If you live with hypoparathyroidism, this dedicated virtual town has been designed especially for you. It offers a variety of resources, from 24-hour urine collection protocole, to video of Hypoparathyroidism Days organised by our OSCAR Rare Disease Reference Centre at Nantes University Hospital.
Click on the different locations within the town to explore available content!
A specialist, such as an endocrinologist or nephrologist, works in collaboration with your general practitioner (GP) to manage your hypoparathyroidism. If your condition remains stable and causes few symptoms, your GP can provide regular follow-up and consult specialist centres when necessary.
Hypoparathyroidism is a rare disease which could be managed through reference centres, especially in severe cases, with a significantly alteration in quality of life. Our centre in Nantes, France, is one of OSCAR Rare Disease Network reference centres in France, which take care of patients with hypoparathyroidism.
In addition to medical teams, patients associations offer valuable support.
Guidelines help healthcare professionals in managing hypoparathyroidism.
The latest european guidelines where published in 2025
Explore patient-focused videos about hypoparathyroidism on our YouTube channel @centrecalipso.
Most videos are in French and require english subtitles.
This section provides documents to assist patients in performing and interpreting biological tests, required in their follow-up, including blood tests and urine analyses.
In hypoparathyroidism, the objective is to maintain calcium in the low-normal range to reduce urinary calcium loss and minimise risks of kidney stones, nephrocalcinosis and chronic kidney disease. Target blood calcium levels usually should range between 2.0 and 2.15 mmol/L, sometimes higher depending on symptom severity. Blood phosphate, magnesium, vitamin D status and urine calcium are expected to remain within normal ranges. Urine calcium excretion should stay below 0.1 mmol/kg/day based on a 24-hour urine collection, but this aim is hard to obtain for a lot of patients, due to the chronic calcium loss.
Biological regular follow-up at a minimum of every six months is recommended (calcium, phosphate, magnesium). Kidney function requires monitoring (blood creatinine), along with risk assessment for kidney stones through 24-hour urine collections and imaging (ultrasound or non contrast computed tomography (CT)). Ophtalmology assessments are advised due to cataract risk. Dental check-ups are important and should be performed annually. Brain calcifications (Fahr syndrome) may occur but are rarely symptomatic; routine brain imaging is not typically recommended.
Your diet forms a crucial part of managing hypoparathyroidism.
Maintaining regular, stable calcium intake through diary products or other sources (e.g. calcium-rich mineral waters or almonds – unless limited by hyperoxaluria or stones) is essential. Adjust calcium intake according to your daily activities, such as before intense exercise.
A low-salt diet helps to reduce calcium loss in urine and lowers the risk of kidney stone.
This section outlines key dietary principles to help minimise risks of hypocalcaemia, kidney stones, and hyperphosphataemia.
Your medical team may assess dietary adequacy through your 24-hour urine collection (sodium and protein intake). Performing these correctly is critical for a correct interpretation (see “Tests & Monitoring”). Dietary advice should be tailored to your condition’s severity, coexisting illnesses (e.g. hypertension, diabetes, history of bariatric surgery), age, and hormonal status (pregnancy, menopause).
Please consult your medical team to personnalise dietary recommendations.
Medication is a vital component of hypoparathyroidism management, alongside dietary management.
Missing doses or insufficient treatment may lead to lower calcium levels. Conversely, excessive doses increase the risk of hypercalcaemia and kidney stones.
Finding the right treatment balance is challenging and requires ongoing adjustments based on biological monitoring and evaluation of symptoms. Your healthcare team will regularly review test results to modify treatments as needed.
What to do in an emergency?
Severe symptoms of hypoparathyroidism include tetany (painful muscle cramp or stiffness affecting part or all of the body) and laryngeal spasm (changes in voice, difficulty breathing). Palpitations or other heart-related signs, such as chest pain or trouble breathing, may indicate a heart rhythm disorder and require urgent attention.
Some patients never experience these symptoms, while others might have them regularly despite treatment, then .
Any new symptom should be taken seriously. Hypoparathyroidism should only be considered as the cause after ruling out other conditions.
Your can request an emergency card in your langage here.
This card helps speed up your care and details urgent treatment protocols.
If you experience worrying symptoms (tetany, cardiac symptoms, laryngeal spasm) or unusual signs that do not improve quickly after calcium supplementation, call emergency services immediatly or contact your designated care centre if possible.
Patients association offer support and documents.
Several countries have patients association and it is not possible to list everyone of them.
Please find some association below and if you know other association, feel free to contact us !
French association: Hypoparathyroidisme France
United Kingdom: Hypopara UK
Germany: Netzwerk Hypopara
Norway: Hypopara Norge
United States: HypoPARAthyroidism Association
Many research teams work to improve understanding of hypoparathyroidism. Better knowledge of the condition leads to improved care and patient information. New treatments are currently under study, which may one day greatly enhance the quality of life for patients with severe forms. This site does not aim to list all ongoing research. However, significant scientific events maybe shared on our LinkedIn feed.
How to assert your rights?
Hypoparathyroidism can cause a wide range of symptoms that may affect daily life and the ability to work. Depending on the country, different forms of medical, social, and occupational support may be available to help with care, treatment costs, sick leave, disability recognition, or workplace adjustments. Patients are encouraged to speak with their healthcare team and local social services to identify the support options available in their country.
Physical activity is recommended for people with hypoparathyroidism but can be challenging when fatigue or chronic pain occurs.
Like dietary management, Adapted Physical Activity (APA) plays a crucial role in managing hypoparathyroidism, which is often complicated by fatigue and chronic pain. APA helps strengthen muscles, improve mobility, and reduce tension, which can ease symptoms such as cramps and muscle cramps and help prevent complications.
A personalised APA programme, supervised by professionals such as physiotherapists, adapted physical activity instructors, or specialised sports educators, offers the best chance to enhance quality of life.
Therapeutic education aims to improve quality of life.
These workshops take place either in person or online, usually with 4 to 8 patients, a trained healthcare professional familiar with hypoparathyroidism, and patient experts. Workshops cover various topics including treatment management, symptom control, dietary advice, and how to discuss the condition with family or employers. They also provide an opportunity to meet others facing similar challenges.
Contact your medical team to check if a program is available in your country !
How to support your mental well-being?
“Brain fog” (difficulties concentrating, trouble multitasking, memory problems) is a common syptom in hypoparathyroidism? Additionally, low parathyroid hormone levels can affect mood and mental health.
Many patients develop hypoparathyroidism following thyroid surgery, which can also cause thyroid imbalances. Combined with the daily challenges of a rare, invisible, and chronic condition, these factors may contribute to anxiety or depressive symptoms.
Consulting a psychologist or your GP for psychological distress is an important part of your care. Addressing common sleep disorders associated with hypoparathyroidism is also advisable.
Travel is not contraindicated for people with hypoparathyroidism, especially when travelling to sunny destination (where vitamin D levels can be benefit).
It is important to prepare for travel abroad by asking yourself.
1- Do I have all my essential medical information with me?
2- Will my diet change during my trip?
3- Have I packed my medications and brought copy of my prescription?
Note: Treatments for hypoparathyroidism (especially active vitamin D derivatives and injectable medications) may not be easily available everywhere. Planning ahead is essential to avoid hypocalcaemia (for example, carry calcium supplements in your luggage).
Medical care often overlooks the impact of hypoparathyroidism on sexuality, affecting both patients and their partners. Symptoms like fatigue, cramps, and tetany can make intimacy challenging.
This section offers a video (in French) to help address these issues. Do not hesitate to discuss your concerns with a healthcare professional or your medical team, especially if this affects your quality of life.
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