I recently had an appointment with an endocrinologist. It was my first time meeting with a doctor in this field. I was a little nervous, but hopeful that this doctor would help me with my thyroid condition. I was not disappointed.
Thyroid Herstory
When I was ten, I was diagnosed as having a Goiter. The treatment was to put me on Synthroid, a thyroid medicine, to see if it would shrink my enlarged thyroid. Before being diagnosed, I had noticed my neck looking slightly bigger than I remembered it previously. I also had a craving for salt, so much so I would pour piles in my hand and lick them out of my palm and repeat.
After two years, my thyroid had shrunk and resumed its pre-goiter size. I was taken off the Synthroid and sent back into the world just in time to become a royal hormonal pain in everyone’s ass — a teenager trying to make sense of what’s happening to me and why.
Fast forward twelve years. I had been enjoying motherhood for a year. I went in for my annual and had a discussion with my ob-gyn about fatigue, intolerance to cold, memory trouble, and low energy. They ordered a blood test. When the results came, I was diagnosed with Hypothyroidism. I was prescribed Synthroid and ordered a new blood test in three months to test my thyroid hormone levels.
For a year, I had my blood tested every three months and having my thyroid medicine dose modified. After 18 months, we found a dose that was working and a generic version of Synthroid that did not wreak havoc on my gastrointestinal system. I have been on this same dosage and generic medicine with annual and bi-annual blood tests for the last 15 years.
Hormonal Redux — the last three years
In 2018, I had a Total Hysterectomy. The word “total” indicating that my cervix and uterus were removed, but I kept my ovaries. This was due to a resurgence of an abnormal pap smear, followed by colposcopy, then a LEEP procedure, with all signs pointing to adenoma cells in my cervix. (The two procedures took place within six months following the abnormal pap result. The surgery was scheduled within 1 1/2 months of seeing the LEEP findings.) After the surgery, I was told that I may experience menopause earlier. Even though I had my ovaries, they would produce hormones at a lessened rate being separated from the rest of my reproductive parts.
In the last year, I have noticed an aggravated increase in my fatigue. I become winded very easily. My temperature regulation is polarized — cold hands, nose, and feet one moment then, 30 minutes later warm to almost sweating. My memory has taken a nosedive. It’s like my body is a machine being downgraded. My physical with my doctor came through showing I was “maintaining,” but they ordered an ultrasound of my throat.
When the ultrasound came back my physician noted there were thyroid nodules which raised my hackles. I had not heard those words in reference to my thyroid since I was ten. The most recent time I had heard them was in regard to my aunt’s Thyroid Cancer, whereupon she no longer has her thyroid. Of course, it was not the physician delivering this news to me on the phone it was a nurse. The nurse was only repeating the few things the doctor had passed along and I had too many questions and little comfort from the answers I was receiving.
I scheduled a virtual consultation with the doctor for three days from then. That meeting only eased my discomfort a teeny bit. Thankfully, my doctor recommended an appointment with an endocrinologist. They could see that I needed more than they knew or could offer. In this, I also was getting a doctor who specializes in thyroid conditions, disorders, and diseases.
Being Seen
The endocrinologist met with me for 45 minutes. They never acted like they needed to rush me out of the room or that they needed to rush out of the room. They were there to explain everything, answer my questions, and provide information to take home should I want it.
I discussed my desire to return to the exercises and activities I was engaging in before 2018 explaining that this was the year I had three surgeries. How I currently have been doing a mix of yoga and strength training and it seems the only thing I was missing was cardio. They suggested a tracker or using an app on my phone and taking walks.
The suggestion of taking walks as cardio blew my mind. It probably sounds silly.
However, I was brought up in the school of cardio being swimming, biking, running, and anything that gets your heart rate up — walking as a way to get one’s heart rate up was excluded from this “school of cardio.” I did not dismiss these suggestions, but let them marinate.
One of the last things the endocrinologist asked me has haunted me, “Have your eyes always bulged?”.
More on this in a bit.
In this appointment, I found validation. Finally, someone was listening to me, knew what I was talking about, and was helping me to do something about it. They explained that my hypothyroid condition had most likely led to an autoimmune thyroid also known as Hashimoto’s Thyroiditis. *Over time, my body saw my thyroid as an enemy because of the underactive/hypothyroidism and attacked with thyroid antibodies. Those antibodies slowly destroyed and replaced thyroid cells. This process has rendered my thyroid solely composed of thyroid antibodies instead of thyroid cells.
They ordered a blood test and were going to review the ultrasound. Then, they would get back to me when they had reviewed all results. Within 10 business days, I had my answer, which was I have Hashimoto’s Thyroiditis. As the universe would have it, I also started experiencing my first menopausal symptoms.
The Eyes Have It
Bulging eyes. Why did that question “Have your eyes always bulged?” haunt me? Eyes that bulge.
Only one other person in my lifetime had referred to my eyes as “bulging” and this person also called them “buggy.” The word “bulge” has a negative connotation when referring to one’s eyes.
Growing up, I never thought of my eyes as one way or another — never gave thought or care to how they looked. But years upon years of people I knew and complete strangers remarking upon my eyes in positively connotated ways “big and beautiful” standing out amongst the most commented it began to “go to my head.” Somewhere along the way, I developed an appreciation for the compliments/comments and of what everyone else appeared to be seeing.
So, when the endocrinologist asked me this it felt like an insult. Yet, I had to parse through my vanity to see that they were asking me if my eyes had been the same size my entire life. “Yes” was my answer.
This question stuck with me on my drive home and through the evening until I brought it up with my partner. Saying it out loud to someone made it stick. I needed to know more. I did a Google image search on “Thyroid Eye” and that opened things up for me. There were a few images that had a before thyroid concerns and after thyroid concerns. I started to see myself in these faces and decided to look at images of myself. I went all the way back to birth and my first year, which confirmed it. Yes, my eyes have always bulged and looked like they were putting a massive amount of pressure on my lids causing dark rings — the strain of containing this big globes. I started thinking about relatives who have or had thyroid diseases. It all goes back to my big, beautiful, bulging eyed relatives.
Herstory Bridge
After doing the bulging eyes image review and making a connection to my birth and family members I had the thought that the thyroid disease had been in me from the start. Another thought was that the eyes were one indicator that this gene and/or chromosomes have been there in the family lines from the beginning. Now, I cannot help but consider the eyes of my children and any symptoms they complain of in their every day. A mother’s worry and a thinker’s brain are never done!
I took up the endocrinologist’s suggestion and got myself a FitBit. It has been useful to see what my sleeping patterns are specifically when it comes to awake times in the night. Though, I may be in bed for 8–10 hours I now am getting a better idea of the quality of that time spent lying down resting. It’s also helping me be accountable. I get a sense of where my heart rate is for various activities, what and how I reach a cardio state, and how often I am getting physical work in my day. I feel like it’s a small semblance of control and authority in a body that I have been doing battle with my entire life.
Now that I know what I am dealing with and up against I am slowly feeling less like battling what I cannot — a thyroid with disease — and syncing up with a body and endocrine organ that need my cooperation. Knowing that fatigue is going to be a fight until I am no more is something that I am learning to manage. Because I finally have someone with the knowledge I need to make surviving and existing with a thyroid disease something I can live with…bulging eyes, memory losses, tiredness, hot flashes, and all.
DISCLAIMER
*I do not have a medical background. This is my attempt to explain what was described to me by the endocrinologist. For more information about the thyroid conditions mentioned in this story, visit the hyperlinks or go to thyroid.org to learn more.
For an update on the last six months of having this diagnosis, check out: Hypo to Autoimmune to Hyper and Back: Body Battle, Part Two available here —
