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October 17, 2018

Overcoming the Grave

By Blue

I was 9 years old when I was diagnosed with Graves’ Disease. My mom and aunt first noted physical changes when I was visiting my grandma in Arkansas. They noticed that my eyes were bulging, my throat was getting swollen, and that I wasn’t acting like myself. Knowing that something was wrong, we decided to visit a doctor. A series of tests revealed that I had Graves’.

Receiving this diagnosis was a shock for my entire family, because we had never heard of the disease before. Hearing that you have a disease is scary, and I was afraid to tell others about my condition. Will other people notice my changes? What will they think of me? It is challenging to explain Graves’ to most people, and sometimes I didn’t even know what was going on myself. The side effects of hyperthyroidism impacted my performance at school. I’m normally a straight A student, but my symptoms worsened and made it hard to focus in class. I felt tired all the time, my hands began to shake, and I experienced headaches and stomach pain. Most people at school did not understand my condition, and this created an isolating feeling.

My family moved to California in the middle of 5th grade, and my symptoms worsened due to the additional stress that come with moving to a new area. Some of my peers bullied me for my appearance. Looking back, this was one of the most trying times of my life. It was difficult coping with my symptoms, but I continually reminded myself to stay positive and be brave. When we moved to California, I began to visit my pediatric endocrinologist, Dr. Harvey Chiu. Dr. Chiu is amazing, because he explained all the different options and guided my family and I along the entire process. Switching over to him has been life changing, and I don’t think I would be where I am today without his help. Dr. Chiu takes the time to get to know your condition, and he even remembers my name.

The first line of treatment I received was medications, which had to be taken every day. Adhering to the medication regimen is essential – if you don’t take it as prescribed, things will get messed up. We had to continually work with the doctors to adjust medication dosage, because I had a difficult time regulating my thyroid hormone levels. I tried radioactive iodine treatment, but that did not work either. We had run out of options, so we decided on surgery. At first, surgery was totally off our radar, but my thyroid was 10x larger than usual, which made other options not feasible.

I received surgery in May 2017 with Dr. Michael Yeh. I remember being both nervous and excited - the idea of a knife near my throat is scary, but I was looking forward to getting my thyroid removed. Taking care of this problem meant that I would be able to partake in many of the school activities I had missed out on. I spent the summer recovering and adjusting to symptoms of hypothyroidism (because the thyroid is removed, I now had too little thyroid hormone). While hypothyroidism has its own struggles, this is the best I have felt in a long time. With hyperthyroidism (Graves’), I couldn’t run around because my heart would race too fast. Now, I can go back to my old life, which include participating in track and playing basketball.

Throughout this process, I always made an effort to not let the disease control my life. Having my family and my close friends along my side helped me get through this difficult period. I would advise anyone who is going through a similar situation to find a good support system. It can be difficult to open up about this condition with others, but being able to talk to people helps tremendously. It is okay to let people know what’s going on. Stay strong and positive through it all, because negative thoughts will just hurt you more.

Tags: Dr. Harvey Chiu, Dr. Michael Yeh, Endocrine, Endocrine Surgery, Endocrinology, Graves’ disease, hyperthyroidism, hypothyroidism, medications, patient stories, pediatric endocrinologist, Pediatrics, radioactive iodine treatment, surgery, Surgery, thyroid hormone levels, UCLA Endocrine Center, UCLA Endocrinology

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