Meeting My New Thyroid Eye Disease Specialist

After having 4 surgeries to treat thyroid eye disease (TED), I did not think that I would ever need to meet a new TED specialist again. However, my regular specialist/surgeon recently went on sabbatical to do important international nonprofit work. Initially, I was nervous about the prospect of not having a doctor available who knew me and my eyes so well - what if something went wrong and symptoms resumed?

Always prepared, my doctor recommended that I see his colleague, and we agreed that scheduling an appointment with her early on would be helpful. We could do a baseline exam, so she would be ready to compare results and observations should I have a new concern.

The first appointment with my new thyroid eye disease (TED) specialist

Preparing myself

As I walked to her office I mentally prepared. I practiced summarizing my very long journey and reminded myself of recent important dates. I have had first appointments with many doctors. Some went well, others did not. Would this doctor be cold and condescending like my first endocrinologist? Or would she be encouraging and bubbly like my thyroid surgeon? I tried to keep an open mind.

Unexpected conversation

I did not quite expect the warmth and sense of kindness that she immediately brought into the room with her. When she introduced herself I noted that both she and my regular TED specialist had similarly calming voices.

“I took a brief look at your chart, but before we do more - tell me about you.” She didn’t even glance at the computer or paperwork on her desk. She looked me in the eyes, listened, empathized, and asked questions. Talking with her felt like talking with an old friend who already knew so much about me. We were both immediately on the same level.

Quite early on she asked about my mental health, and that question struck me in the heart - how I was feeling now that I am on the other side of surgeries and if I had sought out help outside of support groups. We dove into the emotional ramifications of TED, and even though we just met I felt so safe.

I briefly mentioned my advocacy work in the TED and autoimmune disease communities, and she said, “Oh! Tell me more! That’s so exciting and important!” I don’t often feel pride in relationship to my advocacy work. Pride is a complicated emotion for me, especially in regards to a disease that I hate. But explaining it to someone new who was genuinely excited to hear about it and who said again, “Tell me more!” while taking notes of new resources to pass along to other patients - wow, yeah, I do a lot within these communities, and I am pretty darn proud.

An exam and reassurance

Eventually, she did an exam and we both raved about my surgeon's work. I have another appointment scheduled with her in three months, and she assured me that I can go in sooner if I have a concern. I thanked her, and she said, “I’m here for you.”

I left feeling so incredibly seen and walked down the street smiling with tears in my eyes. I felt this way with my regular specialist, too. Why did this appointment feel extra meaningful? Perhaps I just wasn’t expecting to find an amazing doctor twice in a row. Perhaps I’ve been emotionally holding back, trying for so long to keep myself together. Perhaps it was the focus on mental health and the simple phrase “I’m here for you.” Perhaps it was her helping me realize that sense of pride. I am sure it was all of it.

Great TED doctors are out there

I have read (and have written) so many stories about negative experiences with doctors, and I felt like this experience was important to share. Great doctors are out there, and they’re ready to help.

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