Fifteen Years Ago
The sickness entered my life gradually. At first, I felt run-down. I dismissed the fatigue as something chronic and casual, something anyone might experience when they’re feeling stressed and overworked. I just felt so tired all of the time.
Then the symptoms began to pile. Within a short period of time, I suffered unexpectedly from things like muscle spasms, migraines, mood swings, anxiety, panic attacks, lockjaw, hair loss, pink eye, insomnia, heart palpitations, hand tremors, and sudden leg weakness.
I had each of the more serious cases diagnosed and resolved individually, often at a different clinic for convenience. Lining up all of these symptoms together and in one place did not occur to me until much later.
My eyes also widened considerably, a beautiful effect to me at first, until one day, someone remarked to me that it seemed like my eyes didn’t fully close.
I didn’t have time to eat. I binged when I did. No matter what or how much I consumed, I lost a significant amount of weight so as to become nearly unrecognizable. Several people marveled at my new body and told me I’d never looked better. I was vomiting or having diarrhea daily.
My family physician diagnosed me with severe hyperthyroidism according to the analyses of preliminary blood work, a thyroid ultrasound, and a radioactive iodine uptake test. An endocrinologist specializing in thyroid disorders subsequently gave me a secondary diagnosis of Graves’ Disease with thyroid eye disease.
Post-diagnosis, the first question one of the doctors asked me was, “Have you experienced some kind of trauma recently?” I definitely had some unavoidable work stress and family drama going on at the time. Maybe it was an overaccumulation of the usual bullshit and other relatively mundane things. It was hard to pinpoint anything specific at that time.
It Is What It Is
A potentially traumatic origin story is about as exciting as Graves’ Disease gets. There’s no glamorizing Graves’. It is an autoimmune disorder. It is a chronic medical condition that begins when the body’s immune system becomes defective. Finding itself deficient, the immune system miscommunicates with the body, overproducing armies of surplus thyroid hormones and antibodies that, in my case, infiltrated and attacked the thyroid glands and the eyes.
In terms of causative factors other than trauma, the specific hows and whys of Graves’ remain guesswork and probably depend variably upon the individual sufferer. Despite its grim-sounding name, Graves’ is neither fatal nor contagious.
The supernatural weight loss that had accompanied the daily vomiting and diarrhea had come to an end, along with the random compliments about my body. I also rapidly regained the weight I had lost pre-diagnosis, and then some on top of that. It felt like my body was out of control.
Resistant to Meds
Following two years of treatment with little to show for it, my endocrinologist at the time advised me to have my thyroid completely removed. Radioactive iodine treatment, the more common non-surgical resolution to med-resistant hyperthyroidism, was ruled out for me because it had a high potential to exacerbate my eye symptoms.
So, I underwent a complete thyroidectomy.
Saying Goodbye to One Of My Top 10 Hated Words
Would a goiter by any other name sound as gross? At the onset of my disease, the swelling and enlargement of my thyroid gland, referred to as a “goiter,” had measured 4-5 times its normal size. A half-doughnut-shaped, crescent hump formed across my neck. The goiter looked about as ghastly as it sounds. I was both physically and mentally relieved when the thyroid goiter was removed in its entirety from my body.
One Problem For Another
The thyroidectomy had essentially rendered me hypothyroid on a permanent basis. To replace the hormones my body can no longer produce on its own, I take a Levothyroxine pill every morning. I had basically swapped one set of hyperthyroid stabilizing drugs for a lifetime of hypothyroid maintenance ones.
High, Low, And Healthy In Between
Twice a year, I get blood work done to see where my thyroid levels are at. The results tend to match up with the symptoms. When my can-do spirit soars and I can’t slow down long enough to sleep or even have a period, it usually means my levels are high and my thyroid meds need to get lowered. When I’m getting bogged down again by fatigue, lethargy, and depression, my thyroid levels are probably low and my meds might need to get raised. Stable thyroid levels, somewhere in between, generally mean a healthy me.
Like the goiter, my wide eyes drew unwelcome attention. After a while, it became nearly impossible for me to maintain composure and a sense of normalcy in the face of what felt to me like constant scrutiny. I can still vividly recall the hard stares, the unchecked reactions, the blatant double-takes, and the invasive questions. I’d come home most days feeling deeply hurt, defeated or seething with anger. Every day, I had to force myself to leave home at all.
I genuinely worried I’d have to live like this forever. Some people do. But now that my thyroid issue was more or less under control, I wanted to keep moving forward if I could. So I turned my attention to dealing with my eye issues.
Progress, at first, seemed meager at best. Every eye doctor I visited in the area seemed either fearfully out of their element or apathetic about my thyroid eye disease. Still, I stubbornly shuffled myself around different medical offices. Visit to visit, I underwent tests. With one doctor, I discussed possibly getting on a waitlist for an eyelid surgery that could result in what online message boards described as “fish eyes.” No one seemed sure how to proceed or what to recommend with certainty.
In the meantime, I experimented with various eye gels at home and learned how to apply medical paper tape over my eyes in criss-cross shapes so I could mechanically close my eyes to sleep.
Changing The Trajectory
Fast forward a few years, and my hunt for the right eye treatments continued, eventually leading me to a progressive and action-oriented oculoplastic surgeon. With this doctor, the downward trajectory of my treatment path finally changed. He inspired confidence with his extensive surgical experience and body of personal research on Graves’ opthalmopathy and thyroid eye disorders. At last, someone who knew their shit!
A successful sequence of orbital decompression, strabismus, and eyelid correction procedures followed, creating room for my eyes to ease back into their sockets naturally while correcting the physical disfigurement of my visual proptosis. The surgery set also alleviated my previous symptoms and reduced the intense eye pressure.
There came a point thereafter when I no longer needed to paper-tape my eyes shut. I was able to close my eyes fully and naturally. I was able to sleep tape-free!
Suffering With The Like
Over the years, I have joined small local groups and larger web communities created for people living with thyroid disorders, Graves’ Disease and thyroid eye disease. Meetups were awkward as hell, but spending time in like company contributed in many ways to helping me feel less abnormal.
It’s not cancer. It’s not heart disease. Graves’ Disease ranks pretty low on the sympathy scale. In my experience, people tended to miss or dismiss the inherent implications of what the symptoms of Graves’ Disease can do to a person’s appearance and sense of self. The daily insensitivity and persistent invalidation from the people around me wounded me harder at times than anything the disease could do.
Lingering Shame Factor
Before I became sick, I never really had a problem looking anyone in the eye, but at the height of my disease, there were a million moments when bravery shook and faltered. To this day, that old, built-in coping habit I had developed of avoiding mirrors or refusing photos still rears its shameful head sometimes.
So much time was wasted submitting to inadequate treatment for years on end! I was too often frustrated and disappointed by the seeming lack of information and options available to me. Unfortunately, when I was diagnosed, not enough was shared, known, or truly understood about Graves’ Disease where I lived. I suffered a long time because of that.
Since then, things have improved and changed a lot. Hope endures on the Graves’ front for me today. Fifteen years later, I still have a lot to ask and I still have a lot to learn. I still get flare-ups from time to time, too, but my disease has otherwise been in remission for several years. I hope it never comes back!