Natalie Cusano, MD, MS 

In this final episode, Dr. Cusano asks Dr. Dolores Shoback how she tailors communication for patients who are not meeting treatment goals, experiencing complications, or struggling with the burden of long-term disease management.

Communication, Multidisciplinary Collaboration, and Future Outlook in Hypoparathyroidism

Dr. Shoback emphasizes the importance of involving family members early, since patients are often trying to manage the disease alone. She highlights community support groups—including the Hypoparathyroidism Association, which holds meetings for patients and caregivers—as a valuable resource for both information and peer support. Dr. Cusano notes that two of her own patients found each other through a support group and have benefited greatly. When significant depression, anxiety, or other mental health complications are present, referral to a mental health provider—whether for medication, counseling, or family therapy—is essential. She underscores that there is no single path for these patients, and that intensive, individualized care with frequent appointments and maximum support is often necessary.

On adherence, Dr. Shoback advocates for engaging patients in actively tracking their own labs and medications, using computers or phones as tools. Positive feedback, clear rescue dosing instructions, and empowering patients to feel "in the driver's seat" of their own management are central strategies. She frames this as applying the same principles used in other chronic disease management—tailored to the individual.

Dr. Lubitz adds that consistent messaging with primary care providers is critical, particularly to prevent misinterpretation of intentionally low-normal calcium values as a laboratory emergency requiring dose escalation.

Dr. Cusano then opens the floor to all panelists on the future of hypoparathyroidism management. Dr. Khosravi anticipates refinement of guidelines as real-world and randomized data mature, better surgical identification techniques such as autofluorescence, potential cell-based therapies, point-of-care calcium monitoring, and precision medicine approaches like encaleret for ADH1. Dr. Ferenczi urges greater referral of patients with genetic forms who remain undiagnosed or undertreated, and emphasizes that emerging therapies can meaningfully improve quality of life for those patients if they reach appropriate specialists.

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In this episode, Dr. Cusano asks Dr. Andrea Ferenczi to walk through preoperative risk identification, counseling, and postoperative management for patients undergoing thyroid or parathyroid surgery at risk for developing hypoparathyroidism.

Surgical Considerations and Perioperative Management of Hypoparathyroidism

Dr. Ferenczi explains that American Thyroid Association statements and the surgical literature have converged on a consistent set of risk factors: total thyroidectomy, autoimmune thyroid disease, central neck dissection, substernal or retrosternal goiters, surgeon inexperience, and malabsorptive conditions. Additional independent risk factors include preoperative hypocalcemia or vitamin D deficiency, inability to visualize or preserve parathyroids intraoperatively, reoperation, large goiters, female sex, Graves disease, and Hashimoto's thyroiditis. She recommends obtaining baseline serum calcium, PTH, and 25-hydroxyvitamin D before any planned bilateral operation. Correcting vitamin D deficiency preoperatively is a modifiable risk factor that should always be addressed. If baseline calcium is already low-normal or below normal, supplementation can be started preoperatively.

She stresses the importance of distinguishing transient hypoparathyroidism—common and usually resolving within weeks to months—from permanent disease, defined as persisting beyond 12 months. Patients should be counseled candidly that permanent disease means lifelong medication and monitoring. In high-risk patients, surgeon volume matters, and parathyroid autotransplantation should be considered, as it is associated with more transient but less permanent hypoparathyroidism.

Postoperatively, early PTH measurement is the key triage tool: a PTH above 10 pg/mL at 12 to 24 hours post-thyroidectomy makes permanent hypoparathyroidism very unlikely, while a PTH below 6 pg/mL at four to six hours is a strong predictor of permanent disease. She recommends checking serum calcium within 24 hours, teaching patients to recognize symptoms of hypocalcemia—perioral and fingertip tingling, muscle cramps—before discharge, and providing explicit rescue dosing instructions. Most patients should be reassured that early hypocalcemia is often transient, and a definitive diagnosis of permanent hypoparathyroidism should not be declared until 12 months have elapsed, as late recovery can occur. For those who do progress to permanent disease, the postoperative period is the ideal time to establish the long-term monitoring relationship.

In the next episode, "Communication Strategies, Multidisciplinary Collaboration, and Future Outlook in Hypoparathyroidism," the panel discusses communication approaches for patients struggling with disease burden, the role of multidisciplinary care and patient support groups, and shares their outlook on the evolving future of hypoparathyroidism management.

In this episode, Dr. Cusano asks Dr. Andrea Ferenczi to share strategies for discussing the multisystem nature of hypoparathyroidism and the importance of long-term monitoring with patients.

Communicating the Multisystem Nature of Hypoparathyroidism to Patients

Dr. Ferenczi identifies the central challenge: patients whose calcium levels are normal on labs often feel well and do not understand why they need ongoing blood draws, urine collections, imaging, and specialist visits indefinitely. She emphasizes the need to make silent, cumulative complications tangible without inducing panic or fatalism.

A key strategy is to reframe the disease from "low calcium" to "a missing hormone with body-wide responsibilities." This shifts patients away from anchoring on a single number, and reframes monitoring as watching several organ systems simultaneously—kidneys, bones, neuromuscular function, eyes, and mood—rather than rechecking one value. She recommends making the kidneys the primary motivating anchor: explaining that the treatment itself, when calcium runs too high, can silently damage the kidneys over decades, and that the low-normal calcium target and 24-hour urine test exist specifically to protect kidney function. This reframes monitoring not as an inconvenience but as a way to avoid dialysis—a concrete, understandable goal.

Dr. Ferenczi also recommends explicitly naming and validating cognitive and quality-of-life symptoms—brain fog, fatigue, and mood changes—that patients are often told are imagined or attributed to other causes. Normalizing these as recognized features of the disease, not character flaws, builds trust and makes patients more likely to report symptom changes that should prompt treatment adjustments.

Setting expectations about variability is equally important: pregnancy, aging, illness, and drug interactions will affect calcium balance and necessitate dose changes. Providing a written sick-day plan—when to take extra calcium, when to seek urgent care—gives patients concrete agency. She advocates for teach-back methods and shared monitoring schedules to actively involve patients as partners in their care. Dr. Cusano agrees that a proactive sick-day plan is among the most practical tools clinicians can provide.

In the next episode, "Surgical Considerations and Perioperative Management of Hypoparathyroidism," Dr. Ferenczi outlines preoperative risk stratification, preoperative optimization strategies, postoperative PTH-based triage, and patient counseling for those undergoing thyroid or parathyroid surgery who are at risk for developing hypoparathyroidism.

In this episode, Dr. Cusano asks Dr. Khosravi to identify the most significant unmet needs remaining in the current treatment landscape for hypoparathyroidism.

Unmet Needs in the Hypoparathyroidism Treatment Landscape

Dr. Khosravi provides a wide-ranging assessment. On the conventional therapy side, key limitations include failure to fully normalize mineral homeostasis in a meaningful proportion of patients—particularly an inability to adequately address hypercalciuria and lower phosphorus—persistence of low bone turnover, irreversibility of some complications once established, and ongoing calcium fluctuations that cause harm. Quality of life remains unaddressed for many patients. Surveys across countries indicate that up to 80% of patients report an empathy gap on the part of their providers in understanding the true burden of disease—including the daily pill burden of conventional therapy.

Disparities and inconsistencies in complication data between surgical and non-surgical hypoparathyroidism also represent a significant unmet need; better long-term evidence is needed to clarify these differences.

On the PTH replacement side, palopegteriparatide represents a major advance, but still requires a daily injection. Patients would clearly prefer a non-injectable or less-frequent option. Fixed daily dosing also cannot replicate the minute-to-minute calcium homeostasis provided by endogenous PTH. Special populations—pregnant and lactating women and children—remain largely without robust evidence-based guidance, and existing recommendations for these groups are largely extrapolated from other populations.

Long-term skeletal data represent perhaps the most important unanswered question: whether PTH replacement reduces fracture risk compared to conventional therapy remains unknown. Dr. Khosravi also looks forward to advances in surgical parathyroid identification techniques such as autofluorescence, potential cell-based therapies, point-of-care calcium monitoring, precision therapies such as encaleret for ADH1, and the maturation of real-world registry data.

In the next episode, "Communicating the Multisystem Nature of Hypoparathyroidism to Patients," Dr. Ferenczi shares practical strategies for helping patients understand why lifelong multisystem monitoring is necessary even when they feel well, and explains how to engage patients as active partners in managing their chronic disease.

Natalie Cusano, MD, MS

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