As you may or may not know, January is Thyroid Awareness Month. As someone who has dealt with thyroid disease, and ultimately, thyroid cancer, I feel it is my duty to share my story as well as some information on the tiny butterfly shaped gland that controls so much of our overall health.
First, some quick information on the thyroid gland. The thyroid gland is located in your neck, just below the adam’s apple. It releases hormones that control nearly every cell in your body. It is also highly responsible for your metabolism and sleep patterns. Too many of these hormones cause your body to speed up, while too little causes it to slow down. Thyroid disease affects as many as 200 million people worldwide and if left untreated can cause a whole host of problems, including infertility, Alzheimer’s, strokes, and death.
Here’s a nifty infographic that highlights some of the common symptoms of thyroid disease. While this is by no means an exhaustive list, these are some of the most common complaints.
Like many others, it took a long time before I realized what was wrong with me.
I’ll start off by saying I’ve never been the healthiest of people. My immune system has never been the greatest and I’ve dealt with everything from asthma to GERD to kidney stones on top of my mental health issues. When I was about 20, I went into my OBGYN for my yearly exam. During the visit, they felt my neck and noticed a lump in my throat. Combined with changes in my menstrual cycle and sudden weight loss, they referred me to an endocrinologist.
After running through my symptoms, they ordered some blood tests and found that my thyroid was slightly overactive. They also did an ultrasound of my neck, which revealed nodules on my thyroid gland.
They scheduled me for a biopsy, which basically meant they stuck hollow needles into my neck to pull out samples of tissue from the growths. These came back benign, but they ordered me to come in every 6 months to recheck them. I also had to get more blood tests to keep an eye on my hormone levels. They weren’t high enough to be of concern at that point, but they were certainly high enough to cause some issues.
Around the time I was 22, I started losing even more weight at an alarming rate. I chalked it up to spending long hours on my feet and not eating well. Food seemed to run right through me, which I assumed was due to my many digestional issues.My hair began to thin and I became more “manic” and much more easily agitated than normal. I didn’t sleep well, which wasn’t all too unusual for me. I was always restless…even more so than normal. I also began to develop some weird tics, most notably a twitch in my eyebrows.
At the time, I remember family members questioning me about drug use. This was humiliating and infuriating to me. I was drinking more than I probably should have been (I was a college kid, after all), but I wasn’t doing the type of things I was being accused of. I had no explanation for what was happening to me and I didn’t like it one bit. No one understood. I felt like I was going crazy as I waited for the doctors to figure out what was wrong with me.
At my next appointment, they found that my levels were much higher than they had been previously and that I had more nodules forming on my thyroid. This of course, meant more biopsies.
I went to my follow up appointment alone, despite offers from my mother and Almost-Husband to come with me. I figured it would be no big deal. They’d tell me my thyroid was over-active (which I knew) and I’d be given some medication and be on my way. I drove the hour and a half to the hospital where my specialist was located, jamming out to my music and feeling an immense sense of pride at the fact that I was doing this alone, like a real adult.
I’ll never forget the panic I felt when the doctor told me the news. There were cancer cells present in the samples they had taken. I listened in stunned silence as the doctor told me that thyroid cancer was treatable. She told me it was a very small amount of cancer and that we caught it early enough that I would make a full recovery. She described the options I had. I could take a radioactive pill that would kill my thyroid, or we could do surgery to remove the side that was effected. I told her that I needed time to think about it and to talk to my family and she was very understanding. She referred me to a radiologist and I was on my way.
I held it together until I reached the parking garage. It was a beautiful day outside and I was parked on the very top. I remember finding a small amount of comfort in that as I stood looking over the surrounding area. I took a deep breath and got into my car. I called my mother and immediately broke into tears. I had cancer. Cancer. I was terrified. I was devastated. I was lost. After telling her what the doctor had said and taking a few minutes to calm down, I called Almost-Husband. Like my mother, he apologized for not having been with me. I told him it was okay and repeated the one thing that made it seem okay: it’s treatable. Once I was calmed down again, I drove home, crying in spurts as I made the long journey.
At the appointment with the radiologist, I decided that I couldn’t go through with it. The idea of swallowing radioactive material just didn’t sit well with me, nor did the thought that I’d have to be on medication my whole life. This was especially concerning to me as I was concerned about how that would affect my future fertility. With the surgery, there was a possibility that my levels would even out on their own.
I’ll never forget the doctor laughing at me when I told him I wanted to do the surgery instead. It made me angry. I felt humiliated. I remember thinking that it was entirely disrespectful and that it was my body, so I should be able to make the decision on my own. After the consultation I went back to my specialist and told them I wanted the surgery. The risks were minimal, the most concerning for me being the possibility of paralyzing my vocal chords. However, it had to be done.
I was 23 when I had the left side and isthmus of my thyroid removed, leaving me with a nifty scar on my neck. Everything went off without a hitch and soon I was at home, with my mattress on the living room floor in my own little healing haven. The first week or so went by in a medicated haze. I slept, watched TV, had food brought to me, and spent time writing and drawing in comfort. At the time we had two little kittens who never left my side.
When I returned to work with a ten-pound weight restriction, they refused to honor it. My normal job never required me to lift anywhere near ten pounds, so I figured I’d be okay. For some reason, they chose the day I returned (note in hand) to move me to a job lifting 30 pound boxes. When I complained, I was told that I had to choose between my health and my job. Guess which one I chose?
To this day, I don’t bring up my bout with cancer. When it comes up in my medical history and someone calls me a “survivor” I feel like a fraud. It doesn’t feel “real”. I didn’t have to go through chemo. I didn’t have to go through radiation. They simply cut it out and I moved on. In fact, my thyroid levels evened themselves out and I haven’t even needed medication, although I do still have to have my blood drawn regularly to make sure it stays that way. I was indeed very lucky.
If you are experiencing any of these symptoms, bring them up to your doctor right away. You don’t want to let a thyroid disorder go untreated and cause damage to your body.
I encourage all of you to do regular checks of your neck to ensure the health of this vital gland. A great tutorial for self-examination can be found here. Please, take care of yourself!
I also want to remind you to be understanding of people in your life who are dealing with this or other “invisible” illnesses. It’s not easy living with any illness and no one needs the extra stress of Judgey McJudgertons or feeling the need to constantly explain themselves. Be gentle with yourselves and each other. Remember, we’re all in this together.