My Search for a Diagnosis: Hypothyroidism
When I was almost 16, I was diagnosed with Hodgkin’s disease. From July 2000 to November 2000, I received chemotherapy. In addition to chemo, my doctors placed me on Prednisone, to suppress my immune system, and birth control pills, in order to attempt to protect my ability to conceive in the future. The treatment saved my life, but my body was not the same afterward.
In the beginning, it was only that the weight I put on during chemo seemed there to stay. I had gotten chubby and the “moon face” characteristic of those on Prednisone faded, but a semblance of it still remained. I had always been a thin child, and my mother thought the steroids were the reason for my weight gain. I figured she was probably correct.
For the next five years, my health seemed to decline. I continued to gain some weight each year, but it was the other symptoms that made me feel crazy. For one, my depression seemed out of control. During the drive home from work or school, I would sometimes find myself fantasizing about driving off the road. There was nothing going on in my life that should have made me feel like that. I kept a journal, I read self-help books on depression, I even made a few trips to a psychologist to see if that would help. Nothing worked. When a doctor recommended Prozac for my depression, I brought the medication home, took one, and threw the rest away. I felt, deep down, that something else was going on. Prozac would only be a band-aid.
My cycles were also very irregular. When I took this issue up with my gynecologist, she simply recommended that I take birth control pills in order to regulate my cycles. She had no explanation for why they might be irregular. I did ask her to test me for hypothyroidism, because my dad had developed it in his 40’s and I thought I might have it. I was told my test came back “normal”. Like the recommendation of the doctor before her, her prescription for the pill was just another band-aid. I took those for a little bit, but my depression became even more unbearable on the pill. I also often experienced “hot” and “cold” days. For a few days I would feel nauseous, hot, and have a lot of energy. I would sweat profusely and my heart would beat very fast. Then that would stop and I would be back to feeling extremely tired, fatigued, and cold. Those days were enough to make anyone feel nuts.
What was going on in my mind was even worse. I had always been a fairly bright kid. I picked up on things easily and always had a very good memory. After my cancer, this slowly started to fade. I found I could not remember names and places anymore, and I started having “on” days and “off” days when it came to how well my mind worked. I was engaged in pursuing a music career after I graduated high school, and this affected me greatly in this area. When I would practice songs or record, I would find that there would be days that I just couldn’t concentrate or sing.
I also had moments where it seemed like my brain would just stop issuing commands and I’d become more clumsy. I went to visit my mom once, and when I was there I drove an automatic car for the week. When I came home to my manual Ford Escort, it was like I forgot what I was doing. Instead of parking the car in my driveway, I went up and over the sidewalk and literally drove my bumper into my sister’s bedroom. We lived in an apartment complex at the time, and my brain checking out on me cost me $750. I had no explanation for this, except to say I had an “off” day.
In 2005, I auditioned for a girl group in Los Angeles and was accepted. I was thrilled for the chance to finally have a shot at fulfilling my dreams. The production company, however, had an issue with my weight. They picked me with the understanding that I would lose 20 pounds. In reality, I wasn’t even overweight. But they were not asking me to be underweight, either. They just wanted me at the lower end of the “normal” BMI range for my height. I figured I could do it. The year I was in the girl group was one the most stressful years of my life. I found it nearly impossible to get to the weight they wanted me to be at, and I had frequent “off” days, where I found it hard to perform as well as I knew I could. I continued to literally inhale self-help literature, looking for the answer to my “craziness”. The story of the girl group belongs in a very different article, but it was the stress of the situation that finally led me to a diagnosis.
My depression, “off” days, weight issues, and strange physiological and psychological symptoms continued. Then, my period completely stopped for six months. I had had a few gray hairs before on my head, but now a lot were growing in. I would sleep for hours and hours and never feel rested. I was only 22. Seven months into my year there, I got shingles on my head. Shingles are a recurrence of the chicken pox virus in a localized spot. It is a disease that normally occurs in those with compromised immune systems. So here I was with shingles, no period, “off” days, depression that made me feel extremely crazy, and a whole lot of stress from my music career. I also had digestive issues, but I attributed those to my constant attempts at dieting.
Eventually, the girl group did not work out. My weight issue had a lot to do with it. When I left the group, I went on a quest to find out what was wrong with me. I researched everything. When I was doing my research, I finally made the connection. I had so many of the symptoms. The weight gain and inability to lose, the depression, the cold hands and feet, the digestive issues, the debilitating fatigue and the cessation of my period. I even had the puffy face and the missing outer eyebrows! When reading, I found out that the most common cause of hypothyroidism is Hashimoto’s disease. This is an autoimmune disease in which your body attacks your thyroid gland. It slowly eats away at it. When it first begins, patients often swing between hyperthyroidism and hypothyroidism. The symptoms of hyperthyroidism were much like what I was experiencing during my “hot” days.
I bought books, printed out all the information I could, and typed up my symptoms and printed those. I went to a natural foods store and bought myself a thyroid supplement. I also bought B12 and other vitamins that I read could help me to have more energy. Some of the things I read online said that the only thing that could really help me was to get on thyroid medication, but I was desperate. When I went to visit my father, I scheduled my yearly appointment with my oncologist. I was going to get all the tests I needed this time.
When I visited my oncologist, I went through everything I had learned, showed him the evidence I had to back up my own diagnosis for myself and requested specific tests that I wanted. I wanted him to test my TSH (the usual test for thyroid disease), as well as my free-T4, free-T3, and for thyroid antibodies. He told me he was very impressed with how much I knew about the disease and said that he doubted I had it at such a young age, but that he would run the tests. He also said that his wife had had sub-clinical hypothyroidism, and that when she was put on a very low dose of thyroid hormone, it helped her immensely.
So, he gave me a prescription for a very low dose until my tests came back. He also sent me to get an ultrasound of my thyroid. When I was getting the ultrasound, I was allowed to see it. My thyroid looked like it been through a sand storm. From my research, I knew a healthy thyroid gland would have looked a lot smoother than that. Mine looked like it was experiencing war. A week later, my doctor called. My TSH was 7.8 and I had a high level of thyroid antibodies. He told me that he was very happy that I was already on levothyroxine, as he would never want his own daughter without thyroid medication if her TSH were that high.
Later, I decided to call the offices of some of my previous doctors and find out how often my TSH had been tested and what the results had been. I had recently read that the American Association of Clinical Endocrinologists had issued a statement a few years before that recommended that the “normal” lab values for TSH be changed to .3 – 3.0. Many labs had not changed their values. When I got my paperwork, I found out that my TSH had been tested before by multiple doctors as part of my yearly check-ups, and that it had been hovering at 4.5 ever since I finished chemotherapy! Essentially, my thyroid had been producing an inadequate amount of hormone for 6 years. The stress of the year in Los Angeles had likely caused my condition to worsen. No wonder I had felt so terrible.
In the two years that followed, I switched to Armour thyroid (a natural prescription version made from porcine thyroid), and got my TSH down. In that time, my body miraculously sprouted underarm hair (I had never had any before), and my breasts increased an entire cup size, even though I did not gain weight. It appeared I had not had a chance to finish puberty because thyroid hormone helps regulate growth hormones. The arm pit hair was not exactly a welcome addition, but it felt good to know that my body was finishing the growing it apparently missed out on. In writing this article, I hope to give hope to anyone who might be struggling with the types of things I did. Getting a diagnosis was the best thing that could have happened to me. I can now continue to learn about my disease and do the things I need to do to manage it and feel well!