Recently been diagnosed with hypopara?

Being diagnosed with hypoparathyroidism (hypopara) can be a daunting or upsetting experience. Because it’s so rare, you may not have heard of the condition until you, or someone you know, are diagnosed with it. You may want to to let the news sink in or you may want to talk about it to your family or friends. Whatever you decide, help is at hand. Our support group is always open for you or you can call our helpline. Learning all you can about your condition helps you to feel in control.

If you’ve developed the condition after neck surgery (for the treatment of thyroid cancer for example) then you might still be coming to terms with your cancer diagnosis and treatment, and the diagnosis of a lifelong condition on top of it can be tough to handle.

Some people who’ve lived with a genetic or autoimmune cause of hypopara for many years may feel a sense of relief that their condition has finally been properly diagnosed and that it can now be treated properly.

Everyone’s experience of hypopara is different, and everyone experiences its symptoms differently.

What to expect:

• You should know up front that hypopara is a lifelong condition, and at the moment there is no known cure for it. The aim of the treatment is to regulate your calcium levels so you can manage the symptoms.
• It is not a life-limiting condition (i.e. it won’t affect your life expectancy) and in many cases people maintain a normal life and routine. It can be more debilitating for some people though, and can affect their everyday life and work.
• You will most likely have to take tablets every day for the rest of your life (they will be available on a free prescription) and you will have an endocrinologist for life too.
• Over time you will learn to balance your medication and recognise the symptoms in your body when your calcium levels are too high or too low. This isn’t easy, and unlike diabetes there isn’t a simple home-testing kit you can use to monitor your blood calcium levels.
• Being diagnosed with a rare, hidden condition like hypopara can affect your emotional wellbeing as well as your physical health. It can affect your self-image, and it’s likely that your friends, family and work colleagues won’t ever have heard of hypopara and won’t really understand how it affects you.

What to do next

• Become a member. Membership is free.
  The isolation caused by living with a rare, hidden condition can be tough to cope with on top of the physical symptoms. The chances are that you probably won’t meet a fellow hypopara patient in your everyday life.
  Our community is a welcoming, safe space made up of members who were diagnosed with hypopara just like you have been. We know what might lie ahead and we’re with you every step of the way.
• Ring our patient helpline for some advice and support, or just a sympathetic ear.

  01342 324091

• Make sure your GP is up to speed with your condition. You might want to take some of our leaflets and publications with you. You’ll probably need to have regular blood tests to begin with in order to find the right level of medication to regulate your calcium levels. Don’t feel shy about asking for more tests.

How will it be treated?

• You will be referred to an endocrinologist if you haven’t been assigned one alredy. They are the ones who will ultimately decide which medication you take, and how much. Because hypopara is a lifelong condition, you’ll be a patient of your endocrinologist for life too.
• Everyone’s hypopara is different, and no two treatments are ever the same. It’s likely though that you’ll get a free prescription for a medication called Alfacalcitrol – which is an ‘active’ form of Vitamin D that helps your kidney to , and possibly Magensium. You may also be prescribed calcium supplements. The ultimate aim of your treatment is likely to be that you will help your body to absorb all the calcium it needs from your diet, rather than relying long-term on calcium supplements which can have an adverse effect on your kidneys.

Questions you should ask your endocrinologist

Even within the field of endocrinology (the study of hormones) hypopara is quite rare and some endocrinologists specialise in it. You’ll stay with the endocrinologist for decades to come, so it’s important that you have one you’re comfortable with.

• What’s your experience with treating hypoparathyroidism?
• What do you see as the aim of my treatment? What are the alternatives? (ask 3 questions)
• You’ll get a feel for how patient-centred their care is. Are they working with you and listening to what you want, or just telling you what they think you need.

What are the hopes for future treatment?

As things stand, hypopara is a lifelong and incurable condition. We do have hope though that in the future it will be treated with some form of hormone replacement therapy (HRT) – probably via a skin patch or tablets (hypopara is currently the only parathyroid condition that does not have a HRT treatment).

This would replace the faulty or absent PTH hormone with a version that your body can use to properly regulate your calcium levels.

Latest updates

A clinical trial is underway in the US and we’re waiting to hear about an imminent one in the UK. Become a member and we’ll let you know if there’s an opportunity to join the trial.

Even if HRT treatment is developed and successful, the cost of it may be prohibitive to most of us, and we may face a struggle to get the NHS to pay for it to become available on prescription.