Calcium’s usually mentioned in relation to teeth or hair but its production actually affects the entire body; helping to clot blood and ensure nerves and muscles, as well as eyes, kidneys, bones and heart, are functioning correctly. For this reason it’s essential the body maintains a healthy level - although this isn’t always possible.

Hypoparathyroidism - or Hypopara for short, is a rare endocrine (hormonal) condition in which insufficient levels of parathyroid hormone (PTH) are produced by the glands found in the neck.

This in turn leads to low levels of calcium in the blood, which can have a serious effect on someone’s health if untreated.

[Read more: What is Vasculitis? The signs and symptoms to look out for]

What is it?

“It’s a rare, life threatening condition - the body needs calcium to survive,” explains Liz Glenister, the founder of Hypopara UK. “We describe it like diabetes with calcium instead of insulin. We have similar life threatening hypos and the crashes but have no replacement hormone or home blood tester to help us manage our levels.”

Glenister set up Hypopara Awareness Day in the UK a decade ago, but as it became apparent they were too small to be of interest to researchers or investors, she joined forces with the USA and Nordic organisations and set up World Hypopara Awareness Day in 2010.

“June 1 was agreed upon to coincide with the annual Hypopara conference held in the USA. Now, when we shout, we are starting to be heard!”

What are the most common causes of Hypopara?

The condition might be due to a genetic, congenital or autoimmune disorder that affects the parathyroid glands in your neck (four tiny yellow glands); or occur as a result of neck surgery where the glands have been removed or damaged.

The role of these glands is to regulate and adjust calcium levels so if there’s too little the glands increase the production of PTH into the blood, and if there’s too much, decreases it. If someone has Hypopara, the body isn’t able to adjust the levels as needed and the person will require external influences to aid stability.

What are the symptoms of Hypoparathyroidism?

There are no symptoms of Hypoparathyroidism (low parathyroid hormone levels) but there are symptoms of Hypocalcaemia (low calcium levels) and Hypercalcaemia (high calcium levels), which can range from mild through to severe.

Low calcium

Early warning signs include: tingling or numbness in the hands and/or feet and/or the face especially around the mouth; tiredness; headache; diarrheal twitching or trembling muscles.

If left untreated, symptoms can include: increased brain fog, feeling very shaky inside; carpopedal spasm (painful muscle spasms or cramps of the hands and feet); high anxiety.

High calcium

Early warning signs include: extreme tiredness and lethargy; feeling weak; constipation mild confusion

If left untreated, symptoms can include: feeling and being sick; drowsiness; passing large amounts of urine; feeling very thirsty; dehydration; muscle spasms, tremors and irregular heartbeat.

[Read more: Never heard of Hughes Syndrome? You could still be at risk]

How is Hypopara diagnosed?

A doctor will normally do a calcium blood test. A bone and kidney scan should be requested and a 24 hour urine test carried out according to advice offered at www.hypopara.org.uk. The doctor might also carry out physical tests such as tapping in front of your ear when your mouth’s slightly open [called Chvostek's sign]; checking for cataracts and examining muscle reflexes.

What treatment is there?

Permanent Hypopara requires lifelong treatment with daily medication such as a vitamin D analogue and a calcium supplement. You may also need to take magnesium and vitamin D3 supplements to help keep your calcium levels stable. If it’s only temporary following surgery, you’ll be able to come off your prescribed medication once the glands are functioning properly again. 

For more information visit: www.hypopara-awarenessday.com

Do you or someone you know suffer from hypopara? Tell us in the Comments box below.