Nurse shares her journey with acromegaly

Growing up, Kristin Freeman, of Gibraltar, MI, considered several career options. She ultimately answered her calling, which was to take care of people, and became a nurse. Little did she know that her nursing background would not only help other people but would ultimately help herself.

Coping with symptoms for years before diagnosis

Kristin has acromegaly, a rare hormonal disorder that develops when the pituitary gland produces too much growth hormone, causing the body's bones and tissues to grow in abnormal ways. Her symptoms began more than a decade before her diagnosis. She experienced headaches for many years, mostly short episodes following late nights or times of stress. But in 2016 a headache started that was much worse than the previous headaches.

“As a nurse, certain phrases are triggers for action. ‘The worst headache of your life’ is one of those phrases. And that’s what she had. “This headache was severe. I was nauseous and dizzy with blurred vision.” After bouts of vomiting, Kristin wound up at her local hospital ER.

In the ER, Kristin received medications to reduce her symptoms, but initial testing was inconclusive. She was told to return if the headaches got worse and referred to a neurologist. “A few weeks later my headache was back and was worse than ever,” Kristin recalls. “I was unable to function.” The nausea and vomiting also returned, so Kristin headed back to the ER again. This time, she underwent an MRI. “That’s when I was told I had a pituitary tumor.”

Strange symptoms brought on by pituitary tumor

There were other additional symptoms that Kristin experienced, little things that she had previously overlooked. She felt more tired, but as a nurse working the midnight shift she thought that was pretty normal. “And I was sweating a lot and would keep deodorant in odd places so I could reapply it frequently,” she adds. Her wedding ring, as well as her new shoes, no longer fit. “I also had this new habit of forgetting the names of items or people. Popsicles were frozen lollipops, people I had known forever were just blank spaces in my brain.” As troubling as the new symptoms were, they all were easily explainable. “But the one thing I couldn’t overlook were the headaches.”

Kristin tried 14 different medications for the headaches, but most did not work. It was taking a toll, where she could not enjoy time with her family, or leave her house without having extreme symptoms. After a repeat MRI, she learned that her tumor had grown.

Finally, a diagnosis

Due the growing size of her pituitary adenoma, a noncancerous tumor Kristin underwent surgery to have it removed. After surgery, Kristin says every part of her life was devoted to healing as quickly as possible. She learned that early walking was the key to reducing complications after surgery, so she walked every hour, as long as she wasn’t too dizzy. Her recovery went well and she returned to work after five weeks, although she still had bouts of dizziness and fatigue.

After surgery, Kristin received information regarding her tumor and her symptoms. “When they called with the biopsy results, I was honestly relieved. I was diagnosed with acromegaly and all my symptoms were finally making sense,” she says. “The shoe and ring size increase, and even the sweating are common symptoms of acromegaly. Luckily, my headaches went back to being a few times a month instead of an everyday thing. After surgery I was told they got the whole tumor, but one year later my IGF-1 (tumor marker) was back out of range. The tumor was smaller but had returned.”

Kristin tried several medications to shrink the tumor, but developed side effects and decided she did not want to continue them.

New hope with Henry Ford Endocrinology and Neurosurgery team

After participating in the Pituitary Support Group at Henry Ford Health, Kristin learned about skull base surgical advances at Henry Ford with specialized surgeons, including Karam Asmaro, M.D., neurosurgeon at Henry Ford Health. She also sees Henry Ford endocrinologists Nadia Khoury, M.D. and Sleman Khoury, M.D.

“I find them to be very caring physicians. They also are very knowledgeable about acromegaly, which is awesome,” she says. “My new team developed a plan to help take me off this medication and keep me off it.” She is currently medication-free and working with the Henry Ford experts to monitor her tumor.

As Dr. Asmaro explains, Kristin had initially undergone a traditional transphenoidal surgery, where doctors go through the nose to remove the tumor. “We now know that traditional surgery can leave tumor cells behind, leaving patients in active disease with acromegaly,” he says.

Recent advances in expanded endoscopic surgery have made it possible to remove the tumor while accessing areas which were previously deemed inoperable. “This has been a game changer because the tumor cells live in those areas for the majority of patients,” Dr. Asmaro points out. This new surgical technique is limited to a few centers in the country. “We’re proud to be the center in Michigan to offer this revolutionary surgery to get more people in remission (acromegaly free) and hopefully live their life without further medications,” he adds.

Kristin is hopeful about the surgery and expects to undergo the new procedure in 2024. She has used this journey with acromegaly to advocate for getting the best treatment for herself and others, starting a support group on Facebook for patients with acromegaly.

“I want to make it easier for people suffering from this type of tumor,” she says. “Living in chronic pain is hard. We’re all hurting somewhere and we’re tougher than we look. We are ACROSTRONG.”

For further information on acromegaly visit the Pituitary Disorders Program at Henry Ford Health.