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How my Life Was Hijacked by Graves Disease and Thyroid Eye Disease

Why can’t Happiness be in my Vocabulary? It first started with Graves’ disease. My symptoms became most apparent during my only child’s last two years of high school. Overcome by feelings of nervousness, muscle weakness, heat sensitivity and shaky hands, the symptoms were beginning to change how I interacted with the world around me. My […]

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Why can’t Happiness be in my Vocabulary?

It first started with Graves’ disease. My symptoms became most apparent during my only child’s last two years of high school. Overcome by feelings of nervousness, muscle weakness, heat sensitivity and shaky hands, the symptoms were beginning to change how I interacted with the world around me.

My “new” normal was starting to wreak havoc on my relationships with family and friends, too. I was becoming increasingly withdrawn and easily agitated. My daughter’s typical teenage remarks were causing me to become infuriated, when I would have previously shrugged them off. My actions were becoming impulsive and out-of-character, and this was when I knew that my personality, my emotions and my health were out of control.

The turning point came when I was reading to my Kindergarten class. Halfway through the book, I began experiencing shortness of breath and a racing heart, beating faster and faster, until I felt like I was going to pass out. I had to excuse myself and my co-workers immediately asked me to go see my physician.

It was during this visit that the pieces finally came together. My doctor completed a routine examination and ordered blood work. When the results returned, I was shocked and confused to learn that I was diagnosed with Graves’ disease. Well, shocked is putting it mildly because I didn’t even know what Graves’ disease was! As I would later learn, Graves’ disease is an autoimmune disorder that causes the thyroid gland to become overactive and produce an excessive amount of thyroid hormones, which are responsible for regulating vital bodily functions like metabolism, breathing, heart rate, body temperature, cognitive emotions and more.

After I was diagnosed with Graves’, I was immediately referred to an endocrinologist. To quickly get my overactive thyroid under control, I was ordered a treatment of Radioactive Iodine (RAI).

I recall meeting with the radiologist like it was yesterday. He showed me a cement container, gave me directions to drink it and immediately left the room. This was only the beginning. There were lengthy post-treatment instructions, such as requirements to stay away from children for a minimum of 10 days (which meant missing work as a teacher) and sleep in a separate bed from my husband. At the time I had no clue about the effects of drinking the iodine and the long-lasting, destructive impact it would leave on my body, including my teeth, skin and hair.

As if things couldn’t get worse, in addition to my other symptoms, I was experiencing severe eye symptoms, including my eyes starting to bulge and turn inward, excessive eye twitching, double vision and weakening of my lower eyelids. I assumed these symptoms were part of Graves’ disease, but I came to learn these were symptoms of a separate disease called Thyroid Eye Disease (TED) that occurs in up to half of Graves’ patients. The disease was painful and scary as a I literally watched my vision and outward appearance slip away. Driving was not an option, work was increasingly more difficult, and my whole life came to a bleak and lonely halt.

I was referred to an ophthalmologist for eye decompression and eyelid retraction surgery. Despite my fears, I had the surgery and endured the recovery, but not without tremendous physical and emotional challenges. For weeks after surgery, I remained on the couch, nauseated, unable to watch TV, or take a bath by myself, among all the other day-to-day tasks that we take for granted.

I retired from teaching, the job I loved, increasingly self-conscious of my appearance and tired of people commenting on my eye twitches and constantly asking, “Why do your eyes keep doing that?” “Can you see when your eyes do that?”

Today, my vision has improved but I still don’t feel the same. My experience with TED has left permanent scars on my confidence and eyesight.

Despite my long and ongoing battle with Graves’ disease and TED, I often ask myself: How do I make meaning out of my experiences? I want the answer to be that I might shed some light on the diagnosis and experience of living with Graves’ and TED to help someone else going through it.

I hope that by sharing my story, others who suspect they may have symptoms of Graves’ or TED will seek out a specialist to discuss these possible thyroid conditions and treatment solutions. I can’t stress enough the importance of doing your research and asking questions.

By sharing my story and encouraging others to do the same, I hope that our medical provider community will become more educated and aware of the symptoms that accompany these diseases so they can have more answers and empathy. For them and others to truly understand the lifelong impact that these conditions have on our body would be a blessing. That is what I am fighting for.

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