ROCHESTER, Minn. — When Elyn Simmons began to develop symptoms, she and her new husband Guy didn’t think anything of it. Maybe it was just part of getting older.
“The first symptom was the high blood pressure,” Elyn said.
She can’t remember exactly what her blood pressure reading was. Maybe around 130 over 90. The American Heart Association
notes that people should shoot for blood pressure readings of 120 over 80 or lower. So Elyn’s wasn’t too high. And she was young (28 years old at the time) and living a super healthy lifestyle that included regular exercise, healthy eating and supportive relationships.
Elyn and Guy, who met each other when they were counselors at a camp in northern Minnesota, couldn’t wait to start a family. But when they started trying, it wasn’t working. They weren’t getting pregnant. Still, they weren’t too concerned, because a lot of couples have difficulty conceiving, right?
After a while, they went to see an infertility specialist at Mayo Clinic in Rochester, Minnesota. Then more symptoms appeared — clues that something was going wrong. Elyn started to put on weight, even though she continued her healthy living habits. Her energy levels tanked, she developed excess body hair and she had excess testosterone.
“I also started to get bruises really randomly and I didn’t know why,” Elyn said. “And they tested me for different blood illnesses and my blood work would come back fine other than that testosterone.”
She also started to get easily frustrated and irritable. And the hair on her head began to fall out.
“I remember having to sweep the bathroom a lot,” Guy said. “And I should have realized that it wasn’t normal.”
But it’s hard to notice changes when they happen over time. At this point her doctors knew there was an issue and her symptoms pointed to a common condition called poly cystic ovary syndrome (PCOS). The Centers for Disease Control and Prevention
notes that women who get PCOS have elevated levels of androgen, which is a male sex hormone both men and women have in different amounts. The extra hormones can disrupt your menstrual cycle and how your body regulates insulin, increasing your risk of diabetes. Treatment includes living a healthy lifestyle (which Elyn was doing already) and sometimes medication.
Even with treatment, Elyn’s symptoms kept getting worse. She couldn’t sleep, experienced migraines and kept gaining weight. Her doctors ordered more tests and found another clue. She had elevated levels of another hormone called dehydroepiandrosterone sulfate (DHEAS), which is made in the adrenal glands. This was a big clue that something else was happening. Their infertility specialist then sent them to their colleague, Dr. Alice Chang, a Mayo Clinic endocrinologist, who says she knew what Elyn had the minute she walked into her office.
“Her appearance was that of someone with a condition called Cushing’s syndrome,” Chang said.
Cushing’s syndrome is caused when high levels of corticosteroids exist in your body over time, Chang explained. At normal levels, steroids are a good thing. They’re hormones that help your body respond to stress. Steroids also help regulate blood pressure and reduce inflammation, which is why your health care provider might prescribe them for you if you have asthma, arthritis or other issues.
Even though steroids are made in the adrenal glands, Elyn’s adrenal glands were not what was causing the problem. Tests showed that Elyn had a noncancerous tumor on another gland — the pituitary gland in her head. The tumor was prompting the pituitary to produce a substance that was stimulating Elyn’s adrenal glands to pump out excess steroids.
“The pituitary gland, we call the master gland, because it regulates all of the other endocrine glands in the system,” Chang said. “It’s right behind the eyes, so it’s very accessible through the nose for surgery.”
A neurosurgery team removed Elyn’s tumor, but because it was close to sensitive structures, they couldn’t remove all of it. So Elyn’s option for a cure was to then have her adrenal glands surgically removed, which would mean steroid replacement for the rest of her life. Recovery takes many months, because your body has to taper off of the excess steroids to reach normal replacement levels. And that’s not easy. But, after time, Elyn began to feel better.
And after several years of sickness and also worry that they’d never have a family, Elyn and Guy got pregnant: Jack is 3 years old and Matilda is 1.
This mystery took a huge team of heath care providers, including infertility specialists, endocrinologists, neurosurgeons, endocrine surgeons to sleuth out what was wrong with Elyn. In addition to finally getting a diagnosis and proper treatment, Guy says he also learned something else.
“I think the life lesson we did learn, is that if something doesn’t feel right it’s not right,” Guy said.
To listen to a podcast about Elyn and Guy’s medical mystery journey and see pictures of their family, check out the link below.
podcasts. For comments or other podcast episode ideas, email Viv Williams at
Or on Twitter/Instagram/FB @vivwilliamstv.