Driven to Disruption…The first endocrinologist literally threw a sample packet of Synthroid 25 mcg across the examination table at me. There was no way, she said, that my symptoms could all be real at a TSH of only 5. “Come back in 8 weeks,” she said. In 8 weeks, my TSH was 7.
Two years and five doctors later I met Dr. Hanson, an endocrinologist and thyroid cancer survivor. It took 3 months to get an appointment, but within an hour of walking through the exam room door, she had listened to me for forty minutes, interrupted me only briefly to ask a few specific questions, lowered the dose of my original thyroid medication, added a second thyroid medication, and a week later I was thinking clearly. I was at the beginning of getting my life back.
I have Hashimoto’s thyroiditis. It’s a common autoimmune disease. I was 38 when diagnosed. I was also an ultrarunner with dozens of 100+ mile runs under my belt, a Ph.D., a small business owner, and a prolific writer. I relied on my brain and body in ways that the average person didn’t even approach.
For months prior to my visit with the first endocrinologist, I couldn’t function cognitively or physically. I was only able to stay awake 8 hours a day. I felt like my legs belonged to an elephant when I ran, and I wanted to lie down at the side of the road and take a nap. I couldn’t read a paragraph because by the time I got to the last sentence, I couldn’t remember what the first sentence said.
As the owner of a personal training business, I had clients with chronic disease. They called me because no one was helping them with quality of life. I learned a lot about the gaps in care for people who were treated by doctors. I was finding out firsthand.
After my experience, I decided I wanted to have more medical knowledge so I could work more effectively to help people like my clients improve their quality of life, filling in the gaps between treatment and being well.
I attended nursing school, then worked in critical care and oncology infusion. Oncology became my passion. Perhaps it was my sister’s breast cancer diagnosis the same time I started my first nursing job, and my dad’s subsequent leukemia diagnosis, but I listened to patients while I gave them chemotherapy infusions. I attended support groups in the community. I wanted to know why patients’ needs weren’t being met, and why I kept hearing the same complaints all the time from cancer patients who sounded remarkably similar to the chronic disease clients I had worked with years earlier.
I soon learned why. I had ideas about how to bridge the gaps, but in the corporate health care setting nobody cared. Having a cancer center just like the hospital across town was more important than what it actually offered inside. Innovation was not part of the plan.
I decided to figure out a way to do it myself. I began working with private clients and teaching an exercise class in my community for cancer survivors. Now I’m developing a service online to help them.
The standard advice given by doctors: exercise, watch what you eat, don’t smoke, manage your stress, were hollow. A schedule of follow-up scans didn’t provide direction in how to get from a body weakened by chemotherapy, radiation, and surgeries to a healthy and happy quality of life. They needed the skills and the information, and some direction and guidance, sometimes even hand holding in how to use it, set realistic goals, and make progress.
Doctors aren’t coaches, nor are they experts in nutrition, exercise, lifestyle and behavior change. The problem was, people still believed in doctors being omniscient god-like creatures.
When it comes to behavior modification, nutrition and exercise, doctors (and nurses) are some of the worst offenders. Highly stressed all the time, they neglect their own physical and mental health. The best thing they can do is to realize they don’t know something, admit it, and refer patients to the resources to fill those gaps.
Many of the issues faced by cancer survivors don’t come up until after treatment is completed. Leaving the security of being followed closely by their oncologist and treatment team can be terrifying. Some of the long lasting effects of treatment, such as scarring from radiation, or neuropathy, don’t even reach their peak until after treatment is over. Fatigue hangs on, along with a weakened immune system. Anemia takes months to resolve even at best.
Long-lasting effects have long been underreported, denied or dismissed without a solution, such as lingering neuropathy, brain fog, and other symptoms that a growing body of evidence now supports as real. Like the time the endocrinologist implied I was making things up, this happens routinely to patients. Their complaints are dismissed, they are told there’s no evidence for what they were saying, albeit anecdotally and repetitively by multiple patients.
The only way to make change is at a grassroots level, intervening in the real situations on a day to day basis that make a difference in quality of life, in between the doctor appointments.
It takes a decade or more, for changes in practice to happen in medicine. The research has to happen, there has to be a body of evidence, the information has to be disseminated, then changes in practice must be implemented. Action doesn’t happen through layers of bureaucracy. Meanwhile, people are suffering.
Alene Nitzky, Ph.D, RN, OCN is an oncology nurse, health coach and cancer exercise trainer in Fort Collins, Colorado, U.S. She is the CEO and Founder of Sunspirit Wellness Services and the creator of Cancer Harbors, an online service designed to meet a range of needs in post-cancer treatment recovery. An avid blogger, she posts to Journey to Badwater, Fighting Dinosaurs, Ultrahypo, and Bitchen Swill. She has been running since 1984 and has been running ultramarathons since 1991. Follow her on Twitter @AleneGoneBad.