Living with hypoparathyroidism

Impact of hypoparathyroidism on quality of life, physical functioning and psychological wellbeing

The burden of hypoparathyroidism (also known as hypopara) negatively impacts health-related quality of life, physical functioning, and psychological well-being, regardless of serum calcium levels. ^{2, 17, 18}

Impact on quality of life

In a survey of 42 people living with hypopara, the respondents reported the following impacts on their daily life, mental health, activity and social life & relationships. ¹⁷

Daily Life ¹⁷

79%

were not able to do as many things around the home

43%

said that hypopara interferes with their ability to work

67%

were unable to do as much as they used to/want to

Mental Health ¹⁷

81%

felt anxious or had anxiety

64%

felt frustrated

62%

felt depressed or sad

Activity ¹⁷

76%

were not able to exercise in the same way

52%

are less active than they used to be/want to be

50%

were not as mobile (including ability to walk)

Social Life & Relationships ¹⁷

79%

were less able to engage in social activities

57%

were limited in the types of social activities they could do

43%

said hypopara affected their relationships with family

The reality of living with hypoparathyroidism

Living with hypoparathyroidism is about far more than managing symptoms or attending appointments.

For many people, the condition affects how they work, socialise, travel, exercise and navigate everyday life. These are the challenges that often go unseen by others, yet can have a significant impact on wellbeing, independence and quality of life.

In 2026, we asked 50 people living with hypoparathyroidism across the UK to share their experiences. Their responses offer a powerful insight into the realities of living with this rare condition and why greater awareness and understanding are still needed.

What often doesn’t get captured is how the condition affects everything that happens between appointments.

Missed opportunities

Mental health impact

Lost confidence

Days spent recovering

Reduced social life

Hypopara’s impact on daily life

90%

said hypopara has changed their ability to lead the life they want to.

“It has really changed my life. I cannot do the same things as I once did physically. I get tired much more easily. My anxiety has been the worst part… I grieve the old me.”

Female, aged 44

“[I’m] half the person I was. My health now consumes my every day. I don’t get to live life to the full anymore.”

Female, aged 64

The ripple effect: Hypopara impacts more than someone’s health

Among respondents, hypopara was reported to affect many aspects of day-to-day life, including:

Social participation

79%

stated the condition impacts the number of social events they can attend.

70%

said it affects hobbies and leisure activities.

Work and independence

83%

said hypopara negatively impacts their work or education.

79%

revealed it affects their ability to do physical activities, e.g., lifting heavy items and exercising.

Relationships and life experience

66%

acknowledged it impacts their ability to travel or go on holiday.

53%

said it affects relationships with partners or loved ones.

“Hypopara can come knocking at any time and disrupt even the simplest tasks.”

Female, aged 64

“I try not to show my family so carry on doing what I can, but cooking family meals is tough.”

Female, aged 68

Managing a chronic condition

Living with hypoparathyroidism often means managing ongoing healthcare needs alongside everyday life.

34%

reported experiencing an emergency hospital admission related to hypopara in the previous year.

50%

attended specialist appointments at least every few months, including 12% who went monthly or weekly.

“Miserable and afraid because you never know when your life will be at risk again when calcium crashes.”

Female, aged 57

“It makes me feel like I am not present in my own body. It feels like I’m not in control of my own muscles.”

Female, aged 36

“My bones are extremely brittle. I’ve broken about four bones this year. I’ve had to have surgery on my hip as a 29-year-old.”

Male, aged 30

Behind every statistic is a unique personal experience

The following stories showcase the realities of living with hypoparathyroidism, from the challenges people face to the ways they adapt, advocate and navigate life with the condition.

From Social Butterfly to Living on a Knife’s Edge – Gillian’s Story

I’ve had problems with my thyroid since I was young. I had my first thyroid operation when I was just 13, and then another in my twenties after another goitre on my thyroid began pressing on my windpipe. Years later, I needed a third operation following a diagnosis of thyroid cancer on the remaining part of my thyroid gland.

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By Gillian, aged 62, living in Newcastle

Find out more about living with hypopara

The insights used to inform this video have been taken from the qualitative responses gathered from a patient survey conducted in partnership with Ascendis Pharma UK and Parathyroid UK in 2024. ¹⁹ Data was reported on an aggregate level and data was provided anonymously.

Meet Laura who is living with hypoparathyroidism. In the video above, she shares her experiences of symptoms, diagnosis, treatment, and the impact hypopara has had on her life, along with her personal perspectives.

Meet Sabine and Fabienne who are both living with hypoparathyroidism. In the video above, they share their experiences of symptoms, diagnosis, treatment, and the impact hypopara has had on their lives, along with their personal perspectives.

References