My Hashimoto’s Thyroiditis Story, Part One: Journey to Diagnosis

Now that I’ve covered the topic of why I’m so determined to be a dancer, I suppose that it’s time to address another one of the points listed in my very first introductory post: outlining the story of my journey with Hashimoto’s thyroiditis. The fact that I overcame this autoimmune illness is one of my proudest achievements, and I consider myself a great example of how healing is entirely possible if you stay patient and diligent.

Diagnosis of autoimmune disorders are on the rise lately, especially in the US. Many people attribute that to the development and advancement of the “fast and easy” society that’s been adopted over the past few decades. Creating such a society, while a seemingly good idea in theory, has resulted in artificial toxins being injected into nearly everything we consume in our daily lives, particularly in the food we eat. Buildup of such toxins in the body naturally results in dysfunction and chronic illness. However, that whole spiel isn’t today’s topic, so I’ll leave off there (for now). The bottom line is that the western world is experiencing what seems to be an epidemic of these autoimmune illnesses, leaving many people frustrated and hopeless. Through this post I want to encourage you that there is hope, and healing is definitely possible.

I want to preface by saying that early diagnosis was one of the biggest factors in my healing. A lot of times autoimmune symptoms don’t start showing until later in life, and most who have them aren’t diagnosed until middle age. When I received my diagnosis, I was seventeen. Because I was tested so early, I was able to catch the illness before it had gotten too far, and reverse it before it could go any further. To compare, my sister was twenty-four when she was diagnosed with the same illness, which is still very young. Yet hers was already much more advanced than mine, and her healing process more grueling. So I encourage you, if you’re experiencing any strange symptoms, don’t rule out Hashimoto’s and other autoimmune illnesses. Insist that your doctor run the tests, whether or not they think they should. Early diagnosis can make the process of healing so much smoother. But, rest assured, if your diagnosis came later, getting well is still entirely possible.

I suppose we should begin at the beginning, going way back to the days of my infanthood. I’ve had strange symptoms my entire life. I was always sick, and packed with more mucus than a baby had a right to have in their tiny body (cute, right?), so much so that I had to undergo surgery to remove a mucocele from the back of my throat when I was three months old. Every sickness I had was to the extreme, and every little cut I received as a result of childhood antics got infected. Little did we know at the time, excessive mucus and pus is a sign of inflammation in the body, which is one of the main components of Hashimoto’s. But my afflictions were never severe enough to prompt any sort of deeper investigating. Everyone assumed I was another victim of the family’s notoriously difficult allergies, and that was the extent of our wonderings.

It’s worth it to note that throughout my childhood, my parents worked and my sister and I both had incredibly packed schedules. No one had much time to cook healthy food, or at least we thought we didn’t, so we consumed the epitome of the modern American diet. My favorite food was Kraft macaroni and cheese. I was a fiend of Hot Pockets, Pizza Rolls, Poptarts, and Eggos. We drank soda every night at dinner, and my favorite thing to have packed in my school lunch was a peanut butter and marshmallow cream sandwich. All of that in my body became a breeding ground for my symptoms. 

I don’t blame my parents at all- everyone in my family was busy and needed easy meals, and we didn’t know any better. But eating such things, especially if you already have an intolerance to them, causes inflammation in the body. Buildup of that inflammation along with a genetic predisposition (along with my sister, cousins and grandparents of mine also have autoimmune and thyroid issues), result in conditions such as Hashimoto’s.

The tipping point of my long journey to diagnosis happened in the late spring of 2015. My family was making a two-and-a-half hour drive back to our hometown to attend my cousin’s college graduation party. That morning, everything was fine, but as we started to near our destination, I started to feel a bit strange. It was a feeling that would become very familiar to me over the next couple of years: one I describe as “not-quite nausea”. It’s a feeling of anxious unease bubbling throughout my insides disguised as the urge to throw up, with the absence of the characteristic rolling stomach and watering mouth that indicates an upchuck approaching.

At the time it was very mild, though. I equated it to carsickness, even though I didn’t have any history with that affliction. I attempted to ignore it, but as the day went on, I felt worse and worse and worse, and ended up forgoing attendance to the party. While my family attended, I laid up in my grandmother’s bed, writhing in agony that was agonizing in the fact that it was undescribable- a general uncomfortable, sick feeling that came over my entire body, a feeling that couldn’t be described as nausea or pain or fever, increasing in intensity by the hour. I suffered through that for the rest of the night, no one in my family able to figure out what might be wrong with me. I couldn’t describe my symptoms in any way besides saying “I feel sick,” and I couldn’t pinpoint a sense or area of my body. 

The next morning, I felt weak and puny, but altogether better. When I went to the doctor, they suspected anemia. They did a basic finger prick test for my hemoglobin, which came back entirely normal and disproved having one component of anemia. However, the doctor counseled us not to rule it out entirely, without even thinking to test the other things that were factors in iron levels. He suggested I eat more spinach and red meat, and that was that. For a couple of months my family incorporated an increased intake of iron in our diet, but I felt fine and had a summer intensive in New York coming up, so we let ourselves fall out of the habit.

Flash forward a couple of months to the 2015-16 academic year. I was living in Washington, D.C., attending a new ballet school. That was when the true downward spiral began. 

The apartment my mother and I lived in was old and grimy- filled with mold, a common trigger for autoimmune symptoms. The other allergens in that area were already rather strong, and my mother worked full time- sometimes with ridiculous hours- so we weren’t eating our healthiest, though we tried when we could. Within a very short time of living there, I dropped weight rapidly until I appeared almost emaciated, bones jutting out all over my body. My peers and family members whispered behind my back of an eating disorder even though I was eating more than I ever had in my life. My mother and I, who knew better, equated my weight loss to stress, adolescence, and the fact that I was constantly ill- which I was while living there. I had developed breathing problems, I felt constantly dizzy and weak, and even my teachers commented on my sickly pallor. I had to miss class constantly, and we went to countless doctors and specialists, each giving a vague answer that cleared up nothing. The general consensus seemed to be that all of my ailments were the result of allergies and existing problems from a genetic predisposition to have extra fluid in my head. But my mother and I knew that there was a deeper problem. We were just too tired and frustrated to look very much harder.

Our first step into my full diagnosis was going to an acupuncturist for my allergies and anxiety. On my first visit, she told me that there was a problem with my spleen and that I had an “immature digestive system,” meaning that I wasn’t absorbing nutrients from my food, which explained my weight loss. Even though I was eating more and worse than I ever had before, my body was taking in none of it, so what I ate didn’t make much of a difference. On the contrary, I might as well have been starving myself. She also said that I was “blood deficient,” which baffled us a bit, but we weren’t provided much more information. She prescribed me an herbal dupe of Benadryl and a supplement made of cow liver for my allergies, and again, advised me to eat more red meat.

A lot of what the acupuncturist said to us didn’t hold up well when repeated in doctors’ offices, but looking back, there was a resounding truth in her diagnosis that we wouldn’t figure out until a year and a half later. In the meantime, I took the supplements she gave me and applied her dietary counsel, trying to eat healthier all across the board. A few months later, I had moved away from D.C. and was feeling overall improved. I was in a somewhat less stressful environment, so we decided that the bulk of the severity of my health problems stemmed from anxiety.

Things were mostly smooth-sailing health-wise during the 2016-17 academic year. I had a couple of injuries that I couldn’t quite shake, but we didn’t really put two and two together. In the spring of 2017, however, my second “attack” happened.

I woke up on a Saturday morning feeling a little off, like you do just before you get sick but aren’t quite sick yet. I had important rehearsals that day, so I tried to shake it off and went to ballet class, anyway. Throughout the class, I was more fatigued than usual, but didn’t notice anything severe until the last combination of the day. While I labored through repetitive Italian fouettes, a familiar feeling of indescribable discomfort came over me, and I felt slightly as if I was going to pass out. It was the end of class, though, and I had a couple of hours of rest time, so I didn’t panic and figured I’d feel better after I sat down for a bit. Relatively unfazed, I took my lunch and went to eat while chatting with a friend.

As I pulled out my food, however, my stomach turned. Every organ in my body seemed to be screaming “I do not want to eat right now,” which is never an issue with me. (I’m someone that’s still able to watch cooking shows and crave cakes and macaroni and cheese while laid up with food poisoning or the stomach flu.) That day, though, I had a long break ahead of me, so I put my sandwich away and figured I’d try again in an hour or so. I decided it would be better if I ate later anyway, so that I would be better fortified for the long afternoon of rehearsals.

While I sat there having a conversation, however, the way I felt rapidly declined. I stopped registering what was being said to me, a black vignette on the edges of my vision swelled bigger and bigger until it threatened to overtake my sight completely, and I had the overwhelming feeling that if I didn’t lay down instantly that I was going to end up doing so involuntarily and completely lose consciousness. I knew I couldn’t go to rehearsal in that state, so at my breaking point I excused myself from my friend and called my parents in tears to come pick me up. I was so weak that I couldn’t even speak to my director about why I had to leave rehearsal, and I had to be practically carried out to the car.

Of course, we went to the doctor that night. I remember laying on the couch of an urgent care clinic because sitting up made me feel awful, nursing a ginger ale because the familiar not-quite-nausea feeling prompted suspicion of a stomach bug. Once we were back in an examination room, the nurse attempted to take my blood pressure, which was an absolute ordeal. The moment I sat up my vision would go entirely black and I would begin to keel over. She explained that I needed to be sitting up in order to take a proper reading, but I couldn’t stay up long enough to complete it. We convinced her to try and take it both sitting up and lying down, which prompted strange results. Lying down, my blood pressure was at my usual, obnoxiously healthy level. The moment I sat up, it would bottom out.

Then they went to take a blood sample- I don’t remember what for- which resulted in another ordeal, as they had to squeeze my finger endlessly, rubbing up and down my entire hand, just to extract a tiny drop of blood. It simply wasn’t flowing right in my body, and there was clearly a deeper problem. Yet as my finger bruised, the doctor came in and decided that I likely had a strange flu, despite the fact that I tested negative in all strains. No one thought to look any deeper. No one thought to make the obvious connection that these were anemic attacks despite the fact that my hemoglobin read normal, and because of constant dismissal from other doctors aside from the initial one who suspected it and my acupuncturist, my parents and I were convinced by that point that I had never been anemic in the first place.

The next day was much the same as my last incident- I didn’t feel great or up to doing anything, but I was still much better than the agonized state I had previously been in. For having a “flu,” I felt almost normal again rather quickly, but still had to take a week off of school because literally everything I ate would pass straight through me within minutes of consuming it- my body wasn’t digesting or absorbing a thing, which would end up making my problems worse in the long run.

Eventually the storm seemed to pass, and I returned to normal activity. Throughout the last chunk of the school year, I started to gain a bit of weight- which wasn’t that noticeable at the time. We just figured that I was healthier and in a kinder environment, and attributed it to the fact that I was dealing with a chronic injury and actually didn’t dance at all the last month of the academic year.

However, as a person that had to stare at myself in the mirror constantly and was in an environment that encouraged unhealthy body standards, I was a bit self-conscious about the weight gain, and I had an instinctual knowledge that my health wasn’t quite right. Hashimoto’s was becoming a buzzword in the dance community, so I looked it up and recognized some of the symptoms in myself. However, I can be a hypochondriac, so no one took it much to heart, figuring that I was just trying to make excuses for letting myself go a bit. On that note, I let concerns drift into the background.

Then came my 2017 summer intensive. At the end of the program we had personal meetings with the director, most of which involved being pulled into the office and being given thinly veiled insults that could in no way be spiffed up to resemble constructive criticism. Sure enough, when I had mine, I was told that I had a weight problem and that I needed to get my thyroid checked. At first, my mother and I were aghast. For a normal person, I was in no way overweight. My BMI was on the low end of normal, I still wore the smallest sizes of clothes, and most people outside the world of ballet commented on my thin figure. However, there was no denying that definite changes had taken place in my body. My muscle tone had deteriorated to almost nothing, I had little pooch in my belly that didn’t go away no matter what I did, and I had a general puffed, bloated look all about me. At first we believed that the thyroid comment was just a fancy way of calling me fat, but to our disgust we found accuracy in the statement. Since I was already exhibiting symptoms and had suspicions of more, we decided to go get tests done, for our own peace of mind if nothing else.

Luckily, we went to a doctor that listened to us and jumped at the chance to work with us. She knew exactly what to have tested and wrote up orders for everything, even if the chance that I had problems with certain things were low. During the first week back at ballet school, I had six vials of blood drawn, which resulted in disaster. For the next week afterward I felt terribly weak and sickly from the extraction, which was not a good way to start your senior year. Little did I know, things were about to get much more difficult, and that was only the beginning.

I remember the day we got the results in. I had already frustrated from a harrowing day, and I knew something was up when I saw that my mother had come inside to pick me up instead of waiting in the parking lot. When I approached her, she told me that my test results had come in, and immediately burst into tears. My stomach dropped down to my toes, and I started to panic. Oh, no, the results were terrible, I remember thinking, my body beginning to shake, my anxiety romping completely free in a mind already going a million miles a minute. I’ve got terminal cancer or something. I’m definitely dying. Oh crap, I’m gonna die!  I had to ask several times for my mom to answer me, which only increased my fear and further convinced me that there was something horribly, fatally wrong with me. When she finally composed herself enough to relay my results, my unrealistic fear melted into relief that was soon eclipsed by the overwhelming feeling of my life about to change.

This story ended up being longer than I originally anticipated, so I split it into two. You can find the second part here.