How to Get Diagnosed When Your Doctor Says Nothing's Wrong
When traditional doctors failed to get Tammy Worth's symptoms diagnosed, she turned to a naturopath.
Everyone told me exhaustion was normal for a working mom with two young boys. "Join the club," said my doctors, friends and family. "We're all tired." But seven years ago, I realized tired was no longer just a feeling. It was my perpetual state of being. I could sleep for 10 or 11 hours and wake up feeling drained. One afternoon as I sat on the floor watching TV and folding laundry, I leaned over to relax. Twenty minutes later I awoke with my upper body contorted in the laundry basket where I had unwittingly fallen asleep.
At the same time, I started having panic attacks. These gradually morphed into a constant simmering anxiety that took its toll on my stomach. I experienced my first bouts of acid reflux and my appetite vanished. Even though I have an insatiable sweet tooth, I'd only have a bite or two of even the most delicious chocolate desserts. And I was always cold, huddled under blankets in the summer while my family reveled in the air conditioning. I knew I needed to get properly diagnosed.
My doctor ordered blood work, which showed everything as normal—except my thyroid panel was slightly high. She thought I might have an overactive thyroid (hyperthyroidism), which occurs when your thyroid gland produces too much thyroxine, a hormone that regulates your metabolism. But the endocrinologist she referred me to disagreed. After a five-minute exam, he decided I was healthy—except for an anxiety disorder—and I ended up on Lexapro.
The medication eliminated my panic attacks within days, but the other symptoms remained. And for nearly three years blood work taken during my annual physicals came back exactly the same, so I did nothing. I was going through a divorce, had a full plate with work and plenty of other concerns to occupy my full attention. My two boys were only 6 and 3, so they didn't notice how exhausted I was. I became masterly at plastering a smile on my face while helping with the garden at school only to nearly pass out at 9 p.m. each night and wake up at 8 a.m.—just in time to get my younger son fed, dressed and off to school. But my health problems did affect my job as a freelance writer. I lost track of assignments and wasn't able to get as much work done because of my inability to concentrate and the daily hour-long naps I needed to get through the night with my kids. As my reliability faded, so did the number of jobs I was given. Afraid I'd lose all my work, I decided to get a third opinion.
Having a fairly holistic approach to health—I do yoga and Pilates for back pain and juice for energy—I decided to seek out a naturopathic physician. Given my symptoms, she ordered blood work that the other doctors hadn't: a thyroid peroxidase antibody test. It diagnoses autoimmune diseases related to your thyroid like Hashimoto's thyroiditis—which I finally found out I had.
The most common autoimmune disease out there, Hashimoto's affects up to 46 out of every 1,000 people in the U.S. It causes a person's immune system to mistakenly attack the thyroid, slowly damaging it, which reduces thyroxine output and makes it underactive—the opposite of what my first doctor suspected was happening. Although fatigue and muscle weakness are symptoms of both conditions, sensitivity to cold and depression are associated with an underactive thyroid (hypothyroidism).
"The tricky thing about Hashimoto's is that people can feel bad without even testing positive for hypothyroidism," says R. Mack Harrell, MD, immediate past president of the American Association of Clinical Endocrinologists (AACE). "It's like an iceberg: Thyroid symptoms are what you see from the ship, and Hashimoto's is what causes the damage under the water's surface."
As in my case, the disease is commonly misdiagnosed for conditions like anxiety or depression. "Individuals also tend to acclimate to the symptoms and compensate for them," says Jacqueline Jonklaas, MD, associate professor of endocrinology and metabolism at Georgetown University. "If someone is too exhausted to do her usual exercise routine, she may adjust by choosing a less demanding one." And other signs (like hair loss and weight gain, for instance) are easily written off as midlife changes.
Realizing that people under age 70 with slightly low thyroid levels could benefit from medication, the AACE adjusted their treatment range in 2012 to include more people on the upper fringe of the scale. That's good news, given that hypothyroidism can cause problems ranging from heart disease and nerve damage to infertility. But it is easily treated with daily medication.
Within a couple of weeks of starting a pill called Synthroid, a synthetic form of thyroxine, I noticed a tremendous difference in my energy level. I could go to the grocery store and not forget half of what I needed. Traveling for work on a plane didn't mean I'd need a Xanax to get through the flight. And, best of all, even after long, active days, I could stay up until the wee hours of the night cranking out an assignment. Despite my misdiagnosis, I still have respect for traditional medicine. But these days I listen closely to my body, and if my doctor chooses not to, I find one who will.
How to Get Diagnosed When Your Doctor Says Nothing's WrongFollow up. Your TSH levels can vary as much as 50% depending upon the time of day you're being examined. If a blood test is borderline, discuss it with your physician and ask when you should come back to be retested.
Define different. Because everyone has her own idea of what normal feels like, focus on what has changed for you when you speak with your MD. For example, tell your doctor if you used to need only seven hours of sleep but now find you're still tired after nine hours of rest.
Advocate for yourself. If your physician isn't taking action, always remember that there are other doctors who will. Don't be afraid to get a second, or even third, opinion if you truly believe something is wrong. That extra consultation could make all the difference.