Fatigue, brain fog, irritability and an overwhelming desire to sleep were constant feelings for Eve Van Buren. Eve had just begun a new job at UNC and was running a successful side business, in addition to being a mom of two children. If that was not enough, she found herself in the middle of a difficult divorce. With all this, Eve initially chalked up her exhaustion to a combination of stress and the aging process, but after a diagnosis of kidney stones, realized that there might be something else contributing to her feelings of fatigue and fog.
“I just thought this was what getting older was going to be like,” says Eve. “I was putting off getting a physical because I don’t like getting blood drawn. However, because of the kidney stone, I decided it was time. I was going through a hard time and was just dealing with everything, not realizing that there was a medical reason behind her symptoms.”
Eve did not realize she was experiencing the warning signs of a disease that was slowly creeping up on her. In the spring of 2018, she made an appointment with her primary care physician, and her blood work came back showing unusually elevated calcium levels. The doctor, not wanting to jump to conclusions had Eve return for another round of testing. Her calcium levels again came back elevated, and she was referred to Dr. Morgan Simonds Jones, an endocrinologist with UNC Hospitals Diabetes and Endocrinology Clinic at Meadowmont.
After additional tests, Eve was diagnosed with primary hyperparathyroidism, a disease in which one or more of her parathyroid glands are hyperactive, meaning they were working in overdrive. The parathyroid glands are four tiny glands, each the size of a lentil, located in the back of the neck. They produce a hormone called parathyroid hormone (PTH) which regulates the blood calcium levels. This is done in three ways: by breaking down bone where most of the body’s calcium is stored, by increasing the body’s ability to absorb calcium from food and by increasing the kidney’s ability to hold on to calcium that would normally be lost in the urine.
The parathyroid glands are constantly at work to keep the blood calcium levels in the body at a controlled range. Proper calcium balance is crucial to the normal functioning of the heart, nervous system, kidneys, and bones. When a person is suffering from primary hyperparathyroidism, it means that one or more of the glands are haywire. The malfunctioning gland(s) thinks the body needs more calcium, so it begins “stealing” it from the body.
“Most people have never heard of these glands, I had never heard of them before this experience,” says Eve. “You automatically think it’s connected to the thyroid, but that’s just not the case, it’s totally different from your thyroid. These glands are the size of a grain of rice. The incredibly important things they do in our bodies is mind-blowing. When they are out of whack, it deteriorates your quality of life. Moreover, the longer they go undetected, the worse it becomes. I sometimes wonder how bad it would have gotten before I went to the doctor.”
Abnormally high blood calcium levels can damage or weaken every organ of the body over time. When the parathyroid glands steal the calcium from the bones, it can weaken the bones, causing osteoporosis. Calcium is usually flushed from the kidneys in urine, so any excessive build-up can cause kidney stones as well as kidney damage. The high calcium in the blood can also contribute to blood vessel damage.
The only known cure for primary hyperparathyroidism is the surgical removal of the hyperactive parathyroid gland. In the hands of an experienced endocrine surgeon, success rates range between 95-98%. Once doctors confirmed her diagnosis, Eve was referred to Dr. Lawrence Kim, Surgical Oncologist, and Endocrine Surgical Specialist at UNC.
“The symptoms of hyperparathyroidism are often vague and include fatigue, minor mental changes, or mild depression,” says Dr. Kim. “Many patients don’t even realize they have a problem, but just assume they’re getting old. So even patients who think they are fine sometimes feel better afterward. One patient described her experience to me after the surgery. She said, ‘It was as if a gray veil was lifted. Colors were brighter, smells and tastes were more intense.’ “
When Dr. Kim sees a patient with hyperparathyroidism, his first step is to confirm the diagnosis. This is done through blood and urine tests. The next step is to localize the abnormal parathyroid with imaging. Most people have four parathyroid glands, and under normal conditions, they’re too small to see with any x-ray tests (ultrasound, CT, and so on). Usually, only one gland is bad, and it will appear enlarged which is why it will appear on an ultrasound. “In the old days,” says Dr. Kim, “we would go in and look at all of the parathyroid glands. Now, we use the imaging to guide us so that we don’t have to do as much dissecting in the neck. It minimizes the pain and impact on the patient.”
“I found Dr. Kim to be very patient and kind, taking time to explain everything to me,” says Eve “During the ultrasound appointment with Dr. Kim, the one thing you want to find out is, did he find the specific gland that is causing all the issues? He was honest with me and told me not really. All I could think (during the appointment) was ‘oh crap.’ He assured me not to worry because during the surgery they continue to run blood tests to check the parathyroid hormones levels. He explained all that to me and how the surgery would go. I found him to be very sweet and lovely.”
Eve’s surgery was scheduled six weeks after her initial appointment with Dr. Kim, and she had complete confidence in the team of doctors and nurses throughout the process as she was prepped and administered her IV.
“The operation is done through a small incision, usually less than an inch for routine cases,” says Dr. Kim. “Her operation took about a half hour. We then have to wait in the operating room while the lab values are run (another 20-30 minutes). We measure the parathyroid hormone (PTH) levels during surgery. The half-life of PTH is about 3.5 minutes, which means it is cleared very rapidly from the blood. The idea is, that if we remove the overactive parathyroid gland, then the PTH should fall quickly. If it doesn’t fall enough, that’s a signal that there might be an additional bad parathyroid gland for us to find. In her case, the levels fell quickly as we would expect.”
The effects of the surgery vary by patient, many individuals feeling an immediate relief from symptoms. For Eve it took about five days after recovering from the surgery to start to feel better. Three weeks after the procedure she felt like her regular self again. “The overriding thought in my mind as soon as I would get out of bed in the morning was, ‘when can I get back under the covers,’” remembers Eve. “Even after a long night sleep, I never felt like I was rested. After the surgery that overwhelming exhaustion was completely gone.”
The benefit of surgery and curing primary hyperparathyroidism is potentially fixing the issues or symptoms of the disease. Patients can have improved bone density, possibly even regaining bone strength leading to a decrease in the risk of bone fracture. They have an improved quality of life and lower risk of kidney stones.
“When I saw all these results on my chart I was flabbergasted. My PTH level was 139 before the surgery, and it went down to 14. Dr. Kim took very good care of me. He is awesome, and I would recommend him to anyone. Everybody at UNC is incredibly gracious and kind and understanding. I am going through all of this alone. I have no spouse, no adult family nearby to lean on, so it really makes a big difference when the people caring for you are so compassionate and kind.”