It's all too easy to take our physical well-being for granted, especially for those fortunate enough to consistently feel well.
For Jean Rose-DeRenzy, an active woman from Canton, Ill., who spent decades as a neurology nurse, children's librarian, gardener and horse-riding enthusiast, life suddenly took a sudden turn for the worse not long after a horse-buying trip to Oklahoma in early 2016.
"Two weeks after I came home, I was so weak and just couldn't do anything," she said. "Within a few months, I was forced to retire after 35 years of nursing because I simply couldn't walk enough to perform my job."
Jean grew increasingly frustrated because every provider she saw locally could not pinpoint the problem. Her joint pain and swelling were assumed – mistakenly – as signs of Rheumatoid Arthritis, and she was treated accordingly. Her elevated calcium levels were treated with "watchful waiting." Other symptoms, such as "brain fog," increasing bone pain, intense itching of her trunk and rash outbreaks, left Jean and her husband, Dan, extremely frustrated.
Ultimately, Jean's culprit was finally identified in the fall of 2017 – 18 months after the onset of her debilitating symptoms. The problem was hyperparathyroidism, in which an overgrowth of one or more parathyroid glands triggers secretion of excess parathyroid hormone. This leads to a surplus of calcium in the bloodstream and many unwanted physical and mental symptoms.
Why parathyroid glands are so important
Although the parathyroid glands (each of us has four) and the thyroid gland (which regulates metabolism) have nothing to do with each other, they are often confused because their names sound similar and they are both located in the neck.
"Our parathyroid glands are about the size of a grain of rice," said Dr. Rebecca Sippel, the UW Health Endocrine Surgery division chief. "They are incredibly important because they regulate the amount of calcium in our blood and bones. Since having the right amount of calcium at any given time is vital for proper function of multiple systems in the body, an overactive parathyroid gland, which produces excess parathyroid hormone, can be devastating to patients both physically and mentally."
Symptoms of hyperparathyroidism – many of which Jean experienced – include:
Fragile bones that fracture easily
Weakness and low stamina
Bone, muscle and joint pain
Forgetfulness and "brain fog"
Moreover, even a slightly elevated level of calcium can be a sign of trouble.
"Historically, some providers downplayed mild calcium elevation as a concern," Dr. Sippel said. "Yet even a mild elevation in calcium levels can lead to fairly significant symptoms for some patients."
Surgery is the only cure for hyperparathyroidism
Surgery to remove an overactive parathyroid – typically done on an outpatient basis – is the only way to treat the condition. Once it is performed, Dr. Sippel said most patients experience improvement or resolution of at least 60 to 70 percent of their symptoms.
"Many patients, including Jean, describe it as life-changing," Dr. Sippel said. "Their mood, energy level and ability to concentrate typically improve significantly, and they just feel so much better."
For Jean, the journey to a better life included a few detours. It was not until her third parathyroid surgery – one in Illinois and two at UW Health – that the overactive parathyroid was found.
"My bad parathyroid was hard to locate because it was hidden within my thyroid gland," Jean said. "Even after Dr. Sippel could not find it the first time she operated, she refused to give up and ultimately removed it the second time after a biopsy and additional imaging revealed its hidden location."
Highly impressed with the UW Health experience
Shortly after her successful surgery in December 2018, Jean wrote a letter to UW Health praising Dr. Sippel and her team and expressing gratitude for the excellent care, communication and family-focused approach they exhibit.
"People often only take the time to express themselves when they have a complaint," Jean said. "I wanted everyone to know how much not only I, but also my husband appreciated the many ways UW Health made this experience so positive."
Dr. Sippel's team, which attracts hyperparathyroidism patients from near and far, prides itself on making the process work smoothly.
The team's clinical program coordinator, Ann Arnold, RN-BC, MSN, takes her time with each patient; nobody feels rushed.
"I help our patients navigate our system, gather necessary medical records and images, coordinate studies and appointments, educate them on their disease and next steps, and answer all questions and concerns," she said.
"For patients like Jean, who seek out our program from long distances, we aim to get this legwork done in advance. If possible, we offer these patients the opportunity to get their consult and surgery done in two days with just one trip to Madison. In the end, we want our patients to have a remarkable experience that allows them to focus on healing and enjoying a better life."
How to reach the UW Health Endocrine Surgery Clinic
Dr. Sippel encourages anyone searching for answers after experiencing the symptoms mentioned above to learn more about endocrine surgery or call the UW Health Endocrine Surgery Clinic at (608) 242-2888.
"Hyperparathyroidism is often underdiagnosed and untreated," she said. "We want to help people get better, because too many patients suffer needlessly, or they just assume – mistakenly – that their symptoms have more to do with aging."
Accordingly, Dr. Sippel and her team do a lot of physician-to-physician communication on the topic, helping increase awareness of hyperparathyroidism among both community providers and patients.
"We just want more people to have a much higher quality of life – even if someone else has told them they have to just deal with their symptoms," she said.