A close up of a desert scene with cacti is reflected in a blue eye.

Early Symptoms of TED and My Journey for a Diagnosis

Last updated: January 2023

I stopped saying, "my eyes hurt," after seeing three optometrists and my general practitioner multiple times, only to get no answers and at times even being dismissed. Let me take you back to the beginning of my thyroid eye disease (TED) journey.

My early symptoms and signs of thyroid eye disease

My first symptoms were dryness and pain in my eyes. As these symptoms persisted, I became aware of how often I was trying to control my surroundings in so many ways, such as..."Can you turn off the ceiling fan? My eyes hurt." "Let's get out of this store! The lights in here hurt my eyes." "I'm going to order all of my books in the audio version. Reading hurts my eyes." "It's too sunny outside and that hurts my eyes." "It's too windy outside and that hurts my eyes." "It hurts my eyes to open them in the morning." The pain was chronic and my complaints were chronic, so my journey for a diagnosis began.

Looking for a diagnosis

The first optometrist brushed me off with his flippant, "There's nothing wrong with your eyes. It's your makeup!" First of all, I had been wearing makeup for years and never experienced any sensitivity. Secondly, I would not have searched for an optometrist if there was nothing wrong with my eyes. I left that appointment feeling dismissed. 

The first seed of self-doubt was embedded in the back of my mind, but my eyes hurt so I brushed it off and went to another optometrist. After a routine examination, he kindly advised me that my eyes were fine but blue eyes can be sensitive, so wear sunglasses. He did not know I had already invested in several pairs of sunglasses and wore them outside and, 'self consciously' IN THE HOUSE TOO! That little seed of self-doubt dug in deeper. But my eyes hurt so I stubbornly tried the third optometrist.

He believed me! That alone gave me hope. In an attempt to relieve the pain and dryness he inserted some punctal plugs; tiny medical devices to help prevent tears from draining to help keep the eyes moist. After a few more visits with this doctor, he removed the plugs and humbly told me he didn't know what was going on with my eyes. I appreciated his efforts but the self-doubt grew stronger.

Self-doubt

Was I just a chronic complainer? Was I exaggerating the pain? Is it true what some doctors said, that dry eyes is just part of the "normal" aging process and everyone goes through this? So I stopped saying, "My eyes hurt."

It became my daily secret even mixed with a tinge of shame. I told nobody that I had to manually open my eyes in the morning by slowly pushing my eyelids up with my fingers...and dare I even acknowledge to myself that it hurt!

Be your own best advocate

Those of us struggling with TED know the symptoms can get worse! It is best to have an early diagnosis and get help treating the ongoing and worsening symptoms. With a diagnosis also comes the acknowledgment of what we are going through. In my next article, I will share with you my continuing phase of symptoms and how I finally got diagnosed. In the meantime, do not dismiss your symptoms even when you feel dismissed. Believe what your body is telling you and be your own best advocate!

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