he study findings startled researchers in terms of the magnitude of reported symptoms. “What we’re hearing from patients is that, in general, having this condition had a pretty significant impact on their quality of life,” Clarke says. “Basically, there was a lot more symptomatology than we have classically been taught that hypoparathyrodism can cause. In a global sense, that was the biggest surprise to me.” Symptoms clinicians would expect include what low calcium would cause, such as muscle cramps, tingling, and parasthesias. But what was reported went well beyond these classic symptoms, including what Clarke says his patients referred to as “brain fog,” which impacted their ability to focus, remember, learn and retain information, and hold a job.
Importantly, these unexpected but very commonly reported symptoms persist despite treatment. The current therapy (used for the last 50 years) involves replacing the calcium and vitamin D that
low/absent PTH causes. “Theoretically, at least, that should take care of their symptoms,” Clarke says. “But despite getting the best treatment that we have, these patients are telling us they are not very functional in their day-to-day life. It impacted relationships with family; it impacted intimacy with partners; it impacted their ability to exercise and any number of normal functions. Symptoms that we thought would get better with treatment did not.”
“The more accurate portrayal of the problem here is that because hypoparathyroidism is a rare disease, most clinicians, including many endocrinologists, have no real direct experience caring for these patients. Although it is perceived as relatively easy to treat because it involves just oral supplements of calcium and active vitamin D, I think what physicians fail to understand is that this is not so easy,” Vokes says. Because the patient must constantly take the supplements to avoid the very unpleasant consequences of low calcium — what patients call “crashing” — this dependence can interfere with their lives. “And, I think even more than that, we’re asking these patients to stay at a calcium level that is at or just below the lower limit of normal. I don’t think any of us would be comfortable at that level. We’re asking them to be in a non~physiologic range,”
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