Personal Story: How I Was Diagnosed w/ Hashimoto’s Thyroiditis
I was a healthy, 27-year-old woman, or so I thought…
February 20, 2015 changed the trajectory of my life forever. “Katie, your thyroid is the size of a golf ball, I can see it from here!” my gynecologist exclaimed as she was sitting at her computer several feet away charting intake notes during my annual women’s exam. I didn’t know what a thyroid was, what it was for or where it was in my body, let alone that it was the size of a golf ball. I was 27 years old and focused on my career as a geologist. Sure, the previous year I had gained weight and felt more exhausted than ever, but that was normal right? That was just what was supposed to happen as we got older, or so “they” told me. I had recently finished my Master’s degree while working full-time and I was feverishly running half-marathons as an attempt to keep my body in shape to fit in to the wedding dress I was planning to wear later that year - cue even more exhaustion. By that point, I had been taking hormonal birth control pills for about 11 years and was so disconnected from myself and my sweet body, it was no surprise I didn’t have a clue what she was talking about.
The rest of my appointment was a blur. I never looked forward to those appointments anyway (does anyone?), but that cold, metal speculum was the least of my concerns that day. After she pointed it out, I felt the lump in my throat, the size of a golf ball, but feeling like it was now the size of a bowling ball. The words she spoke felt like they went in one ear and out the other. I felt so helpless, confused and concerned as she told me they needed to draw blood to test TSH (whatever that was) and she would be in touch soon to discuss the results with me. I left the office feeling overwhelmed, scared and with so many questions I didn’t know I had. Over the next few days, I was trying to convince myself it was nothing to worry about, I was young and healthy, even though I could see and feel my inflamed thyroid…once I actually figured out where it was.
A few days later, I received the call that the blood test came back and my TSH (a marker and acronym that I was still not educated about) was elevated (14.23 uIU/mL). I didn’t know what it all meant, but she told me I was hypothyroid and started me on a low dose of Synthroid (Levothyroxine - 50 mcg) right away and recommended I return to my primary care physician (PCP) to follow-up with more testing. A week later, I was in my PCP’s office for another blood draw, this time testing TSH and thyroid antibodies. I still didn’t know what any of these markers were or what they meant. A few days later, I received the call that the blood test came back and my TSH was still elevated at 11.93 uIU/mL, but it had dropped slightly because of the medication I had started taking less than a week before the test. Based off my thyroid peroxidase and thyroglobulin antibodies being elevated at 535 IU/mL and 16.6 IU/mL, respectively, she diagnosed me with Hashimoto’s Disease, an autoimmune condition where the body attacks the thyroid.
The pituitary gland sends out TSH (Thyroid Stimulating Hormone) when it detects low circulating thyroid hormone in the body. When TSH is high, the pituitary is effectively trying to alert the thyroid to produce more thyroid hormone. Cartoon from verymom.com
I was in shock and disbelief. I didn’t know what to say, what to ask or what to do. How could I have a disease? Hashimoto? Who was that and was he related to Quasimoto? Was I going to develop a hunchback? What was going to happen with the lump in my throat? How could I fix this? So many questions flooded my head. Meanwhile, my PCP proceeded to tell me that women with Hashimoto’s tend to struggle with infertility and if they do end up getting pregnant that their miscarriage rate was “very high”. These are not the words you are expecting to hear 7 months before you get married. She told me there was nothing I could do about it, my condition was genetic, and my body would continue to attack my thyroid until the point at which it no longer functioned at all and I would have to rely on thyroid medication for the rest of my life. She referred me to an endocrinologist, a thyroid specialist (according to her), who would perform a thyroid ultrasound. Until then, I was to take an increased dose of Levothyroxine (75 mcg) and we would re-test TSH in 2 months. Once again, I left my appointment feeling overwhelmed, hopeless and that there was something inherently wrong with me. I was told I was broken and there was nothing that could fix me. I oscillated between believing what I had been told and knowing there was something more I could do. Ultimately, I decided my body wouldn’t attack itself for no reason and there had to be more to my story than this.
I spent the next 2 months researching. I found Dr. Izabella Wentz’s book Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause and read every word, cover to cover. I frantically took notes and started learning more about the human body, its systems, and how they are all interconnected. The good news… I wasn’t alone. Estimates suggest that 90 - 97% of those diagnosed with hypothyroidism in the United States actually have Hashimoto’s. The bad news… checking for thyroid antibodies is not part of the standard of care, even though they can show up long before the thyroid function is actually impaired. How could the trajectory of this dis-ease have changed if my antibodies had been detected before my thyroid was damaged enough to show up physically and in my blood work? What could I do to prevent more damage? Was there a way to reverse the damage already done? I kept digging and digging and digging. I learned about many different root causes, focusing on triggers (infections, pathogens and toxins), intestinal permeability, genetics, digestion, nutrient deficiencies and the role hormonal birth control may have played.
Two months in, I had been taking the 75 mcg dosage of Levothyroxine and I re-tested my markers before going to see the endocrinologist. My TSH, which standards for “Thyroid Stimulating Hormone” and actually comes from the pituitary gland, came back lower, but still elevated at 6.63 uIU/mL. Through my research, I found my lab “normal” range was 0.45 - 4.50 uIU/mL. However, the National Academy of Clinical Biochemistry indicated 95% of individuals without thyroid disease have TSH concentrations <2.5 uIU/mL. Further research revealed that functional medicine practitioners define an optimal range as being between 1.0 - 2.0 uIU/mL for a healthy person not taking thyroid medications. Clearly, I was not optimal. My thyroid antibodies, thyroid peroxidase and thyroglobulin, came back at 526 IU/mL and 19.1 IU/mL, respectively. I felt like I had a decent understanding of my thyroid, its relationship to my pituitary, and I was excited to go talk to “the thyroid specialist” about all the things I could do to make this better. I went in armed with questions, an understanding of my testing and hope for my future.
The endocrinologist explained that my thyroid looked like a piece of cauliflower (left) as compared to what a healthy thyroid looks like (right). I purchased my own plastic thyroid set as I set out to advocate for myself and to teach others how to advocate for themselves.
During my appointment with the endocrinologist, Hashimoto’s was confirmed via ultrasound and explained by using a plastic model of what a thyroid should look like versus what mine actually looked like. While that was difficult for me to accept, what was even harder to accept was when I asked my questions about whether birth control could be impacting my thyroid, if there were any dietary changes that could be made to lessen the attack, or pathogens/infections to test for, I was told no. There was nothing I could do. This was just the card I had been dealt and I needed to shut up, take my daily pill and deal with it - FOREVER. I left my appointment frustrated, angry and in tears. There was also a side of grit, determination and a little bit of “I’m going to show you” attitude that inspired me to keep going. I wasn’t going to give up hope and I was going to get to the bottom of my dis-ease. I knew healing was possible and I also knew that I was going to have to be the one who advocated for myself. There wasn’t a doctor, a pill, or a miraculous cure that was going to save me. I had to save myself.
Above are the notes I received from my endocrinology appointment. She told me my thyroid antibodies will be high forever and continue to increase through time and there was no point in re-checking them again in the future. When I questioned removing gluten, dairy, soy, etc. from my diet, she told me dietary changes would not make a difference. Finally, she told me hormonal birth control had no impact on my thyroid or the hormones it produced. Come to find out, she was wrong about all of it. I never went back and forged my own path.
