Many people know that I have Graves’ Disease, but they really don’t know that I have Graves’ Disease. It’s not a huge part of my identity (and I don’t want it to be), but the truth is, living with Graves’ Disease is a significant part of my life. I don’t really talk about it much, and have often made vague references to overcoming an illness that consumed most of the year 2016. I’ve always wanted to tell my story, and I think it’s finally time. Graves’ Disease can be much more difficult to diagnose and treat than other thyroid issues. I don’t want anyone to ever have to go through what I went through. Raising awareness is key.
I’ve gone back and forth many times about how exactly I want to share my thyroid journey. Some of what I will share with you, I actually began writing several years ago. Eight intense, single spaced pages of my struggles and my heart and soul. It’s completely overwhelming. So I’ll be breaking it up into a few more easily digestible parts, and sharing them as I go along. This first part is basically a recap of how it all began, an overview of the hell I went through pre-diagnosis. And this is just the surface. There is a lot more I could go into about this time in my life.
It all officially began a little over five years ago. Thinking back to before then, there were actually small signs and symptoms which had previously appeared. Frightening little episodes of unease scattered throughout the past years. But they were meaningless. Like lone puzzle pieces, that only making sense when snapped in together. There’s the bigger picture.
The Trip Where it all Began
February 2016. At this time, I was recently engaged, and about to start planning my dream wedding. It was one of those times in life that everyone says is the absolute best. It is a time to be savored and treasured. Life was pretty good. My then fiancé and I took a much needed break from New York’s bleak winter weather and fled to St. Barth with two other couples. The tiny island had been on my bucket list of destinations for years and we had a full seven days to relax and enjoy the laid back vibes and pristine beaches. I remember we’d been having a bit of a rough patch, as couples do, and this trip was supposed to be a fresh way for us to reconnect. Everything changed that trip, but in ways we could have never imagined.
On day two, after a morning by the pool, we all headed over to the sprawling open air restaurant Nikki Beach. We were ready to dance on tables and ogle the high rollers ordering bottles of champagne that cost as much as our rent. As soon as we sat down at our table, (next to a celebrity at that!), something felt wrong. I just felt off. There’s really no other way to describe it. I was equal parts dizzy, lightheaded, and short of breath. My heart was beating rapidly and I felt adrenaline coursing through my body. As somewhat of an expert in anxiety attacks (lol), I knew right away this was different.
Larry led me outside to a nearby bench. We discussed what it might be. Was I sure I wasn’t having a panic attack? The night before I had hit my head. Perhaps a mild concussion? Was I dehydrated? Were my braids too tight? I was fresh off of antibiotics for a nasty sinus infection, perhaps I was still sick? In the end, we decided that I was probably just dehydrated due to the heat and needed food, so drinking water and ordering a meal would be best. Determined to have a good time, I marched back into the restaurant, and did just that. I slowly recovered and pretty soon I was dancing in my bikini to the blasting EDM music, splashing in the waves, and chatting with our semi-famous neighbors. The episode left me scared, but as the day went on, my anxious thoughts faded away.
The following day, it happened again. That off feeling, that my body just wasn’t right. I tried to push it away. Everyone told me to relax. Eat some food, drink some water. I’d be fine, just like the day before, remember?
I felt sick at some point almost every day after that. The times of day varied, as did the duration. I had no interest in seeing a doctor on the island, as my symptoms were so fickle. I just tried my best to just enjoy our vacation. I’d been looking forward to this trip for months. It was hard to hide, but I did my best, only letting Larry know when I felt really bad as I was embarrassed to be causing any trouble with our friends. One of my oldest, closest friends who was with us just thought I was being dramatic. Which, in all fairness, isn’t a crazy assumption for someone who I’d known for 16 years and traveled with before.
Our last night of the trip, we went out hard. We drank and danced at Le Ti, a cabaret/bar/restaurant, until early in the morning. I didn’t sleep well that night, and the morning was a bit too rushed to make a real breakfast. After packing, I knew I was about to start feeling bad, way beyond a normal hangover. Sure enough, as we waited for our tiny plane over to St. Maarten, it came on strong. I could barely focus my eyes. Once we were on the ground, I was so overcome with fatigue and lightheadedness that I laid down on the ground near customs. Larry had the airport security call the paramedics. At this point, I’m sure this was now also a panic attack as I had the requisite numb hands. But there was something else, the underlying issue, which was causing me to panic.
The paramedics took my vitals, and were convinced it was just anxiety, and once again, a lack of food and water. So I ate huge plate of jerk chicken and rice. Over time the feeling subsided, and I was cleared to fly. The entire plane ride home, I was on edge, but we made it without issue. I went to bed feeling almost normal.
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I woke up the next day feeling like I’d been run over by a truck. It was like my body had been trying so hard to hold it together for the trip. Now that I was home, it had to be let out. I called out sick from work, which felt ridiculous as I’d just come home from vacation. I could barely sleep with the night sweats and muscle spasms. Most days I only moved from bed to couch, and called my mom to talk to though the worst “waves” of the episode as I’d call them. So, I went to the ER, but nothing was found. Then later that week, Larry was also feeling a bit run down with a fever. This was actually a relief. We thought maybe we both had Zika or some other mosquito borne virus, reacted differently to it, and it just needed to pass.
Eight Months of Hell
It never passed. Living like this was my new normal for the next eight months. For almost the entire rest of the year I suffered from dizziness, lightheadedness, anxiety, mood swings, heart palpitations, stomach issues, headaches, ringing ears, extreme fatigue and dramatic weight loss. I learned that certain foods and sometimes alcohol could trigger an episode (I now know that when I’m getting too hyper, I get reactive hypoglycemia). So not only was I feeling like absolute garbage, I became fearful of eating. Anytime I tried to snack on refined carbs, processed food or eat too heavy of a meal, I felt like I’d pass out. Butter didn’t cause any reaction, so I loaded it up on almost everything I ate in order to get in more calories.
I hated being away from Larry. I needed him close just in case I started to feel bad. He took me to the ER countless times, even in the middle of the night, as I was convinced that I was dying. I went to every single type of specialist I could think of that would see me and asked for several rounds of all types of testing – blood panels, MRIs, ultrasounds, allergy tests, parasite tests – you name it, I got it. A few blood labs came back a little off, but every doctor said I was technically the picture of perfect health. The depression and loneliness I felt during this time was unmatched. I just felt so utterly helpless and frustrated.
While dealing with this invisible and unknown illness, I tried to live life as best as I could. I went to events. I traveled. Most days were shitty. Some days I felt great. In the summer I had a nice stretch from July to September where I felt close to normal nearly every day! I would still post photos on social media, projecting a happy façade to the world. To a stranger, it may have seemed like nothing was wrong. My friends and family knew I’d been suffering a mystery illness, but I always wondered if any of them thought I was exaggerating or just craving attention. On the outside, I looked fine. In fact, since I’d lost a bit of weight, people kept commenting on how great I looked. On the inside, I was falling apart.
In October of that year, things got way worse. We went to a wedding in The Dominican Republic and every single morning I woke up with an extreme racing heart and no energy. I was terrified but felt it was pointless seeing a doctor when I’d been dealing with my symptoms for months. While that entire year Larry had been a much needed and appreciated source of emotional support – I now had to actually physically lean on him in order to walk to breakfast. After eating a bit of protein, the feeling would subside and I was able to put on a brave face and enjoy the rest of the day. Story of my life.
Finally, a Diagnosis
A few days after we came home, I went straight back to the cardiologist. Enough was enough. The palpitations and racing heart were my absolute worst symptoms. I couldn’t walk more than a couple of blocks without losing my breath. I’d already worn a Holter monitor twice over the summer (a device worn 24 hours a day for a week at a time to check for heart abnormalities) and passed a stressed test. The doctor never seemed particularly worried about my health. But this time she looked at me differently.
I had lost over 10 pounds in two weeks – and this was after previously losing 10 pounds over the summer. Quite honestly, I didn’t have the weight to lose. My bones were protruding and my eyes bulged out of my head. I had dry and scaly skin. My resting heart rate was 110. And my thyroid had grown a goiter, plain as day. She immediately said – “I’m checking your thyroid levels, I think you have Graves’ Disease”. I knew that this was it, I could just feel it. My blood had only just been drawn, but the doctor told me to wait outside while she had her nurse make me an appointment with an endocrinologist. The nurse came back and said they were booked for weeks. My doctor then called the office herself, and I had an appointment the next day.
October 14th, 2016. Mentally and physically exhausted, I went to the endocrinologist as hopeful as I’d ever been. There must have been a rush on my blood tests, as it was confirmed that day. I have Graves’ Disease. My levels were so off, she almost laughed to herself that I made it there. I was on the verge of a life threatening thyroid storm and my liver was failing. The doctor was incredibly surprised that we were meeting in the office and not the emergency room. Most patients with my sort of thyroid levels, she said, take themselves to the hospital because they feel so bad. Instantly my guilt and anxiety over the numerous unhelpful ER runs subsided. It was all coming together.
Hearing the endocrinologist confirm my illness, Graves’ Disease, was the sweetest music to my ears. All this time suffering – I always knew something was wrong. While my Graves’ Disease is now very well managed, I still experience symptoms every now and then. I have to be monitored extremely closely during pregnancy. At any point I might need surgery to remove my thyroid. While it may seem that I am young and healthy and full of life, dealing with Graves’ can actually be quite scary.
I hope to continue this series on Graves’ Disease and share more about my life and experiences with it. It can be incredibly hard to cope with. Do you deal with an autoimmune disorder or invisible illness? If so, I’d love to connect with you! We are such warriors and need to support each other to the fullest!