Six months into my thyroid eye disease (TED) journey, I was diagnosed with another eye condition called keratoconus. I needed to get some more imaging done of my eyes that my regular TED doctor could not perform. I was sent to another office nearby that could look closer at my eyes. There I met with an eye doctor who I had never met before, who told me I had this cornea condition that I had never heard of before.
I was quite literally shocked. No one had told me this before. Yet another thing added to my plate that was already too full because of TED. I was in disbelief during the appointment. I kept on saying, no, I’m here to look at my eyes because I have TED and he kept on insisting I have keratoconus, too.
Similar symptoms: Keratoconus and TED
I was told so many different reasons about my corneas that I frankly do not remember because I was not processing anything he was saying. Keratoconus and TED have a lot of the same symptoms, like double vision, irritation, and light sensitivity. The eye doctor told me we wouldn’t know which symptoms were from which disease until the TED goes down. I was confused because I didn’t have any of these symptoms until I developed TED.
The eye doctor kept on going on about how I should have a prism in my glasses lens for my double vision. I tried to make the point that I was told the double vision was temporary and that I didn’t see the point in making a big change to my glasses if I wasn’t going to need the prism in my glasses for a long time.
He also mentioned how one day, I might need hard contacts to control my keratoconus if it impacted my vision more than it already had. I was very opposed to that reality. The idea of contacts, in general, freaks me out. To put anything at all in my eyes doesn’t seem pleasant, nor is my eyesight that bad to need contacts. When I expressed my concern, he kept pushing it anyway. He didn’t listen to me, which caused me to stop listening to him.
Rubbing my eyes
The only thing he said to me that stuck was that I should stop rubbing my eyes because it could make the keratoconus worse. I loved rubbing my eyes. I was a huge eye rubber throughout my entire life. It felt so good. When I developed TED, I would do it a lot to relieve my irritation. It wouldn’t make the itch go away completely, but it would settle down when I really got in there. The day I was told my eye rubbing may be a factor in causing my keratoconus, I stopped completely.
For the past three years, I haven’t really worried about my keratoconus. Whether that’s a good choice or not remains to be seen. I am proud to say I haven’t rubbed or touched my eyes once since that day. Since my TED symptoms have faded, really, the only symptom that has stuck around is my dry eye, but I’m so used to having dry eyes that it’s not out of the ordinary for me at this point.
The impact on my eyes
At my last eye appointment with my regular eye doctor, I asked to have the normal cornea scan done that I have had in the past. My corneas haven’t changed since I was told I have keratoconus. I have mild but stable keratoconus in both eyes. This was the first time I was told mild and stable. It felt really good to know that the overwhelming concern I felt three years ago hasn’t turned out to be what I was silently fearing.
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