Hypoparathyroidism: symptoms, causes, treatment and living with it

The NHS says hypoparathyroidism can be treated by taking calcium supplements, to raise the level of calcium in your body, and vitamin D supplements, which help your body make better use of calcium. You will usually need to take them for the rest of your life. You may be offered supplements even if you have no symptoms but tests show damage to your parathyroid glands, to lower the risk of serious problems.

You will need regular blood tests to check calcium levels. If these show that supplements are not working well, the NHS says you may need extra medicines.

Hypopara UK, the patient organisation, adds that the aim of treatment is to abolish symptoms rather than to restore a normal blood calcium, keeping calcium high enough to avoid the symptoms of low calcium but low enough to avoid problems with the kidneys. It explains that treatment must be individually tailored because everyone responds differently, and that most people need a vitamin D analogue (such as alfacalcidol) plus a calcium supplement, with magnesium and vitamin D3 sometimes added.

It also says it is better to get more calcium from the diet than from supplements, and that splitting the dose across the day can avoid a peak and a fall by bedtime. Do not change doses yourself. Dose changes should be guided by blood tests and your endocrinology team.

The NHS lists these symptoms:

• a tingling or burning sensation in the fingers, toes and face

• muscle pain, stiffness and spasms

• tummy pain

• brittle nails, dry hair and dry skin

• cataracts (cloudy patches at the front of the eyes)

• less commonly, and more seriously, confusion, an irregular heartbeat and seizures (fits)

Hypopara UK explains that the symptoms are caused by low calcium (hypocalcaemia) rather than by low parathyroid hormone itself, and that they develop along a spectrum from none to severe. Many people have no symptoms once calcium and vitamin D levels are properly adjusted, although levels can fluctuate, so blood tests are still important.

It describes mild symptoms as tingling in the hands, fingers and around the mouth, and twitching muscles. Early signs of tetany may include tingling or numbness in the hands, feet or face, irritability, brain fog, tiredness, headache, diarrhoea and twitching muscles. If untreated, more severe symptoms can include painful muscle spasms, high anxiety, confusion, severe muscle cramps and, rarely, seizures.

Hypopara UK also notes that treatment can overshoot. Early warning signs of high calcium include extreme tiredness, weakness, not wanting to eat, constipation, poor concentration and mild confusion, and if untreated can progress to sickness, drowsiness, thirst, passing large amounts of urine, dehydration and confusion. Tell your team if you notice these.

The parathyroid glands help control the level of calcium in the body. The NHS says calcium is a mineral the body needs to keep bones, muscles and nerves working properly.

The NHS says most of the time the cause is damage to the parathyroid glands during surgery to the neck or head. It names surgery for an underactive or overactive thyroid and surgery for head or neck cancer. Other causes include conditions where the immune system damages healthy tissue, such as Addison's disease, and some rare genetic conditions.

Hypopara UK divides causes into post-surgical hypoparathyroidism, which it calls the most common form in adulthood, and rarer idiopathic forms that may be congenital, inherited or autoimmune. It says post-surgical hypoparathyroidism may be temporary, with the glands often recovering within 6 months to a year, or permanent. Radiation or drug treatment, parathyroid cancer and HIV are further rarer causes, and "hungry bone syndrome" can temporarily follow surgery for an overactive parathyroid gland.

The NHS says that if hypoparathyroidism is possible you may have a number of blood tests to measure calcium and to rule out other causes of your symptoms. A low calcium level can be a sign of hypoparathyroidism. If you are having neck or head surgery, you may have these tests soon after surgery to check for damage to the parathyroid glands.

Hypopara UK says it is usually diagnosed with a simple calcium blood test: in hypoparathyroidism blood calcium is low, phosphate is high and parathyroid hormone is low. Further tests may include thyroid, kidney and liver function, bone profile and vitamin D levels. Doctors may also look for signs of low calcium on examination and may arrange genetic testing if an inherited cause is suspected.

The NHS says you may be advised to make some changes to your diet. These include eating foods high in calcium, such as dairy products, green leafy vegetables, soy and tofu, and avoiding or cutting down on red meat and starchy foods such as pasta and white bread.

Hypopara UK recommends getting more of your calcium from diet than from supplements where possible, and notes that magnesium and vitamin D3 levels also affect how calcium is tolerated. Ask your endocrinologist or dietitian for personal advice, because diet needs to fit with your medicines and blood results.

The NHS says to call 999 if you think someone is having a seizure and it is the first time it has happened, or it lasts longer than is usual for them or longer than 5 minutes if you do not know how long their seizures usually last. Do not drive yourself to A&E.

The NHS says that if your calcium level becomes too low it can cause seizures and serious heart problems, which need hospital treatment with calcium given into a vein until the level returns to normal.

If you recently had neck or head surgery, the NHS says you should have been told who to contact in case of complications, and to try that first before talking to a GP. Otherwise see a GP if you think you might have hypoparathyroidism.

Hypopara UK says calcium is closely linked to oestrogen, so calcium levels can fall around periods for some women, and may fluctuate during the perimenopause as periods become irregular. It suggests monitoring calcium and talking to your doctor about adjusting treatment, with regular blood tests while changes are made. Do not adjust medicines without advice from your clinical team.

The two names are easy to confuse. The NHS says hyperparathyroidism is a condition where there is too much calcium in the body and that it is more common than hypoparathyroidism.

On the NHS, care is usually led by an endocrinologist after diagnosis, with regular blood tests arranged through your GP or hospital clinic. After neck surgery, the surgical team should explain who to contact. Some people see an endocrinologist privately for faster review or a second opinion. Your calcium results and medicines should be shared with your GP in either case. Parathyroid UK and Hypopara UK offer patient support.