Taking action

Get your questions answered

It is important to play an active role and partner with your healthcare team in finding the best path forward. In dealing with your condition, you should tell your doctors how you are feeling.

WHAT TO ASK YOUR DOCTOR ABOUT YOUR DIAGNOSIS


  • What is the cause of my low blood calcium (hypocalcaemia)?
  • What tests will you do to confirm that I have hypoparathyroidism?
  • Are all of my parathyroid glands missing (if caused by surgery)?
  • Is the cause of my hypoparathyroidism genetic?
      –   If so, should my family be tested?

WHAT TO ASK YOUR DOCTOR ABOUT MANAGING YOUR CONDITION


  • What is the role of parathyroid hormone (PTH)?
  • What is the importance of calcium?
  • What is the importance of vitamin D, and what is activated vitamin D?
  • What blood calcium level will you target for me?
  • How often will you check my blood calcium level?
  • Is it necessary to monitor other levels in my blood such as phosphate, magnesium and kidney function (creatinine)?
  • Should I modify my diet?
  • What is the goal of treatment?
      –   What are the long-term goals for me?
  • What types of symptoms should I expect and what causes them?
  • If I experience symptoms, what should I do?
  • What are the signs that my symptoms require emergency attention?
  • If I have a severe reaction and need emergency care, what should I tell the emergency staff?

WHAT TO ASK YOUR DOCTOR ABOUT YOUR DIAGNOSIS

  • What is the cause of my low blood calcium (hypocalcemia)?
  • What tests will you do to confirm that I have hypoparathyroidism?
  • Are all of my parathyroid glands missing? (if caused by surgery)
  • Is the cause of my hypoparathyroidism genetic?
    • If so, should my family be tested?
  • Do you have other patients with hypoparathyroidism?

WHAT TO ASK YOUR DOCTOR ABOUT MANAGING YOUR CONDITION

  • What blood calcium level will you target for me?
  • How often will you check my blood calcium level?
  • What is the role of parathyroid hormone (PTH)?
  • What is the goal of treatment?
    • What are the long-term goals for me?
  • Why do I get neuromuscular symptoms? [for example, twitching, cramping, or abnormal excitability of nerves and muscles causing leg or arm spasms (tetany)]
  • What other types of symptoms should I watch for?
  • If I experience symptoms, what should I do to get my levels back under control? What are the signs that my symptoms require emergency attention?
  • If I have a severe reaction and need emergency care, what should I tell the emergency staff?
  • What is the importance of vitamin D, and what is activated vitamin D?
  • Is it necessary to monitor my phosphate and vitamin D levels?
  • Should I modify my diet?

Support groups


Hypopara UK is the only patient organisation for adults & children living with a parathyroid condition in the UK and Ireland. Volunteers raise awareness about these rare conditions, support new research, fundraise, and offer friendly support and reliable information.

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Nordic hypoPARA Organisation is a patient driven non-profit alliance for patients with hypoparathyroidism, their relatives, and interested healthcare professionals. It aims to offer information and advice, increase contact between patients, facilitate cooperation with their healthcare professionals, and promote further research into the disease.

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The Danish Association for Hypoparathyroidism is run by people with hypoparathyroidism, with help and advice from interested professionals. It provides advice and information, hoping to increase knowledge about the disease and to fight for better medical help. The organization aims to bring together people with this rare disease.

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Svensk förening för Hypoparatyreoidosm is an official registered patient driven non-profit organisation, serving patients with hypoparathyroidism, their family and friends and interested healthcare professionals in Sweden. It aims to connect patients and offer them information and advice. Facilitates cooperation with healthcare professionals to promote further research into the disease.

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A patients’ organisation working to improve the lives of people affected by hypoparathyroidism in France.

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