Tell us about your symptoms and treatment experience. Take our survey here.

A hand is cranking the lever on a jack-in-the-box. There is a question mark on the front and a mysterious light shining out of the top.

Back to the Beginning of Graves' Disease and Thyroid Eye Disease

I have spent a fair amount of time talking about thyroid eye disease (TED), but I do not think I have talked enough about Graves disease. My Graves’ disease diagnosis was how everything started. I was not officially diagnosed with TED until a while after my Graves disease diagnosis. So, let’s start from the very beginning.

How I felt at the beginning of this journey with Graves' disease and thyroid eye disease

I was in my early to mid-twenties and I was always tired but thought nothing of it because who isn’t tired from the hustle of trying to make something of yourself in your 20s? I started noticing differences that I had not noticed before. I was rapidly losing weight. I mean, I could literally eat anything and I was just not gaining any weight at all. My eyes were protruding out. My eyes also had this extremely tired feeling, almost like the muscles in the eyes were just tired and needed a break. It was one of the weirdest feelings ever. I remember I felt my heart racing a lot and I also had anxiety that was next level. My moods were not the best either, (ask my family). My mom started noticing that I had a lump in my throat, and she could see it when looking at me. I think you can imagine what happened next. I went to the doctor, got blood work, and was diagnosed with Graves' disease.

What I still find crazy is that I did not even know what a thyroid was or did. I had no idea how much it could affect, which, by the way, is a lot. Maybe that was a sign that it was not talked about enough. Since it affects so much, I wish that I had known about it prior to my diagnosis. Besides coming up with the right course of action, I was put on beta blockers. One minute I had no idea what a thyroid was, and the next I was going to all these doctors' appointments for my thyroid.

In denial

Graves’ disease is scary. First off, the name alone is scary, especially when you have no idea what a thyroid is. Second, coming to terms with a disease that you didn’t even know existed is such a weird feeling. There is so much information for your brain to absorb and you just don’t know where to start or what to think. You want to hop on the internet and read every article you can about it because now it is part of your everyday life. At first, I was most definitely in denial. I did not understand how serious it was or what could potentially happen if I didn’t take care of myself. As I said before, I had absolutely no idea what a thyroid was! So why would I be fully on board right from the beginning? That diagnosis truly changed me. Getting diagnosed with a disease you didn’t know existed makes you take a step back.

It makes you slow down and realize that it is so important to pay attention when your body is feeling off.

Do you have a thyroid eye disease (TED) and/or Graves' disease story? Click the button below to share with our community!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?