 years out, with multiple surgeries for lid retraction and severe double vision. Things have been “stable” for almost a year – ie, no worsening of symptoms, no change in proptosis based on measurements made by the neuro-opthamologist. Again, would be interested to hear my chances of relapse and what I can do to avoid it,
I have already made alot of changes; reduced my work hours to 3 days a week; I decided that the stress was very bad for me and have learned to live on less money. I am getting alot of good sleep, practicing meditation on a daily basis, and learning to give up my need for control. So I feel great!! but my darn eyes, boy they are a source of real discomfort.
Patti

[Kimberly]

#1181803

Great questions…I will add all of these to the list. (And keep them coming!)

@PattiMeg – At our San Diego conference in 2012, Dr. Catherine Hwang mentioned that she sees stress as a major factor in TED relapses. So it sounds like you are definitely on the right path with taking steps to manage stress in your life!

[Raspberry]

#1181804

I’d be interested in a discussion of all the non-proptosis symptoms. It seems that doctors have no doubts about it being TED with clear proptosis, but the other symptoms seem to get ignored or attributed to something else. Dry eye, inflamed conjunctiva, eye muscle pain things like that. For me the inflamed conjunctiva and dry eye were my very first symptoms a full year before Graves’ onset. The actual eye muscle pain didn’t start till I was clinically hyper. I went to see the ophthalmologist the year before and he just shoved some Restasis at me and sent me on my way – I didn’t even know to ask if there a thyroid connection back then. Oh and I had a similar milder flare a few years before that and was given some “eye vitamins” and told to go away.

[shakira7]

#1181805

I am with Raspberry, regarding all the non-proptosis symptoms. I’ve seen 2 opthalmologist, 1 internal medicine doctor and 1 endocrinologist. None of them seem to know what is causing my upper eyelids to be swollen. When I searched online, I found a plastic surgeon who does blepharoplasty – for his potential clients, he said that those who are experiencing upper eyelid edema (puffiness), they may need to check with endocrinologist and make sure their thyroid level is stable. So, to me, it’s obvious that this is definitely linked to thryoid, and yet none of my specialists seem to agree.
For me, it’s been 3.5 months that I see a change on my eyelids.
Also, I would like to know if thyroidectomy is supposed to prevent from TED/non-proptosis symptoms getting worse.

Thank you, Kimberly, for offering us to ask questions regarding TED.

[gatorgirly]

#1181806

I’ll third non-proptosis symptoms. My diagnosis came after seeing two separate ophthalmologists who prescribed me very expensive pills and drops for eye allergies and infections that turned out to be TED. I literally spent $100 on eye drops for an eye infection that did not exist. When I saw my endocrinologist a few days later for a scheduled visit, he knew it was on the onset of TED and got me in to see a neuro-ophthalmologist immediately, where I began TED treatment.

[Kimberly]

#1181807

Thanks, all – these questions have been passed on to the docs at Shiley for their review! Really surprising that SO many people are having difficulty getting TED diagnosed without major proptosis or double vision.

If you think of any further questions, please continue to post them here!

[Raspberry]

#1181808

Sorry you guys have had the same trouble – I’ll sure be interested to hear what the Shiley folks say. Kimberly, for those of us who can’t go to the conference will there be videos?

I just thought of another question….

Does TED act differently when a person is hyper vs. hypo?

[Vickie]

#1181809

I would like to know if there have been any recent developments regarding selenium supplementation as treatment for Graves Eye Disease. I had been taking selenium for two months but had to discontinue since I am now enrolled in a clinical trial.

[Kimberly]

#1181810

@Raspberry – We hope to have video, but this has not yet been confirmed. Will definitely keep everyone posted!

[phuffman39]

#1181811

I would like to know about the resolution of TED. Once thyroid has been stable and antibodies have returned to normal (none) does the tissue around eye- between eyelid and brow bone and under eye bagginess – ever revert to the way it was pre TED or is surgery necessary? I took PTU for almost 2 years and just received my first negative antibody report and I know eyelid retraction must be treated through surgery but want to know what to expect concerning tissue swelling…as it is still pronounced! Thanks for taking our questions!

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