Graves’ Disease: Feeling Out of Control in My Body
Trigger warning: This article discusses eating disorders, body image, and weight gain/loss as a symptom of a serious medical condition.
I became aware that something was wrong with my thyroid as I was trying to fall asleep one night. Why did my heart feel like it was rapidly pounding out of my chest? Yes, I had a stressful moment that evening, but I was mostly calm when I got into bed. No amount of breathing exercises helped, and I called my doctor the next morning.
It took several months for me to transition off of a medication I was taking, get an EKG, find a different, kinder endocrinologist for a second opinion, receive my official Graves’ disease diagnosis, obtain the correct medication, and finally start navigating treatment.
Those months were incredibly scary. With a resting heart rate of 120 bpm (normal is about 60-90 bpm), forget exercise – I was scared to bring my heart rate up too high by doing simple activities like walking up the stairs. My body was practically running a marathon while sitting down. I decreased my physical activity and focused on resting.
As a fitness instructor, I was grateful that I didn’t have any cardio classes on my schedule that season, though during barre and yoga classes, I had to be very conscious of my breathing. During each hour-long class, I talk continuously, and if I spoke too fast and forgot to breathe often enough, I could feel my heart rate increasing. Constantly monitoring my heart rate took a lot of emotional energy, and even when I found time to rest my body and mind, I couldn’t escape the persistent pounding of my heart.
With the rapid heart rate came the shaky hands. I felt so embarrassed and immediately became self conscious every time I needed to sign something or film a video – my hands couldn’t hold a pen or camera steady. People would stare at me and it was hard not to wonder what they were thinking. I didn’t want my bosses and clients to believe something was gravely wrong, so I did my best to hide it.
Weight is not necessarily an indication of health, and diet culture is dangerous. I have a history of disordered eating and am continuously working on my mental health as it relates to body image. I also have celiac disease and was underweight for many years because I wasn’t able to properly absorb nutrients from food. Gradual, healthy weight gain can be incredibly important for health, but in this particular case, weight fluctuations were a byproduct of a dangerous thyroid condition that was out of control.
In the months before I received my Graves’ diagnosis, my rapid heart rate wasn’t my only symptom. I also lost about 5 pounds. It seemed like a relatively minor change and it wasn’t immediately a red flag that something was wrong. However, the thyroid largely controls metabolic function, and I learned that weight loss is a symptom of Graves’ disease.
Over the course of the next two years, I worked closely with my doctor to try to find the right medication dosage to help balance my thyroid levels. We started with a small amount of medication and progressively increased it. Again, my weight was affected – but this time, with every dosage increase, I gained weight.
My thyroid levels wildly swung from too high to too low as we continued to try to find the right hormone balance. One would assume that logically, my metabolic function would similarly be thrown from one extreme to the other. That wasn’t the case. My weight stayed the same or increased with every dosage change, and I ended up gaining 25 pounds in a relatively short amount of time.
None of my clothes fit, and though I tried to simply buy new clothes, I continuously found that I needed more options. I could no longer wear the dresses I loved and associated with meaningful moments in my life. It took a lot of self-awareness to monitor the emotions I was experiencing and stop myself from going down a rabbit hole into old disordered eating patterns.
Combining all of my symptoms, it felt like everything was going haywire. Nothing I did combated the whirlwind my body was going through, and I felt powerless. It made me feel both unhappy and scared. It seemed like my body was working against me, not with me.
I was unable to control Graves’ disease through medication alone, and in the long run it was both unhealthy and dangerous. My doctor and I determined that it was time to take action. We decided on a total thyroidectomy – my thyroid would be removed via surgery. It made sense in my mind: instead of frantically (and ineffectively) trying to block thyroid hormone production like a crack in a dam threatening to burst, I would start fresh. I would have no thyroid and then give my body the hormones that it needed with thyroid medication.
Fortunately, following the surgery, I responded to the new medication incredibly well. I was able to quickly get my thyroid levels within a normal range. My heart rate returned to normal, my hands stopped shaking, and the hormones that control my metabolism balanced out. It was all because of my thyroid, that tiny gland that controls so much.
Best of all, I feel like my body is no longer fighting itself. My body is working with me again. And I finally feel in control.