My name is Jeanne and I’m a twenty something/almost thirty year old Kindergarten Teacher. My goal is for this blog to serve as a helpful guide for those who live with Thyroid Disease and to spread awareness. The content of this blog will also be a documentary of my current journey. It will be a learning experience for me and my hopes are that it is useful for myself and for others.
Warning: For the abbreviated, non-novel version of this story, read the bold and italicized text.
And so begins my story…
In 2005, my mom discovered that she had Hyperthyroidism. How did she know? At first, she didn’t. At first she thought that she was drinking too much coffee because she noticed that her heart was racing. Did you know that many people who have some type of Thyroid Disease are completely unaware of their condition? Thyroid Disease can take years for people to realize that they have it. Luckily for my mom, she discovered it at a critical point. Shortly after her Thyroid problems began, my Mom was diagnosed with Papillary Thyroid Cancer. At the time, I was a nervous high schooler who didn’t understand anything about what a Thyroid even was. All I knew, from the encouragement of my mom, was that this was very treatable. Her entire thyroid was removed and she had a radioactive iodine treatment performed as well. This particular treatment was scary for my family due to the fact that she could not be near my brother and I for a few days due to the high dose of radioactive iodine in her body. She began taking Synthroid medication to help herself function without her Thyroid.
Fast forward to Winter of 2014…Mom was great. Her levels sometimes fluctuated, but she continued her medication and kept on fighting by living a super healthy and active lifestyle. She continues to do so today. One morning, I woke up for worked and began to wash my face when I noticed a giant bump on my neck in the bathroom mirror. I deliriously wondered if it was my Adam’s apple. However, everyday, I noticed that bump, felt that bump, and wondered what it was. As soon as I pointed it out to my mom, she brought it up to her Endocrinologist. I was immediately squeezed in for an appointment and was told I needed a biopsy of the nodule that was on my neck. At the time, I was 26. I began to become a worried researcher, reading up on Thyroid Nodules and biopsies. That March, I drove out to the biopsy with my mom and fiancee in the middle of a giant blizzard. For some reason, snow is a reoccurring theme to my thyroid appointments. I’ll get to that later. The biopsy was awkward and uncomfortable, but a few days later, I was relieved to find that the nodule was benign. It was large in size and a pain in the neck (no pun intended), but didn’t present any immediate danger. My levels were normal and the nodule was drained so that it wasn’t as noticeable.
In the Fall of 2014, I returned for my 6 month follow up of the nodule and after the ultrasound, I learned that the nodule was still the same size. My levels showed that my levels were slightly off, but not low enough to show a concern. I had a sigh of relief as I focused my energy on teaching and planning for my wedding.
In the Winter of 2016, I returned to the Endocrinologist for my next sonogram/blood work appointment. My husband I drove for an hour during yet another snowstorm to get to my appointment that I couldn’t lose. My levels were dropping even more. My TSH was getting very low, but my T3 and T4 levels were normal. What was tricky was that I was no longer on my parents insurance and the doctor I was seeing was not on my new insurance plan. I wondered what to do and began searching for new Endocrinologists. Time passed and after going for a physical with my regular doctor, I got a concerning phone call. The nurse explained that normal TSH levels are around .4 – 4.0. My levels were currently at a level .001, meaning that I had Hyperthyroidism. I carefully went to go back to my own research, trying to find more helpful tips and natural ways to help myself while I waited for an upcoming consultation with a new Endocrinologist. I read a lot about eliminating gluten and I began to cut it out of my diet. I felt pretty good, but I wondered if it would make a difference. Sadly, due to a typo on my insurance companies website, I was not able to be seen by the new doctor. On the website, it gave the wrong address and telephone number. When I arrived to his office, he had no record of the appointment. I got a phone call that day from a local health clinic where my appointment was scheduled. I’m still baffled by how that could possibly happen. I grew frustrated as I called doctor after doctor without any kind of flexible availability. At the same time, I began teaching at a new school that I loved and was confused by the fact that I began experiencing some symptoms I never experienced before. My voice began to become very hoarse, which in my other 5 years of teaching, never had been a reoccurring issue. It’s reached the point now where I lose my voice completely in the late afternoon and sometimes the morning. I began to feel a huge amount of anxiety and irritability as well as racing heartbeat that would wake me up in the middle of the night. With an appointment with a new endocrinologist in December, I couldn’t take it anymore and went in to see my regular doctor and explained everything. Being the amazing doctor that she is, she immediately referred me to another doctor in her medical group and I had an appointment scheduled for the next week as well as an ultrasound and lab work. Why didn’t I do this in the first place? I was trying to find a new doctor close to where I live. My regular doctor lives by my childhood home, an hour away from where I live now and over two hours from where I work.
I promise I’m getting to the end. My husband I went in to see my new Endocrinologist late one Thursday evening after our commute from New York City to Suffolk County, Long Island. No snow this time! My nodule? Same size. My levels? Super low. He told me that I needed to get to the bottom of this so that we could find the missing pieces and to get me at a healthy level for my future. Whenever my husband I decide to start a family, my levels have to be regulated. Gluten? Not a function. He told me to go out and enjoy myself because with my particular case, Gluten was not a cause. What it appeared to him is that the nodule itself is the cause of my Hyperthyroidism/low levels. I scheduled a “Thyroid Uptake” exam in which I would take a radioactive iodine pill and return the next day for a scan to show the function of my Thyroid. I also was prescribed a Beta Blocker to slow my heart rate and to ease some of the anxiety brought on by the Hyperthyroid. The hoarseness? Unfortunately nothing to do about it unless the nodule is gone because it’s pressing on my trachea.
December 28th & 29th 2016: Became temporarily radioactive. Forecast called for chances of….wait for it….snow! Luckily, it mixed with rain. Didn’t feel a thing, but felt like an alien. Finally, after years of wondering what is happening in my neck, Dr. T called with my results. What are they? My nodule is a “hot nodule”, meaning it is active and has essentially become part of the right side of my thyroid. This lovely lump is causing my thyroid to work overtime, causing my levels to drop very low and for me to feel the anxiety, weight loss, palpitations, and multiple other annoying issues. The Beta Blocker was helping, but the nodule has to go. My next step? Surgery in which my thyroid gland is removed. I will no longer have this butterfly shaped gland, hence the title of this page.
January 6th: Met my surgeon. Small amount of snow followed by a snowstorm a day later! I am fortunate to have a really great Endocrinologist who recommended a terrific surgeon in New York City. After a quick subway ride, meeting my husband halfway, and a very nice snowy stroll beside Central Park, I arrived. He discussed of the importance of removing my entire thyroid. Even though the large nodule is on the right side, I have many small nodules on the left and it is a safer choice to remove the whole thing. This is especially the case for me since the mother daughter risk of thyroid cancer is very strong. I’ll need to take Synthroid, just like my mom, to maintain my levels without my thyroid. I was relieved when the surgeon also pointed out the hoarseness. However, I am currently on the road to finding out the cause. The surgeon did an endoscopy (a lovely camera tube inserted up the nose and down the throat) and showed me my vocal cords which as he stated were, “A complete mess”. The causes of that? Damage to the vocal cords from either using my voice the wrong way or other possible causes that I am a little nervous about. However, he referred me to a Laryngologist who I hope to be seeing soon.
My Moving Forward To-Do List
- Head in for my thyroidectomy on February 21st.
- Recover without damage to my vocal cords and see a Laryngologist to fix my mess of a voice. (Please….spare my kindergarteners so they don’t have to hear my hoarse singing anymore!)
- Take the necessary steps to keep my levels at a normal level so that I can start a family one day and live a healthy life.
I plan on doing this by developing a thyroid-healthy lifestyle consisting of the right foods, exercises, and techniques to keep my symptoms in check. I hope to learn from others, to connect with people, and to help others with what I learn and do.
From the bottom of my heart, I thank anyone with the patience to read this entire story. I look forward to getting started! Lots of love.