It’s a common conversation: A female patient presents to her male doctor with unexplained weight gain. “I’m not overeating,” she says. “I try to exercise, but it’s getting harder and harder to do that.”
The physician is dubious. “You just need to be more active,” he responds. “You need to stop eating so much,” he adds. “Here’s a diet plan. You just need to stick to it.”What if, instead of responding so skeptically, the physician had offered a midnight saliva cortisol test (or, better, several done on different nights)? The results might have been surprising: validation of the patient’s perspective, a correct diagnosis, and proper treatment for a disease that is ultimately fatal if left untreated.
I was that patient. My first hospitalization, in 2004, was for unexplained episodic tachycardia. “It’s dysautonomia,” I was told. “By the way, you also have exercise intolerance.” And: “Watch your blood sugar; it’s creeping up.”
I experienced eighteen years of misdiagnosis and fat-shaming by multiple internists, neurologists, cardiologists, and endocrinologists. Fifteen years in, a CT scan for a kidney surgery I needed turned up an adenoma on my left adrenal gland. The urologist ordered blood tests, which showed mildly elevated levels of norepinephrine.
After doing some research, I convinced myself and my family doctor that I had a pheochromocytoma, an adrenal tumor. The symptoms fit. Heartbreak followed when my adenoma proved to be lipid-rich, meaning it was unlikely to be a pheochromocytoma. An endocrine surgeon gave me that bad news, but also suggested I have a repeat test for the hormones renin and aldosterone.
As a result, I was diagnosed with primary aldosteronism (PA). Adrenal venous sampling showed my aldosterone issue to be in my normal-looking right adrenal gland. Surgery was not recommended because of the adenoma on the left gland.
I was crushed again, but more determined than ever to figure out what was wrong, as I was becoming more and more ill. I was too sick to just have PA. Many more hours of research later, I learned that many people with PA also have Cushing’s syndrome. I asked my family doctor for those midnight saliva tests. Thankfully, he was willing to order them.
They came back positive. Two very long years and many more tests later, I finally had surgery this past January to remove the adenoma on my left adrenal gland. My recovery is going to be long—and likely incomplete, because I was misdiagnosed for so long.
What if, twenty years ago, I had been offered those midnight saliva cortisol tests?
Sara Ann Conkling