I like to say that my Hashimoto’s diagnosis was a miracle, but it certainly didn't come easy. For more than a decade, I battled a mystery illness. I saw doctors and specialists who told me I was fine and sent me on my way. For a while, I believed them.
When I was 27, I became pregnant for the first time. It was a complicated pregnancy, and I spent several weeks on bedrest. I eventually developed pre-eclampsia, causing my son to be born four weeks early.
As a new mom, it was easy to write off my health problems as side effects from a complicated pregnancy and the stressful, sleepless first few months of motherhood. But as my son grew, I didn’t feel better. I focused on my diet, exercised five days a week and could not lose a pound.
When my son was three, I just couldn’t keep up anymore. My husband would take him to the park on the weekend, and I would stay home and sleep because I was too tired to play. I saw a family doctor who offered prescription weight loss medication and Xanax. I went to my obstetrician, who tested my thyroid and iron levels and said I was fine. Frustrated, I referred myself to an endocrinologist.
The endocrinologist treated me for various vitamin deficiencies. I made a diet change, took the supplements, and exercised every day. My exhaustion improved, I lost a few pounds, and I started to feel a little better. We decided to try for another baby. I miscarried at 8 weeks. My obstetrician had no answers. My TSH was not tested. My thyroid antibodies were never tested.
Three months later, I was pregnant with my daughter. I suddenly felt better than I had in years. I was able to work, care for my son, grow a healthy baby and participate in my life again. Unfortunately, that energy didn’t last.
When my daughter was three months old, exhaustion hit hard. I lost the ability to keep up with my children. Leaving the house became totally overwhelming. Going to the store left me needing a nap. Before long, I was sleeping every time my daughter slept, which is a great survival strategy for raising a newborn – but my daughter was six months old.
After her first birthday, my exhaustion took over, and I developed joint pain so severe that snapping a onesie or buckling a car seat would put tears in my eyes. I was constantly getting sick with viruses that didn’t affect the rest of my family. Something was seriously wrong.
For my 34th birthday, I decided to pursue a diagnosis. I saw a new primary care doctor. She ran lab work, told me I was fine, and offered no solution. I asked to see a rheumatologist. I waited three months for an appointment, reading everything I could find about joint pain and autoimmunity. I gave up gluten and took probiotics. It helped tremendously with the joint pain, but didn’t solve my problems.
The rheumatologist ran tests for lupus and rheumatoid arthritis. They came back negative. I went back to my primary doctor. She retested my TSH. It came back “borderline” and I was told to retest in three months.
Right around this time, I weaned my daughter completely. Every doctor I had seen suggested that nursing hormones were the source of my problem. But when I stopped nursing, everything snowballed and I could barely get out of bed. Unfortunately, my doctor was out of the office for the month and I had to ride it out alone.
In January, my TSH remained “borderline” but continued to climb. My thyroid antibodies were tested for the first time, and came back in range at <20. She recommended retesting in three months. I asked to see an endocrinologist. I was referred to the same doctor who had treated me three years before.
The endocrinologist listened to me for 45 minutes, and said that I reminded him of a Hashimoto’s patient he had diagnosed several years ago. He decided to run an ultrasound and found a nodule. A week later, it was biopsied and I was diagnosed with Hashimoto’s.
I thank the stars every day that he listened to me and ordered more tests. Had it not been for that ultrasound, I would still be undiagnosed today. My TSH was always in range. My body was not producing large numbers of thyroid antibodies. Without an abnormal TSH and positive antibodies, a Hashimoto’s diagnosis is nearly impossible by current standards. But that doesn’t mean that I wasn’t suffering.
When it came to treatment options, my endocrinologist fell short. I requested Armour Thyroid. He advised against it, but wrote the prescription. I asked what I could to do stop the progression of the disease, and was told there was nothing I could do. Unsatisfied with the lack of treatment options, I decided that night to start the Autoimmune Protocol (AIP) diet.
Six weeks later, I saw dramatic changes in my energy and pain and my TSH had come down, but I still had lingering symptoms. I requested a full thyroid panel, and my doctor became visibly frustrated. “Those tests aren’t necessary, we know you have Hashimoto’s. Your problems must be from something else. Your thyroid is treated, and I only do thyroid.”
I left his office deflated and angry. I wrote about that here. I used a lot of profanity.
I went back to my primary doctor, who agreed to send me back to the rheumatologist. She also agreed to send me to a neurologist, since many of my remaining symptoms were markers for multiple sclerosis. The tests came back negative.
“You've reached the end of Western medicine,” she said. “I'm not sure what else we can do.”
Ten years of unexplained illness. One year of aggressively pursuing a diagnosis. I had reached the end of Western medicine, but I wasn’t better.
I started seeing a functional medicine doctor who helped me refine my diet and find the right balance of supplements. It’s been slower than I would like, but I am finally healing. I can play with my children, I can work, I can participate in my own life. It’s a balancing act, and I still have a long way to go. But I’m well enough to tell my story.
Western medicine failed to diagnose my thyroid disorder for more than a decade, and I am not alone. Millions of thyroid patients go years without a diagnosis. Millions more struggle every day with an undiagnosed thyroid disease and may never know the cause of their mystery illness.
We know the isolation, the questioning of yourself, the strain that untreated illness brings to a family. We know what it’s like to tell a doctor about your suffering, beg them for help, only to be told that you are fine and they can’t help you.
We are told to accept lingering symptoms as a part of life, because if our TSH is normal, we are fine.
We are not fine.
Somewhere along the line, misdiagnosis and poor treatment have become an accepted part of thyroid illness. With every dismissal, refusal to treat, or failure to provide options in treatment, we lose weeks, months, or years of our lives. Many of us are too tired to fight, and our stories remain untold because there is nobody to listen.
It’s time to tell our stories.
In honor of Thyroid Awareness Month, I have launched Thyroid Voice Project – a forum for thyroid patients to share their experiences and help raise awareness about the epidemic of undiagnosed and under-treated thyroid disorders.
I invite you to join us by sharing something from your battle with thyroid illness. It can be a few words, a photo, a video – tell your story in a way that works for you. You can submit your storythrough our website, or email firstname.lastname@example.org.
Sharing your story can be cathartic. Reading stories from others reminds us that we are not fighting alone. I hope that Thyroid Voice Project provides a feeling of connection and source of healing to anyone suffering with thyroid disease.
I wish you much health, and look forward to sharing stories with you.