There is a promising new drug undergoing clinical trials.
After six months of trial and error, my endocrinologist agreed that we needed to try something new.
She proposed radioactive iodine treatment, but I ruled that out. While we have general data on the success of that treatment (90%), we also know it does not work for some people, and there are complications, especially for the eyes. I have three cousins who tried radioactive iodine treatment and ultimately ended up with surgery. I also learned from my mom that hyperthyroidism runs on her side of the family. She informed me that the entire McLaren family (which is my grandmother's family from Carriacou) has thyroid problems. It has affected many of the grandkids. I am so lucky.
I initially said yes to doing radioactive iodine treatment, which, because of possible compromise of vision, required a trip to my ophthalmologist. He did some tests and then confirmed to me that I had two related diseases, Graves Disease and Graves Eye Disease. He also advised me that neither radioactive iodine treatment nor a thyroidectomy would address GED. GED has to be treated separately, and my options were limited. The proptosis in my eyes is worsening, but until I recover from the thyroidectomy, there is nothing to be done.
Yesterday, I met with a surgeon at the Rutgers Cancer Institute of New Jersey in New Brunswick to discuss the expectations and risks of a thyroidectomy. Surgery is scheduled for the second week of December.
Am I scared? Yes. Absolutely. There is a risk of infection and bleeding. There is a risk of nerve damage leading to changes in speech.
However, the risk of untreated or poorly treated Graves Disease is higher. None of what I am experiencing right now is pleasant. Bhavna reminds me that the silver lining is that this chapter of my life will be in the past in a few weeks. But in the meantime, I'm shivering in the cold rain.
Over the last few months, my thyroid had put my body through a Gina yo-yo. My body responded well to the methimazole. A little too well. I went to hypothyroid again.
Even though my dosage was half what it was when I went through this the last time, yet this new lower dose was too much. But we caught it early. I knew what the symptoms were and called the doctor. She ordered some blood tests which confirm what I was feeling.
She prescribed some new medication to help me recover from, but it went too far. I did not back have hyperthyroidism. I was to stop that medication and take the methimazole.
This morning I woke up and my eyes were swollen, the lymph nodes in my next and swollen and I generally feel terrible.
The doctors warned that surgery might be my only option. I may soon have a thyroidectomy and after that, orbital eye surgery.