This post is long overdue but I thought it important to share because when I’ve previously mentioned my experience with thyroid disease I’ve had readers reach out asking about my experience as they, too are sufferers. I was in the thick of battling this disease from early 2012 through 2015. It is only recently that I’ve felt strong enough and comfortable enough to share my story and it was very hard for me to pen this post but I did so with the hopes that it will help even just one person…
To level set, I thought I’d share a few key things to know when it comes to thyroid disease:
- While it is a small gland, the thyroid plays a huge role in many bodily functions. It produces thyroid hormones which maintain the body’s metabolism. It is housed just above your Adam’s apple.
- There are two types of thyroid disease: hypothyroidism (under active thyroid) and hyperthyroidism (over active thyroid).
- Thyroid disease is more common than you think and 1 in 8 women will experience some sort of thyroid disfunction in their life. Thyroid disease is more common in women than in men.
Long before I was ever diagnosed with hyperthyroidism, I had signs of the disease. Most noticeably were my irregular periods, my difficulty falling asleep and my severe hot flashes. I remember living in San Francisco and getting off the bus to walk a few blocks to my office and I’d arrive to my desk and have to throw open the nearby window and stand in front of it drinking water until I cooled down because I was sweating and so overheated from a short walk.
When I moved to New York all my symptoms seemed to get worse and upon mentioning my excessive hot flashes to a doctor during a visit for a sinus infection, I was finally properly tested and diagnosed with hyperthyroidism or Graves’ Disease in early 2012. You can attempt to treat hyperthyroidism with medicine which was the first course of action my doctor and I tried.
Much of battling thyroid disease is a waiting game which makes treatment of it extremely frustrating. It’s monitoring your symptoms carefully and routinely getting blood work. I was getting blood work done almost every month at one point and traveling an hour to see a doctor at Columbia just as frequently. While on the medication my symptoms didn’t get better though and, in fact, I felt much worse.
My hyperthyroidism and the drugs caused me to have an appetite that was in overdrive and I suffered some major lethargy. I was coming home and able to eat a whole pizza by myself. I let myself go during the year that we attempted to treat the disease with medication and before I knew it I had gained 30 some pounds. I didn’t even recognize myself when I looked in the mirror. As someone who had always been naturally thin it felt like my body had turned on me. I tried fad diets and went brunette because my hair color felt like the only thing I could control about my physical appearance. I stopped taking outfit photos or showing myself on social media and avoided all events. I was dressing only to be comfortable and to hide my body and I was miserable on a day to day basis always sweating and experiencing swelling. (There were days I could barely get shoes on my feet they were so swollen…) I developed a goiter which made my neck look huge (a goiter develops when your thyroid gets enlarged) and I could barely climb stairs or walk to the subway without breaking out into a full sweat.
After determining the drugs weren’t working, my doctor recommended the other common course of action for treating hyperthyroidism: radioactive iodine. (Surgery can remove your thryoid as well but it is only done now typically in patients that are pregnant and can’t receive radioactivity).
In April 2013 I went in for the radioactive iodine procedure which effectively “kills off” your thyroid. It was terrifying and my last resort. Iodine is essential for your thyroid to properly function and it is the only gland in your body that takes it up and holds onto it, so to speak. When you take radioactive iodine your thyroid is rendered non-functioning and you are subsequently put on a drug that mimics your thyroid function called Synthroid. While the procedure itself is “just” swallowing a pill, the pill is radioactive so you have to go into a lab with technicians who are totally covered up and protected. It’s scary and intimidating. They hand you the pill with tongs out of a special protected container. From there you swallow it and then you must go home and be quarantined for three days to ensure your radioactive self doesn’t come in contact with other humans – particularly children – while the radioactivity is in your system. It is crazy. My roommate had to move out for those three days and I couldn’t leave the house. You have to take precautions such as flushing the toilet multiple times after you’ve gone to the bathroom, washing all your linens in hot water and keeping the shower running for 10 minutes after to ensure all traces of radioactivity are washed away. During this quarantine period I was lucky to have friends who sent me shows to watch, meals I could reheat, letters to open and read and lots of well wishes but it brought a new meaning to “cabin fever.”
Worse yet though on my journey? My first radioactive iodine procedure didn’t take. The measurement I was given wasn’t accurate and therefore I spent another nine months following Round 1 uncomfortable and no better. As a result it was determined that I had to go through the whole process again in early 2014. (Not to mention I had to pay for both procedures…) It was soul crushing, frustrating, exhausting and debilitating.
Like any disease you battle, the process of fighting this disease feels incredibly isolating. I felt depressed and alone and anxious and was left wondering if I’d ever feel better. I was petrified of the radioactive iodine process because I didn’t know what it would do for my future fertility or how my body would react. Meanwhile I was beating myself up every day for gaining so much weight and feeling like a failure. (All the while self-medicating with food…) I had next to no motivation, I was exhausted, jittery and experienced brain fog. My hair was falling out in clumps, my skin changed, my stomach was unruly, my heart was often racing and I could go from full-on sweating to physically shaking from being so cold. My emotions had me struggling to see how I would ever see this through and I felt sorry for myself regularly. As someone who is highly driven, I had zip/zilch/nada in the drive department. I secluded myself because I was embarrassed to be seen in my overweight/sweaty state and that only made things worse. In short: my body was on the fritz for years with this disease and it was brutal.
When I look back on this battle it all seems like a blur. It truly was a storm I was battling that took over many aspects of my life. I was in my late 20s and feeling like I was falling apart.
That being said, I found a light at the end of the tunnel. Following a successful second round of radioactive iodine in early 2014, I now take Synthroid every morning. While I despised the idea of taking medication every single day, Synthroid is what brought me back to life and had me feeling normal again. It did take several months to sort out the right dosage (too much Synthoid would send my heart racing and I’d lose the ability to fall asleep; too little I’d feel sluggish) but once we found the magic dosage, it was like I was rightsized in life again. Slowly I regained my motivation, my sleep improved, I began working out regularly and I began losing weight. Nowadays I get my blood drawn every three months to test my thyroid hormone levels to ensure my drug dosage is accurate.
Thyroid disease is an extremely personal disease because of how everyone’s body handles the hormone imbalances differently. Every day can be different and every person’s path back to wellness will, of course, be different as well. For me, it was the radioactive iodine that finally helped put me on the road to recovery.
I was extremely lucky to have parents who helped support me throughout the battle both emotionally and financially so that I could see a leading doctor in Manhattan. And my friends were guardian angels throughout providing unconditional love and support. I can’t imagine going through this experience without them.
Today I am healthier than I have been in a very long time. Nowadays I find that every morning when I go to take my Synthoid I am actually grateful for it as it allows me to operate with normalcy in life. This disease will always be with me and it makes weight maintenance extremely difficult (my metabolism is essentially now manufactured by drugs) so I always have to be careful about my diet and my workouts which is challenging on a daily basis. It took years of attempts to embrace my “new” body that emerged after my diagnosis. My days of being a size 2 were suddenly long gone and today I’ve now resolved the ownership I feel over my new body and keeping it fit.
It was a very, very long journey back to feeling like myself. The experience really showed me how important it is to take care of ourselves and prioritize our health and wellness. It made me realize it is ok to ask for help and to let other things take a backseat when you need to focus on you.
I, of course, am not a doctor so my experience is not meant to be guidance or any kind of medical advice but given thyroid disease is so common in women I felt it important to share how my journey went and how it was resolved. If you are having certain symptoms that feel out of the norm, go to a doctor and request they look at your thyroid hormone levels. And if you are battling thyroid disease know that things do get better!
As always I am here to answer any questions. I appreciate you taking the time to read this personal post. xx