First they told me I had endometriosis and put me on a birth control regime to control the stabbing that paralyzed me every few weeks. The internet was new then, and the few times I signed onto the music of AOL, it was mostly because my best friend and I decided to argue with people in chat rooms. I didn’t fully understand the purpose of internet or what it had to offer. However, typing “endometriosis” into a search engine was less embarrassing than looking it up in the card catalog at the library.
I was sixteen and facing infertility for the first time in my life. I dealt with it by saying I didn’t want kids anyway. When I was 20, I had scar tissue and lesions removed from my uterus. Periods weren’t so bad after that, but I was warned that this didn’t cure me. It was a temporary solution.
A few months before turning 35, I decided it was time to find out exactly what my body already knows. I went to the nurse practitioner I’d been seeing for a year and asked for a complete blood panel. I wanted to know if I will ever have a chance of having a baby, so I can deal with whatever that answer is and know my options. I was called within a week and told to come in to discuss the results, which we all know is a sign that something isn’t right. The Nurse Practitioner came into the room and said, “Your thyroid has pooped out, so you’re going to need to be on medication for the rest of your life and have regular blood tests.” I suspected thyroid issues. It runs in the family. Plus, no matter how healthy I ate and how much I exercised, weight piled on like I was eating McDonald’s every day. I had shared my thyroid concerns with her the week before. Her answer was writing a prescription for a diet pill that would also ensure “my house, car, laundry–everything clean” after all the energy it would give me. I never filled the prescription. I never wanted it in the first place. She went on to tell me how my cholesterol was dangerously high and my Vitamin D was extremely low. Not to mention, my testosterone levels were extremely high.
“What does this mean for any chance of me having a baby?”
“We have to get your thyroid under control before we can have that conversation.”
I’d just been told, once again, that my body was fucked up. I was sixteen again and resorted to the internet for answers with a copy of my blood work by my side. I easily found that my high cholesterol and low Vitamin D were linked to my under-active thyroid. I began to wonder if I had Polycystic Ovarian Syndrome (PCOS) when reading about high testosterone in women. Our thyroids run our metabolisms. When it poops out and decides it doesn’t want to work, everything goes a little crazy. Everything I read said that one should be tested every six weeks to see if TSH levels are lowering and if the medication dosage needs to be increased. I wasn’t supposed to get blood work for three months.
I called the nurse practitioner and asked to be referred to a specialist. She never referred me. Luckily, a friend told me about an endocrinologist who would let me self-refer since I had a PPO. I waited a very long five weeks to get in to see him. He went over everything, confirmed the links of some of the test results. I’d had my second blood test by now and my testosterone dropped in half. He had no answers as to why. It wasn’t linked to the thyroid treatment. He looked at my hormones and asked what day of my cycle I’d been tested. While hormones showed within normal ranges, with the exception of the testosterone, they weren’t aligned with where they should on that particular day of my cycle. He referred me to a fertility doctor.
“Have you ever had an ultrasound?”
“Yes, on my uterus as a teenager to see if I had cysts and a few years ago after a lump was found in my breast.”
“But not on your thyroid?”
“We are going to do that today.”
I followed him down a short hall, and a technician came into the room. She put the cool gel on my throat and began moving the probe around. She kept going back to the left and clicking on her keyboard.
“The doctor will be in to talk to you.” She walked out without looking at me.
The 30 seconds felt like an eternity. He came in and placed the probe on my throat. “You have a nodule. I’ll want to biopsy it to see if it’s cancer.”
I made an appointment to see if what I read online was true, to make sure I was being treated appropriately. I was walking out of his office with more blood work orders, a biopsy scheduled, and a referral to a fertility doctor.
“You have Hashimoto’s Disease from the look of your thyroid.” It was confirmed, just as with the endometriosis, my body is attacking itself. I have always been hard on myself, but this is a whole other level.
On the morning of my biopsy, I went to yoga. I took a Xanax because I’m not as strong as people think I am. When I sat in the waiting room of the hospital between my mom and stepdad, I began to cry. I was terrified and very few people understood or validated that fear, which made it that much worse to endure. Being my father’s daughter, I cracked jokes with the medical team about the bruising that could look like a hickey. The oncologist told me we would be taking samples to check for cancer and that if the results come back positive, that thyroid cancer is very easy to treat.
“I’ve read it’s a nicer cancer.” I tried to joke. “You really should put some pictures on the ceiling of waterfalls or animals. Something nice to stare at.”
“You’re right. We should. We had pictures of animals on the ceiling at the children’s hospital I worked at,” he replied.
“Well, I’m just an overgrown child, so I’d appreciate that.”
“Ahhh very true. I fully embrace my inner child too. We only get one life; we must live it to the fullest,” he said.
Then he stated my name, the date and time, and that the biopsy would be to test a nodule on the left side of my thyroid.
“I’m very sorry, but this is going to be painful. Please forgive me.”
The shot to numb me hurt the most. I could still feel the needle going in a couple of times as he extracted cells, but probably not as bad as if I hadn’t been numbed. Funny that something that is supposed to make you not feel anything has to hurt so bad.
It was all over within a half hour, and now I just had to wait. I spent that night alone eating ice cream and drinking wine. Even though my throat hurt, I spent a half hour on the phone with a former student who had just learned he didn’t receive financial aid he was counting on. He had no idea what I was facing, and in all honesty it was a nice distraction since I had been sitting alone in an empty apartment.
I called after a week of not hearing anything and was told I’d have to come in for the results. The dates they wanted me to come in didn’t work because I had to train the people I just hired. So, I had to continue to wait. I tried to comfort myself by thinking if something was wrong, they would insist I come in immediately.
After weeks of waiting, I finallyI sat in the exam room, nervous, checking email, wishing there was something to keep my mind occupied like waterfalls and animals. He walked in with his chart, sat and read, while I tried not to stare and read his mind.
“The results were benign. But inconclusive due to a small sample size.” He showed me the lab report where it read “less than optimal sample size.” My stepmom was with me and asked what will happen now. “I will want to biopsy it again. We will do another ultrasound in January.” All she heard was benign. All I heard was inconclusive and another biopsy. It has to grow because it’s very small. More waiting. I went to yoga for the first time since having the biopsy weeks before. I expected to be frustrated and weak, but I discovered I’m a lot stronger than I think I am.
I know it’s not a horrible cancer to have, if it does in fact turn out to be that. I know benign, for now, is good. But it doesn’t take away the fear. The waiting is the hardest part. Not knowing if this thing inside me is just a nuisance or something more is a bit maddening.
I’m not asking for sympathy or even empathy in writing this. What I hope is that it’s a reminder to listen to your body. I knew something was wrong. I’ve had high cholesterol forever, even when I was 90 pounds, but I didn’t know the link to my thyroid until very recently. We live inside our bodies daily, and it’s important to listen to what is going on. A medical practitioner can start to treat everyone the same as if we are just out of a textbook. If I had continued to see the dismissive nurse practitioner who denied my request to see a specialist, I wouldn’t know that there’s this thing growing inside me that can be hazardous. I had seen her in January because I was completely weak, dizzy, and nauseous. I didn’t have a fever. She prescribed some pills to take away the nausea and told me to rest. I know now, that my TSH levels were likely extremely high and that was the cause of me feeling so awful, but she never did blood work. Couldn’t be bothered with finding the root. She only wanted to treat the symptoms.
Even if it’s benign, a growing nodule is often removed because it can interfere with things like swallowing and breathing. At the very least, I have a doctor who is being careful and taking necessary precautions. And we all deserve that. We deserve to be treated with dignity, and even if we don’t have a medical degree, we know our bodies and when something isn’t right. That should be honored.