Patients Who Had TED for Years Before and After TEPEZZA Treatment

Kim: I'm Kim. And this is my journey with Thyroid Eye Disease.

When I was 17, I started to get really tired, and my mom was worried about me, so she took me to the doctor to have me checked for Mono. And the doctor did the blood work and said, you do not have Mono. I think it's just growing pains and kind of just sent me on my way.

And then I went to college where I was recruited to play volleyball and run track. When I went to the volleyball camp before the season, the coach called me into the office and she looked at me and she said, “You play like you're sick, I'm cutting you.” And I was devastated.

So, I went to a doctor on campus and he basically told me I was a hypochondriac.

My uncle is an ophthalmologist and he looked at me and said, ”Oh my gosh, you are so sick.” My uncle got me into an endocrinologist, and he said, “You have Graves’ disease and you need treatments immediately.”

So, I started radiation treatments. Once that was stabilized, my eye symptoms started to get worse. And my uncle at that time said, “You have Thyroid Eye Disease and it is independent from your Grave's disease.”

I had the tightness in my eyes. The bulging. And they kept getting worse and worse as time was going on. My eyelids wouldn't close. So, I was putting night eye ointment in all the time. I was using drops constantly, so I always knew my eyes were there. So, they got me into a ocular plastic surgeon and I had my first Levator surgery.

That took care of the major symptoms. But I was still using the eye ointment at night. I was still using drops.

I could drive during the day, but nighttime no, everything, all the lights were double.

You just kind of learn to live with those symptoms and move on because you think there's nothing you can do anymore. So, I thought this is just how it was going to be.

You just aren't comfortable anymore with yourself in your own skin and everything bothers you. I didn't want to really be around people. I didn't want to go to events. It got to a point where I didn't want to be out in public because people would look at me and I knew they were looking at my eyes.

Discovering TEPEZZA

After 25 years and four surgeries I said to my optometrist, I need some help. So that’s when she recommended that I see an oculoplastic surgeon and the new oculoplastic surgeon said, “Hey, there's this new medicine out called TEPEZZA. I think before we do any more surgeries on you, you should try it.

I had told her I saw the commercials and I said I didn't think it was an option for me because I thought I had to be in that bad phase with all those bad symptoms I had before.

And she said, “No, I’m pretty sure this is going to be it.”

Kim’s Treatment Experience & Results

When I went for my first infusion, I was very anxious.

Then after the second treatment, I got used to everything. And by the third treatment is when I really noticed that the pink in my eyes was gone. And then after the fourth treatment, I noticed the bulging had decreased.

It was exciting to, to see that.

The most significant difference was infusions five through eight. The tightness was gone. I was blinking normally again, and I could sleep without using eye ointment.

When I was done, my eye bulging, decreased three millimeters in each eye, which is a significant difference.

Post Treatment

To see myself now, after this treatment, it's been inspiring and uplifting and healing because I don't think about my eyes every day anymore. I can go about my day being confident and people aren't asking me about my eyes.

When my son got married, I actually couldn't wait to see the pictures. And you see a picture. You don't see eyes.

It's been an amazing experience. If I can help somebody who was in the same stage as I was and thinks they can't do this, they should make sure they ask their doctor, “is this an option for me?” Because I didn't think it was and it's been incredible.

I wish 25 years ago TEPEZZA would have been around because I would have gotten back 25 years of my life of not having to think or feel something constantly every day.