Diagnosed with Graves’ Disease
My initial Graves’ disease diagnosis
I was married one year and eight months, basically still newlyweds. We had recently moved into an older house back in E’s hometown. We both started new jobs working in retail, we tried to make memories the best we could and trying to keep everything together. We were chasing dreams.
The first symptoms
Working long retail hours during the busy holiday season made it easy to brush off the swollen ankles. At night while watching TV, I would occasionally hear and feel my heart beating inside. But again, I brushed it off. I was helping set up a new store in town and my mom came to visit. When she saw my ankles, she immediately insisted that I go to the family doctor.
My brother was diagnosed 6 months prior. I sat in the car with thoughts running through my head - but I changed my diet. I made the switch to "healthy choices." Yoplait yogurt. Brown rice. Whole grain pasta. Drank more water. Daily waffles with peanut butter for breakfast or frosted mini wheats. Almost everything made at home. The Standard American Diet. But I was active - hiking, running and working out.
the call from the doctor’s office
After blood work was taken, a few days later I received a phone call. It was a warm spring day with blue skies. E had just left to go riding four wheelers with his brother and dad. When I saw the doctor's office appear on my cell phone. I froze. I didn't want to know. The nurse on the other line said: "I'm calling to let you know that the blood work is positive for Graves' disease."
That day, I managed to hold all emotions inside and be strong. After hanging up the phone, I paused. I wanted to tell E but I knew that it would truly become a reality then. "Be strong. Be strong. Don't cry." I dialed his number. I had all intentions of not crying but the minute I spoke, it all started. Up until that point, I felt like I knew what strength and courage were but that day they were tested. I felt vulnerable. You see, I was the girl that was tough, that didn’t cry and often held more emotions in possible - pushing forward tucking everything inside.
That day I had a good support system, E came home immediately and showed up with flowers. My parents dropped what they were doing and drove to be with me that day. Who would have guessed the journey I was about to go on?
The first endocrinologist
There I sat next to E in a stark white room, waiting to meet my endocrinologist, sitting on a hard plastic chair. I was quiet. I was afraid. This was the day of my first appointment with my endocrinologist, and the day my world was completely changed forever. She would be my doctor. I’ll never forget her face. From the moment she walked in the room, she stood close to the door. After waiting over twenty minutes, my visit only lasted ten. In that ten minutes, she confirmed my diagnosis, quickly explained what it meant and rapidly typed on her computer.
Words spewed out of her mouth, as she seemed to have her “speech” memorized. She was doing one thing, while I was doing another. She never even took notice to the anxiety building inside of me and me fighting back my emotions by gently biting my inner lip. She continued regurgitating medical information. As hard and as fiercely as I fought it, I couldn’t any longer. Tears started to fill my eyes as I held my hands tighter together. Finally, she looked at me and said.
“What’s wrong? People just diagnosed with cancer respond this way. You are not going to die! You only have to take medicine for the rest of your life. Or get radioactive iodine and still take medicine for the rest of your life.”
At age 25, this hit me like a brick wall. How is taking medicine for the rest of your life okay? And the new normal? I have replayed this moment so many times throughout my journey. It’s not so much as what she said but how she said it. Cold and insensitive. Before leaving that day, I intuitively asked one question, would changing my diet help anything? Her reply included something along the lines of, no, nothing can change this!
Although that day was extremely hard, I was thankful for having E by my side.
Ready for the fight
The doctor made me so angry that day and the fighter mode set in. I can beat this! There has to be another way. Through much research, I found several people writing about recovering from Graves' disease by cleaning up their diet. Removing preservatives and following a paleo lifestyle. (It is amazing to me as I'm writing to share my story today in 2019, that in spring of 2012 the first Paleo FX event was taking place and the abundance of information available today was greatly reduced only 7 years ago! We are making progress.) At that point, I didn't worry too much about organic and grass-fed, in fact where we lived that wasn't even an option. I started to purge everything. I cleaned out our pantry of all spices and boxed products that included preservatives of any kind and ingredients that were not okay. The big offending ingredients I avoided - MSG, high fructose corn syrup, natural and artificial flavorings, soy and dairy, dyes or colorings, nitrates and any ingredients that weren’t “common” or you couldn’t pronounce.
6 months later
After six months of being diagnosed and four months paleo, I had a follow up appointment with my endocrinologist and she was shocked. My thyroid labs had drastically improved. My thyroid prescription was reduced and she had hopes that I would most likely go into remission. You know how I celebrated? I indulged in a gluten and dairy filled pumpkin gob (or whoopie pie) at a local arts festival in October. It probably wasn’t my finest decision but I was still new into my journey.
My family was supportive and was also hopeful that I could completely put this behind me and go into remission at a young age.
Highs and Lows of thyroid problems
Although it seemed like I was going in the right direction there were a lot of things still happening to my body. I remember standing in the bathroom and noticing more and more hair falling out. I would mention it to others but they insisted that I always lost hair, "your hair has always been everywhere." All of my life I had thick, naturally curly hair and I did lose hair all of my life but it never seemed as if it did. My weight started fluctuating and I felt myself freaking out in my body. After hitting puberty, I was always a steady 110-112 pounds. I would call my endocrinologist telling the office staff that something didn't feel right and they insisted it was too early to test my thyroid labs. Finally, after being persistent, they ordered more labs and turns out that my prescription needed to be reduced again. I was now on a very minimal dose.
More time passed and my weight went back down. But again, that same fear started to build again inside that was so similar to my hair. Am I losing weight because I'm getting in shape and my thyroid levels are balanced or am I going more hyperthyroid? It seemed to be a chronic question, a paranoia in the back of my head. Thyroid symptoms directly impact our hormones and can takeover our mood, energy levels and our appearance.
A really good year
One year later - 2013. It turned out to be a really good year. A year that we thought would change everything. I returned to running and was working out regularly and started yoga. My husband inspired me to enter my first ever trail race - more like he said I wouldn't do it so I had to secretly prove him wrong. The day of the race, I planned to send him a photo. It was a 5-mile trail race during the muddy spring season. I bought a cheapo watch, tracked my time, logged my miles and was ready. I ended up getting 3rd in my age group. It was exhilarating and I felt proud.
That summer, we took some time off together and traveled to the Great Smoky Mountains for our 3rd anniversary. In four days, we hiked about 36 miles with almost 10,000 feet total elevation change. Mornings were spent drinking coffee on the porch with mountain views, days spent hiking, and nights grilling and relaxing in the hot tub.
In September, I would attend my last art festival with my photography booth and we would move to North Carolina in pursuit of E’s biggest career goal.
By the end of this year, I was completely off my thyroid medication. The new area had more access to organic products and I started to dive into holistic nutrition and living a lot more. Using my spare time to read books, research online, and start to transition our home into a more natural one.