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Questions I Had About TED When I Was Initially Diagnosed (Part 1)

Last updated: September 2022

When I was initially diagnosed with thyroid eye disease (TED), I was overwhelmed. There was a lot of significant change happening all at once with the onset of the symptoms of this disease. I had a lot of questions with no real answers. I did not know what the future looked like nor did I understand what was happening to me at the time. Being on the other side of this disease,  I have the answers to my questions I did not know at the time. This is how I would now answer the questions I had when I was first diagnosed with TED.

Questions I had when diagnosed with thyroid eye disease and how I'd answer them now:

What is happening to my body?

I have thyroid eye disease. It’s connected to the thyroid that impacts the eyes. It’s what’s causing my double vision, light sensitivity, retracted upper eyelids, and many other new things I am experiencing. It’s new and overwhelming and you have every right to feel the way you do.

I have Hashimoto’s, not Graves'. How do I have TED?

I do have Graves' disease. I am converting from Hashimoto’s to Graves' disease. It doesn’t happen often but it can happen. Most people have one disease or the other. While I have both antibodies in my system, my endocrinologist says only Graves' antibodies were active when my TED  began. If I google Hashimoto’s and Graves', it says you can only have one or the other. But Google isn’t always accurate, especially with medical things. Listen to my body, my doctor’s, and my blood work numbers. They will be more reliable than a search engine.

Why do my eyes look different all of a sudden?

It may seem like a sudden change but really my eyes have been changing long before I noticed them. The change in appearance in my eyes had been gradual and subtle. Looking back at photos months prior to being diagnosed, I will see the changes under my eyes started to form before I was aware of what was happening. Even when I noticed the change in appearance, my eyes didn’t change vision-wise because of the swelling for another month.

Why do I have double vision?

Thyroid eye disease causes swelling around the eyes. My eyes are being moved out of their usual spot which causes them to not be on the same level which leads to double vision. My left eye is sitting more up and forward while my right eye is back and down. Over time, as my eyes move and switch, so will the double vision.

Why is everything so bright?

Eye swelling causes my eyelids to retract. The retraction of the eyelids causes my eyes to have more light exposure than they are used to. This makes the light around me very uncomfortable and sometimes even painful. The sun is too bright. White light bulbs are the worst. In order to cope with these feelings, I will wear a hat and sunglasses everywhere I go. It will become a part of my daily uniform. I won’t feel comfortable going out in public without them for years.

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