My Story
My hypothyroid journey started about ten years ago. My life was hectic at the time, and I attributed my fatigue and weight gain to stress.
When my hair started to fall out, I sought help. I'd just moved to another state, so I had to begin a new doctor/patient relationship. I'd had the same doctor for years in my former state and had always been happy with the level of care I received. I always felt welcome in his office. He always listened, and he always knew how to fix my health issues. He retired not long after I moved to another state. In my search for a new doctor, I quickly learned that my former doctor's medical acuity and level of compassion wasn't typical. He'd spoiled me into thinking that all doctors would provide the same level of care.
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During my first visit to my new doctor, I was relating my symptoms to him, confident that he was interested and would help me. When I told him that my hair had begun to fall out, he said this: "I think your hair is pretty." I kid you not, that is precisely what he said to me. I was furious. I told him that I hadn't come to his office seeking compliments. He smiled and prescribed me Amitriptyline to improve my mood. I didn't take it.
I was naive enough to think that my experience was a one-off thing. I went on to see several more doctors. I was told at various times to: join Weight Watchers®, join a fitness gym, go to a spa to get my dry skin treated, seek counseling to deal with stress, fatigue is normal for someone in middle age, and I have to accept that I'm getting older. At some point during this insanity, I came down with a stubborn case of bronchitis that required several rounds of antibiotics to clear up. I was "diagnosed" with chronic fatigue immediately after the treatment and told that it would clear up on its own within six months despite me complaining that the fatigue had begun long before the bronchitis. My protests fell on deaf ears.
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My symptoms continued to progress until I found myself in the hospital emergency room with high blood pressure. My systolic pressure was 186 on arrival, and 165 when I was sent home with a prescription for Lisinopril. I didn't tolerate the Lisinopril very well and found myself back in emergency with a swollen throat and inability to urinate. I was sent home with a prescription for Bystolic, which I could tolerate. After seeing several specialists, one of whom was a cardiologist, I was pronounced healthy despite needing a blood pressure medicine for unexplained high blood pressure. [But then I was in middle age so maybe it's normal for middle-aged people to have high blood pressure.(sarcasm) ]
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I eventually found myself in the office of a very sympathetic (initially) endocrinologist. She ordered masses of tests, and we discovered that my T4 was low. I was prescribed Synthroid. My blood pressure issues cleared up within the first three months, and I stopped taking Bystolic. My hair stopped falling out, but didn't grow back. The fatigue improved very slightly. I continued to gain weight. My early-middle-age weight before my thyroid issues began was 130lbs. I'm 5'6" tall. I weighed 225lbs. when I was prescribed Synthroid. I gained another 25lbs. in the two years after starting Synthroid. My doctor, although always pleasant, seemed to lose patience with me. She began asking me a barrage of questions regarding my eating habits, particularly about junk-food snacks and portion sizes. She asked me the same questions every visit. I've been a lacto-ovo vegetarian since my early twenties. My diet was and is sound. I was athletic in my youth, but crushing fatigue gradually reduced my ability to exercise.
If Your Doctor Doesn't Listen, Find Another One
I don't know if it's because I'm a woman, or because I was fat, but my doctors seemed to pre-judge me on sight as a lazy over-eating slob. My complaints about fatigue and weight gain were always answered with: "Mind your diet and start exercising."
Make Your Doctor Listen
This is common advice, and I was told this too. What I learned was; the more insistent I became, the more determined my doctors were to label me a "difficult" patient.
Sometimes They Take It Personally
When I finally found a doctor who ordered more than the usual run-of-the-mill blood tests, we discovered that my T4 level was too low. I was prescribed Synthroid. My high blood pressure normalized, and my hair stopped falling out, but it didn't grow back in. I still felt tired and sick all the time.
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My doctor did her job; she ran tests and prescribed medicine. It couldn't be her fault, so it had to be mine. Her supportive demeanor became subtly accusatory.
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The old familiar rounds of questions began again. "How much do you eat?" "How often do you eat?" "What are your portion sizes?" "What kinds of snacks do you eat?" "Do you exercise?"
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I heard the same questions each and every visit.
I Decided to Blaze My Own Trail
I couldn't get anyone to take me seriously so I had to do my own research. I don't work in the medical field so this hasn't been easy, but I've learned some things that have really improved my overall health. I'm not cured, and I'm not trying to offer a cure to anyone else. I'm just trying to give you some helpful tools that I wish I'd had at the start of my hypothyroid journey.
I was frustrated with myself for not getting healthy. I was frustrated with my doctor for not believing me. But then I started to think that perhaps my doctor was at the limit of her abilities, and was grasping at whatever she could to figure out what was wrong with me. If she couldn't figure it out, then how was I going to get better?
I was fed up with feeling sick, and I was fed up waiting for a doctor to make me well again. I had to do it myself. I began a journey of self-education. It's been difficult as I'm not trained in a medical field. Over the course of a year-and-a-half, I slowly began to put pieces together and am gradually getting healthier. The first improvement I noticed was healthier skin; the dryness left and it became more supple. My insomnia gradually reduced until I could sleep through the night. Then the weight started to come off, and I felt more energetic. My hair slowly became thicker; it's not as thick as it was in my youth, but it's improved. The 75mcg of Synthroid I was taking was reduced to 50mcg.
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My low-thyroid journey isn't over. I'm not cured, and I don't know if I ever will be. But I feel better. I'm happier, and I'm living an active life again. My success spurred me to start this website and write an ebook in the hopes that someone else might benefit from my experience. I don't promise a cure for hypothyroidism, and I'm not pretending to be a medical doctor. I'm just trying to share some information to make this complex health problem easier to understand and easier to manage.