My Questions for Our Community Members

I am a team member for this community, I respond to your questions and concerns as you navigate through the challenges of having thyroid eye disease (TED). But the truth is, I do not have all the answers. As I follow many of you with interest and concern, I realize how much I have learned from you! This is why I am appealing to you, as members of this community, to answer the many questions I have. Let's bounce these questions off of each other.

My questions for YOU as members of this TED community

How has mainstream media helped the diagnosis process?

I find myself wondering what it is like for people today who are recently diagnosed with thyroid eye disease. Since my diagnosis in 2019, there have been so many commercials on TV about TED. These commercials talk about the painful, red and itchy eyes being symptoms of something more than just dry eyes...it could be THYROID EYE DISEASE.

I've been thinking that if these commercials were broadcasted back then, my search for a diagnosis could have taken 2 months instead of 2 YEARS!  For 2 years I was told the symptoms I complained of were due to dry eyes, allergies, makeup, my age, sun sensitivity and of course my imagination! I am hoping that these commercials have brought awareness to not only patients struggling with the eye symptoms, but to the doctors hearing theses complaints.

It would be fun to hear from any of you in our community! How long did it take for you to get your diagnosis of thyroid eye disease? When you saw the commercials on TV, did you suspect you had TED? Did you feel the initial doctors you were seeing understood your symptoms and took them seriously? How many diagnosis's did you get before your TED diagnosis? Chime in here please! It would be encouraging to hear that TED is now on the radar when the symptoms are being presented to your doctors. 

Treatment: When did you start? How is it going?

When I finally got my diagnosis, I had to wait another year for remission, before my TED specialist felt he could prescribe TEPEZZA as a treatment. You can imagine how desperate I was for any kind of treatment after being in the active phase for 3 years!

My eyes were a mess and quite frankly, so was I! That is a long time to have retracted eyelids, bulging eyes, double vision dryness and pain!

To those of you who have gone the TEPEZZA route, did you have to wait for remission or was it prescribed while your eyes were still active? If any of you did start treatment while still in the active phase, did your eyes stabilize? If so, how many infusions did it take for remission?

It would be encouraging to hear success stories here. For those of you who have not reached that level of comfort with your eye disease, please chime in here too. I know that with this disease, what works for many does not work for all.

What doctors do you see?

When I finally was in the care of a TED specialist (orbital and ophthalmic plastic surgeon), I finally felt understood and could trust that the care I was getting was the best for me. I know many others have said the same yet I know that not everyone lives in an area where this kind of care is available.

I have also heard that some have felt most comfortable with treatment from their general practitioners. I am willing to bet that most of our members are seeing a TED specialist. Am I wrong?

What impact did TED have on your family?

The question I am about to ask is quite personal to me.

I am curious because looking back I realize I tried to protect my adult kids from how terrible this disease really affected me. As worried as I was about my symptoms, I didn't want them to worry. Being the matriarch of the family I felt a need (however ridiculous) to appear stable and healthy. When I looked in the mirror, I looked frazzled and worn and I realized that was exactly what they saw when they looked at me. There was no stoic smile that was going to hide the truth.

When I shared the truth about TED and how difficult some of my days were, I realized it gave them permission to ask questions and express their concerns. Did any of you in this community "fake it" like I did? Did any of you educate your family members about TED soon after your diagnosis? What worked best for you and your family?

Eye drops all the time?

I'm ending this article on a lighter note, but this question truly plagued me throughout all three years of the active phase of TED.

Those eye drops! I swear that I could empty a whole bottle of those drops in my eyes and get NO RELIEF! Does anyone else feel the same?

What questions do you have?

My thanks to all of my community members who take the time to respond to my questions. Also, feel free to advise me on anything I have not asked. Sometimes I don't know what I don't know.