[Stymie]

#1060223

Hi all,

For anyone who has experienced TED. what would be your first symptoms?

I am experiencing some pain in my right eye, as well as a feeling that the tops of my eyes are resting on my eyelid? the part underneath the eyebrow. I don’t know if that makes any sense to anyone.

I’m not sure if this is one of the first signs of TED.? I’m having a migraine today and I’m not sure what to make of these symptoms.

Any help would be greatly appreciated.

Thanks.

Diane

[hollygsmith]

#1181349

Hi Diane,

My very first symptom of TED was swelling under both eyes. Next came redness and irritation in one eye only that came and went over the course of about 2 months. Shortly after that I had lid retraction in both eyes. And very soon after I started experiencing pain and pressure, swelling in the tissues above the eye, and proptosis.

You may want to see an ophthalmologist, if you haven’t already, to address your concerns. I would definitely try to see one that has a lot of experience with TED if possible.

-Holly

[Stymie]

#1181350

Thanks Holly for your reply and information!

I think what im experiencing is either lid retraction in my right eye or swelling in the tissue above the eye. I have had a bad under my right eye since I was in my twenties and over the last couple years it has gotten much bigger. I was just attributing it to old age! lol I was looking at some pictures of TED online and think this is what’s going on. I was just looking for some confirmation of what it feels like.

I went to see an opthomologist last year and he saw no signs of TED, although I think my right eye is progressing. Im not sure If I really liked this guy or not so I may just go see someone else.

THanks so much for your input!! I really appreciate it!

Diane

[barbra]

#1181351

Hi Diane,

You’re laughing about the “old age thing” but that’s exactly what the ophthalmologist told me a week ago. He said there is no sign of TED. I have dry eye and he gave me some eye drops.
I have some of your symptoms like the tops of my eyes resting on my eyelids, bags under my eyes, no pain but irritation. Also, there is some discoloring right under my eyebrows that looks like pink make-up.

I hope that your diagnoses from the ophthalmologist is also not Graves’ related.

Hugs.

Barbra.

[autogal2013]

#1181352

My first symptoms were just what you explained, pain in the eye. With me it went from one eye to the other, then it affected both of my eyes. I have extremely dry red irritated eyes that feels gritty all the time regardless if I use eye drops etc. Shortly after that I started to experience the eyelid retraction. I wake up every night with watery eyes, you would think I woke up crying, nose running.

[Stymie]

#1181353

Barbra thanks for your reply. I was at the opthomologist early in the year and he saw no signs of TED. I hope now when I go back he will say the same thing. I’ve been using tons of creams to reduce that bag under my eye to no avail. I have no discoloration just this weird feeling that my eyebrow is sitting on my eyelid!! Frustrating.

Autogal if you don’t mind me asking, what does it feel like when you have eyelid retraction? I fear that that is what is happening to me in my right eye.
My left eye all I feel is dryness and eye tearing.

Thanks so much for your replies! It helps me I much! Just trying to figure out ha is going on!

Thanks again!

Diane

[snelsen]

#1181354

Hi, I had an onset of TED around four years ago. Had no idea of anything. My eyes were dry and scratchy ( I live in Seattle, so not dry here.) My vision was changing, but was not sure how. Eyes seemed bigger, more cornea exposed. Eye doc said I needed new glasses. Made no difference. Pretty soon, as I was walking along, looking ahead, things seemed “wavy.” Not long after that, I had to blink a lot, readjust my eyes, when I looked up at the monitor (in a recovery room where I was working.) WEnt to another eye doc. THis is not about 6 months later. He did not really say anything, but prescribed more glasses (which I did not get.) and said, maybe you should see Dr. ………, down the hall. I went in the office, the doc happened to walk out to the desk (oculofacial surgeon) looked at me, said, “I think you have thyroid eye disease, are you here to make an appointment?” I had an orbital CT, there was a LOT of excess orbital fat in the orbit, and the eye muscles were very large (pushing my eyes out so they bulged.) By that time, I had intermittent double vision, later I had it all the time, in every direction, except looking down.
The good news for you is, that there are few people who have TED as severely as I had it.
Shirley

[Stymie]

#1181355

Hi Shirley,

Thank you for sharing your story. It means so much to hear someone else talk about it and give their own personal perspectives. I would prefer that to reading about it in some medical journal or website. So thank you again!!

I made a dr appt with a new opthamologist. Can’t get in to see him til December. Good news is I think it’s very mild at this point. I just want to get ahead of it if that makes sense. Don’t want to wait until it gets really bad to see a dr.

I notice that one eye does look bigger than the other, but if I ask someone they say no they don’t notice anything. So I guess it’s best to get a professional opinion.

Thanks all!!

Diane

[gatorgirly]

#1181356

Hi Diane,

The good thing about your appointment is that even if you don’t have any eye involvement, he can take photos and measurements so that if things start to change down the road, he will have a baseline to compare.

Mine started with significant pain/pressure and actual eyeball swelling and redness and extreme eyelid swelling. First I was told by an ophthalmologist that it was conjunctivitis, then allergies. Nothing he prescribed was working and I was in my endocrinologist’s office finding out I had finally gone hypo post-RAI and he was the one who said, “That’s definitely TED.” and got me in to see a neuro-ophthalmologist the very next day.

[Stymie]

#1181347

Hi gatorgirly!

Thanks for your response! Your comment is why I’m seeking a new dr. ( besides the fact that my eyes are changing) my last dr didn’t take any pictures nor any measurement. So how would he know if my eyes have changed at all from one visit to the next?

Thanks again for your advice and just being here to respond!

Diane

[snelsen]

#1181357

Hi,
I’m so glad gatorgirly mentioned the importance of getting baseline measurements. Over the four years since, I have written about initially getting TED, I have felt this was so very important, and i neglected to mention it to you this time. The exam should include several tests for color recognition. With TED, sometimes the first change with color (that you probably won’t notice right away, or maybe ever, without some of the exam tools, is a change in the color red (not as bright, seems more dull.) If the eye doc thinks you are at the beginning of TED, he/she may or may not do a Humphrey Visual field test (a machine) that test visual fields. Far more sophisticated that the wiggly finger test. One thing that I was very humbled by, is that I did NOT notice the changes in my eyes (a field cut (blind spot) and double vision (was intermittent, and both the doc and myself blamed it on needing new glasses.) IT was not until things got extreme, especially with the double vision, that it was life altering.
I hope you do not have TED,and if you do, most people have relatively mild experiences with it. Scratchy eyes, dry eyes red eyes, and sometimes it all resolves after quite a while. Light sensitivity is another thing with TED. Even now, I must wear sunglasses and a visor.
Shirley

Both of us will be looking for your next post after your visit in December!
Write anytime
Shirley

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