Out of Control with Graves' Disease

I think...no... I know I have always harbored a certain amount of anxiety. I tend to think deeply, putting everything in its proper place in my mind. With my mental "to do" list and all tasks allocated to their rightful place, I could move forward with a feeling of control over my day, my week, my life. This always kept my anxiety at bay, and I felt accomplished.

Then along came Graves' disease. My long-ago learned management tool no longer worked. I had no idea what was going on, but I did know my anxiety had increased beyond control. I can't even recall if my symptoms were gradual or sudden. What I do recall is that my mind raced and had no room for a "to do" list as it tried to keep up with the ever-increasing symptoms.

The symptoms I experienced

A skin condition

There was that weird skin condition on the front, lower part of my legs. My skin seemed darker, thicker, drier, and pitted like an orange peel. No matter how often I applied lotion or oils, it only got worse. I had no control of this, no where to put this in my mind, so I assigned it to "unknown" and resorted to wearing long pants, no matter the summer heat. I later learned the condition is called Pretibial Myxedema, a skin disorder that affects the anterior surface skin of lower legs. This was later treated with a nightly application of corticosteroid cream and cleared up. 1

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Heat intolerance

This next symptom was quite confusing. I have alway been tolerant of summer heat. In fact, I normally run cold. When most people are enjoying the sun in sleeveless shirts, I'd be among the minority wearing a sweater. I stunned friends and family as I shed my layers and complained of the heat. Not a real concerning symptom on its own, but it progressed to sweating profusely. As I splashed cold water on my face and arms and applied deodorant for the third time in a day, I wondered what corner of my mind do I assign this new development.

High blood pressure

But no time to try and normalize it because on the heels of this one was another development just as shocking. High blood pressure! Normally my blood pressure was so low that medical staff would double and triple check it and then jokingly ask if I was alive. So having high blood pressure was quite alarming. Around the same time, I also was aware of a racing heart rate and a pounding sensation in my ears. It seemed my body had been reset to fast mode, and I could not slow it down. Again... out of control!

Heightened anxiety from new symptoms

I struggled with where to put all of these new developments. Do I embrace the new me? I couldn't, and my anxiety increased. These symptoms had no place in my life, yet it seemed like every day, a new one boldly tapped me on the shoulder and announced its presence. This next one shocked me!

Changes in metabolism

I had "no control" of my voracious appetite! To this day I am stunned that I was getting up in the middle of the night to eat! So I literally ate around the clock! My metabolism was so accelerated that when I wasn't ravaging for food, I was in the bathroom. Despite the huge intake of calories, I was losing a pound a day!

Fatigue

With my metabolism being so high and unable to slow myself down, I felt so fatigued. So much so that this next development scared me. At one point, as I raced through my day, I was in mid-step and my body simply and suddenly stopped. For a short but very scary period of time I could not even will my body to move. Was it neuromuscular fatigue or me just being so run down? I really don't have a medical phrase for it but I did know that my body was giving me a desperate message to see my doctor.

Regaining control over my Graves' disease symptoms

I listened to my worn-out body and went to my general practitioner armed with my list of concerns. As soon as we got the blood work results and my TSH level was .01, she referred me to an endocrinologist. I can't say I'm happy to have Graves' disease as a diagnosis, but it is my reality. With my endocrinologist's guidance and the aid of methimazole, I have learned how to manage it. It did take a while, but I am finally back in control with a healthy body and mind.

Do you have a Graves' disease or thyroid eye disease (TED) story? What symptoms did you or do you experience? Click the button below to share with our community!

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