Imagine at the age of 16 waking up on the ground with your friends standing around you. Just a second ago, I was playing my clarinet at marching band practice and now I'm looking up at the sky wondering "what just happened?" This was the first major incident that led me down the long, tedious journey to discovering hashimoto's.
I was an average 16 year old, loved running, was an A/B student, and was started to think about what colleges would best suit me. During my sophomore year of high school, I noticed that I was starting to lose weight and become very tired. I mean I was a very active and ambitious girl so sleeping until 1pm on the weekends and waking up with muscles aches and headaches was something that was a hindrance for sure. I continued to push through the fatigue and started to notice that concentrating was becoming difficult too. Then came the worst symptom for me, depression. Let's face it, every teenager goes through teenage angst but this was something more. Depressed, angry, fatigued, exhausted, and frail, that's not how a young, robust 16 year old should feel.
One day while at marching band practice I was feeling very lightheaded and of course brushed it off. Texas heat is no joke so I just chalked it up to your typical Texas style overheating. Before I knew it, I was waking up to a bunch of frantic teachers and peers. I was quickly given some oral glucose and taken inside to cool off. After this event, I went to a local doctor and was told that "all your labs look fine, I think you just got too hot." I didn't feel fine though and my weight was continuing to drop. I saw 2 additional doctors that recommended that I have a "mid-day snack.” I was told again that my labs were normal and even though my blood sugar results were within normal range that a Mid- day snack never hurt anyone so just give it a try and see if the symptoms resolve. After talking with 3 doctors, my poor mother and I were beginning to think that maybe I was “fine” and that maybe I was just an over dramatic teenager.
We decided to attempt one more doctor appointment. Upon arrival, my blood pressure was 70's/50's, which is clinically hypotensive, and my heart rate was in the high 40's. I was sluggish and exhausted as usual. The doctors looked at my mom and said that she highly recommended that I go straight to the ER. I flat out refused!! I explained that I had been dealing with this "problem" for months now and that I would not go to the hospital until I knew what was going on. The doctor gave into my request and order labs. She asked if my TSH had been checked and after my mother and I gave her 2 blank stares, she decided to order a TSH. Within a few days, we were notified that my TSH was elevated. My mom and I breathed a sigh of relief; we finally had an answer and guess what... I only had to take a 1 pill for the rest of my life to fix this problem!
I was immediately started on a low dose levothyroxine. I started to notice that I was having less dizzy spells but I still had all my other symptoms. I was down to about 80lbs at this point and was desperate to put on some weight. I started to think that this was just going to be the new Tina. The last two years of high school, I constantly struggled with strep, bronchitis and upper respiratory tract infections. I even ended up in the ER with pneumonia at one point. I pushed myself through the fatigue and depression and hoped that one day I would feel "normal" again.
After I graduated from high school, I was off to college!! I packed up my car and headed to Austin. With one bottle of levothyroxine and a passion for helping others, I was ready to start my dream of becoming a nurse.
My first month of college was great but I quickly ran into an issue. I was out of levothyroxine and I didn't have insurance. I was also unaware of the free student clinic on campus. After some deliberation, I decided that the medicine didn't really make me feel that much better and being a poor college student, I didn't really have the money to make an appointment and have labs redrawn so I stopped taking my levothyroxine completely. I know this was not I the best decision but at that point I was not educated on how important the thyroid was for basic daily function, and I had already come to terms with my brain fog, fatigue, and depression. As I said before this was the new Tina and I would just push through it. I eventually found that exercising was my way to combat my depressed mood and tiredness. I became a gym rat and would work out 1-2 times a day and would also go to lacrosse practice. Working out made me feel somewhat normal again but the feeling was temporary so I found myself exercising any chance I could get.
During this time period, I met a boy… we started dating and I soon met his family. Upon meeting his parents, I discovered that they were physicians in Mexico. As you can imagine, they were not happy to hear that I was not taking my medication due to financial reasons and that summer, I was off to Mexico to study Spanish and to see yet another endocrinologist. After I returned from Mexico, I started my semester back up again. I was communicating with my doctor in Mexico through my boyfriend’s parents and was dosed based on my symptoms. I continued this type of treatment until one day I felt as though I was having a heart attack. I remember like it was yesterday. I was standing in my Anatomy Lab when I started to feel a crushing chest pain, became sweaty, and felt dizzy. I dropped everything I was holding and ran out of the room into the hall. I didn’t want anyone to see me under these conditions so I wanted to just be by myself. After a few minutes of feeling like I might be in some serious trouble, my symptoms started to resolve and was able to return back to class. Scared and confused, I called my doctors in Mexico and was told I had experienced thyroid toxicity. I was advised to cease my medication and continue a lower dose when my symptoms had resolved. I verbally agreed with my doctors but I had already decided I was done with thyroid medication. Enough was enough so I discontinued my medication permanently.
A couple of years went by and I had finally arrived in nursing school. I also by this point had been done with my thyroid medication for a little over 2 years!! My concentration was poor, my hair was thinning and the fatigue was unbearable. I was finally at my breaking point. My grades were starting to suffer and I was always exhausted. The final straw occurred while I was driving home after one of my classes. I had made the drive home hundreds of times but this day was different. I reached the entrance of my neighborhood that day and had a complete mental block. I started to panic; “Where did I live again?” I drove around frantically trying to recall the directions to the house but nothing came to mind. I pulled over and gathered my thoughts. “Was I losing it? Was the stress of school and working finally catching up to me?” After having a moment to myself, parked on the side of the street, I called my roommate. I asked her to not judge me for what I was about to say. I explained that I was in the neighborhood somewhere but for an unexplained reason, I could not remember how to get home. After an awkward pause, my roommate began to guide me home. This was my wake-up call. My denial period was over, and I needed to get to a doctor and quickly.
Within a week, I had seen a physician at the campus clinic and received lab results. I was then reprimanded by my physician and told to never stop taking my medication ever again. She explained that my TSH was very elevated and if I wanted to feel “normal” again, I would need to take my pill every day for the rest of my life as directed by my MD. I took her advice and complied to my doctor’s orders. After a few weeks, I noticed an improvement in my concentration and in my grades. I continued to see this physician for about a year and half before I graduated from college. In May of 2010, I was so excited to walk across that stage and receive my diploma I had worked so hard for but there was a catch, I was once again heading out into the world with one bottle of levothyroxine and no insurance.
I spent day in and day out applying for jobs and waiting anxiously to hear back on job opportunities. I was also dreading the day my levothyroxine bottle would run dry. One month out of college, I once again found myself with no medication and no resources to refill my prescription. I was soon hired and provided insurance. I immediately made an appointment and was seen by a local endocrinologist. My TSH was once again extremely high. My MD scolded me for my non-compliance and I started my levothyroxine.
I continued for 4 years adjusting medications, switching physicians, and struggling with my usual symptoms. In 2014 I started to develop skin rashes on my hands along with my other symptoms of hair loss, fatigue and brain fog. I also experienced frequent illness and at one point had scarlet fever. I approached my endocrinologist and was met with labs that “didn’t make sense.” My doctor could not explain why my symptoms persisted and were even worsening. My levothyroxine was discontinued and I was started on Synthroid. When that was unsuccessful, I was placed on Armour thyroid but experienced chest pain and anxiety. I immediately stopped this medication and was put back on Synthroid. I was informed by my doctor that I must have been to blame for the discrepancies in my lab work. My labs just didn’t make sense so I must have been non-compliant.
I was tired of being accused of lying and being non-compliant. I was tired of unanswered questions. At one point Ii asked my endocrinologist why I lost weight so rapidly when my thyroid function was off versus gain weight. I had studied medicine so I knew what the textbooks said and I did not fit the “hypothyroid” profile. I was met with answers such as “well maybe you are depressed and you don’t eat as much.” I was quite the opposite. I had an unrelenting appetite that I could not keep up with!! I took my medication as directed and all I wanted was to feel normal again. As I struggled through this whirlwind of brain fog and frustration, I also noticed I was starting to develop a dull aching pain in my abdomen. At first this pain was manageable with ibuprofen on occasions but after a few short weeks, the pain intensified and became constant. I couldn’t help but wonder “what is wrong now?” I noticed that my menstrual cycles were becoming increasingly painful and very heavy. After a few months, I finally succumbed to the pain and decided to start a new journey into the conventional medicine world.
My family has always struggled with endometriosis. My mother, grandmother, great aunts, and great grandmother all had cases of endometriosis that ended in early age hysterectomies. I approached my appointment with my PCP explaining my family history and my thought process behind a diagnosis of endometriosis. She ordered an U/S and referred me to an OBGYN and a GI specialist. My GI appointment was quick, I was given Bentyl and told that all of my labs were normal. Unless I wanted a colonoscopy, there was nothing to treat from his stand point. I then went to see my OBGYN, I was once again met with a doctor who did not listen to what I had to say and disregarded my symptoms. I was informed that I did not present like a typical case of endometriosis and the Ultrasound was normal. I was given birth control and a diagnosis of Mittelschmerz.
The pain intensified and it was started to affect my work and personal life. I couldn’t run, dance, or do any of the activities I once enjoyed. I took Zofran almost daily to fight the nausea the pain was inflicting. I made another appointment with my OBGYN and pleaded for an intervention for endometriosis. She explained that there was no way that this was endometriosis and my birth control was changed. After a month or 2 on this medication, I contacted my MD again regarding the increasing pain and nausea I was experiencing. I was then called in to have Lupron injections. I endured 2 rounds of Lupron which is 6 months of menopause. I now had a new set of issues. The side effects of the Lupron included hot flashes, mood swings, fatigue, nausea, and HA. Not only did I have new problems to add to my list but the pain was still there and just as intense as it was previous to these injections. I had literally hit rock bottom. I didn’t know who I was anymore. I just wanted to feel normal again.
After realizing that the Lupron did nothing but exacerbate my situation, my OBGYN agreed to send me to an endometriosis specialist. Within 2 weeks of my initial appointment with this specialist, I was in surgery having a laparotomy. I was so excited that someone had listened to me, the patient, instead of just looking at labs and a text book.
After my lap, I was referred to another GI doctor. This GI specialist had an elimination portion to his program and he also offered Klonipine as a way to decrease my abdominal pain caused by bowel spasms. I refused the medication but agreed to take gabapentin. I soon started developing side effects such as dizziness and eye floaters from this medication. I was at a loss for what to do. My thyroid labs were still not adding up, my pain was controlled but now I had bowel and bladder spasms that would have me running for the bathroom at any moment, and I didn’t fully understand my current treatment plan for my GI issues. Enough was enough, it was time to take charge and find my own path to health and wellness.
I had already started an elimination diet but I still was not back to my normal self. I wanted to know what caused of all of this. Why did I have these issues? Why was I told by medical professionals that I didn’t fit the mold of a particular disease process so you must not have it? I started doing my own research on autoimmunity. I left my stressful job in the hopes that I would have better luck controlling some of my symptoms. I knew I had to make some drastic lifestyle changes to be healthy so I made an appointment with the clinic of Amy Myers MD. I presented to the clinic in a bit of a mess. The month prior I had battled multiple rash break outs that baffled my doctors. My thyroids levels were off and I had started taking high dose iodine after doing some of my own research on thyroid function. I was desperate to try anything.
Under the care of Amy Myers MD, I was started on WP thyroid and treated for SIBO. My TPO has significantly dropped and I feel like I am becoming a Tina that I like and enjoy. My journey to functional medicine has been an interesting one but regardless of the pain and emotional struggle, this journey has lead me to a healthier version of myself. I don’t wish to be normal anymore, I wish to be optimal. I wish to help others who have been through similar struggles and prevent some suffering for those who have yet to start this journey.