Hypoparathyroidism is a rare endocrine disorder due to the absence, or extremely low levels of parathyroid hormone (PTH). Persons lacking PTH have problems maintaining homeostatic levels of calcium, magnesium, vitamin D, and phosphate. hypocalcemia and hyperphosphatemia are the most commonly observed symptoms, which in turn can have numerous short and long term effects.
Those short and long term effects can lead to persons feeling burdened by the disease. To what extent they are burdened has only recently been documented however.
Hadker et al  recently published their study that analyzed the results of a web-based questionnaire answered by 374 adults with hypoparathyroidism. A sample of the results of that survey are shown below but readers are encouraged to obtain the complete study at http://aace.metapress.com/content/k5mn712445413k46/
Time since diagnosed
3.5% 0.5 – 1 yr
16% 1 – 3 yrs
44% 4 – 10 yrs
15% 11 – 19 yrs
21% > 20 yrs
66.6% Calcium + Vit D
44.1% Vit D capsules /liq
25.1% Calcium alone
22.2% Calcium + Magnesium
19.8% Vit D tablets
08.3% Muscle relaxant
78% Muscle Pain/cramping
67% Joint / bone pain
53% Extremities discomfort
72% Mental lethargy
65% Problem concentrating
62% Memory problems
57% Sleep disturbances
In addition to the plethora of symptoms these patients have to endure, many patients feel the care they have, or are receiving, is inadequate. Below are some of the statements in the questionnaire and the percentage of patients who agreed with it.
Most physicians do not understand hypoparathyroidism
79% Strongly agree
05% Strongly agree
I am concerned with the long-term effects of medications
75% Strongly agree
08% Strongly agree
Hypoparathyroidism harder to control than doctor initially said
63% Strongly agree
15% Strongly agree
The burden of hypoparathyroidism was also felt in terms of the persons being hospitalized (79%), inability to perform household activities (85%), and their employment (20%).
In the conclusion, the authors wrote “the extent of the negative impacts that hypoparathyroidism has on many facets of a typical adult’s health, well-being, and lifestyle, despite the use of the current standard of treatment, is the most striking result of this survey. The constant burden on patients’ overall well-being, coupled with the patients’ perceptions of how poorly their healthcare provider understands their condition, suggests that an ‘empathy gap’ exists.”
These disturbing results can be improved with better disease education and more research into improving how we manage and treat these patients.
Presently, there is no approved treatment for hypoparathyroidism and current management seeks to control symptoms with oral calcium and active vitamin D (calcitriol or alphacalcidol). NPS Pharmaceuticals has filed a BLA for Natpara with the U.S. Food and Drug Admininstration (FDA). A review
of the Natpara BLA is scheduled for September 12, 2014 and a PDUFA Date is scheduled for October 24, 2014.
1. Hadker N, Egan J, Sanders J, Lagast H, Clarke BL. Understanding the burden of illness associated with hypoparathyroidism reported among patients in the paradox study. Endocr Pract 2014;20:671-679.