Stability

I recently received some good news. I had a yearly eye exam and a 6 month follow-up with my endocrinologist. Both of those visits were positive. My labs are stable. My eyes are stable. I do not have to see either doctor for a year. It only took me 5 years to get here.

The journey to now

The years it took to stabilize felt really long and sluggish. If I am being totally honest, there were many days when I wondered if I would even get to where I am now. Time dragged on. The moments when my symptoms were really bad, I questioned if I would ever get over it.

The double vision was the most frustrating one of all. It could be unpredictable and I never knew how long it would last. I would be trying to read, write, or do anything, and the double vision would stop me in my tracks.

Over time, I learned what to do when it would come on. It would not stop the symptoms but it would make dealing with them a little bit easier. I learned how to accept it, mentally anyway.

Symptoms fade away

About 2 years into the disease, in the summer/fall of 2020, my symptoms began to let up. My double vision faded away over the summer. By fall, I could take off my prism on my glasses. I have not had to put it back on since.

My depth perception issues were the most persistent symptom I dealt with. Three years into the disease and I was still running into things I knew were there but did not see. But by the start of 2022, this symptom was gone too.

Thyroid stabilization

Around the time my symptoms were improving, I began to take a lower dosage of Synthroid. The dose I was on when I was diagnosed with thyroid eye disease (TED) was too much for me so my endocrinologist took me off to allow my body to chill out.

I was off it for a few months then it was slowly introduced back into my system, this time at a lower dose. I have been back and forth for the last 4 years or so, trying to find the right amount that would work with my thyroid.

Finally, after many trials and errors, my endocrinologist and I found a dosage that my body responds well to. The every 3 month visits slowly got pushed out to 6 months. Then 6 months finally got pushed to a year.

I teared up when my endocrinologist told me she felt comfortable not seeing me for a year. I never thought this day would come.

Off the roller coaster

The years of hits and misses with my thyroid have been a journey. My TED made my journey even more complicated. Not wanting to upset my eyes even more, my endocrinologist, TED doctor, and I had to tread carefully through weeks and months of unstable eyes and inconsistent symptoms.

That turned into years of this disease. But finally, I can proudly and confidently step off the roller coaster this disease can put you through, knowing I have made it to the other side.

Have you experienced stability in your thyroid eye disease journey?

We would love to hear more about your experience as your symptoms stabilized in your TED journey, or share where you are in your journey currently and if you have questions for others. Click the button below to share your story with the community.