:: Hypoparathyroidism UK ::

Treatment

Hypoparathyroidism requires lifelong treatment with oral medication

Vitamin D, in varying forms
Calcium supplements for occasional fine tuning
Magnesium which works with calcium

Alfacalcidol and Rocaltrol are the brand names of different types of vitamin D analogues which provide calcitriol ( the active vitamin D , or hormone). These are not vitamin D3 supplements that you can buy over the counter but potent steroids that will be prescribed by your doctor and will require careful monitoring. Doses will be up to up to 2 - 3mcg dail so that little calcium is needed.)

Calcium supplements are used to back up the vitamin D and should be kept to a maximum of 2000mg. It is better to get as much calcium from your diet than from supplements. Calcium levels need to be checked regularly by blood tests.

The aim of treatment is to ensure that calcium levels are kept high enough to avoid symptoms of hypocacaemia ( low calcium) but low enough to avoid causing problems with the kidneys.

A long term maintenance dose of 2.20mmol/L to 2.50 mmol/L is recommended.

Withdrawal of medication

Many cases of post surgical Hypoparathyroidism are temporary. If PTH levels are above 18 ng/l medication may be gradually withdrawn.

Replacement parathyroid hormone

PTH 1-34 (Forteo) and PTH 1-84 ( Preotect) do exist but are not yet licensed for use in the treatment of Hypoparathyroidism. Global trials, including the UK, are currently taking place and we await the results with interest.

Intravenous calcium

If you experience acute and severe symptoms of low calcium , you will need urgent treatment with intravenous calcium (the calcium is given directly into a vein via a drip). You may also be given magnesium if those levels are also low.

Diet

Diet is very important in the treatment of Hypoparathyroidism and regular meals will help to keep levels stable. A diet rich in calcium and vitamin D is also recommended.

Auto - transplantation

A parathyroid gland may be transplanted at the time of surgery ( eg a thyroidectomy) into the arm or neck where it is hoped that it will continue to release parathyroid hormone.

Can post surgical hypoparathyroidism be prevented?

During thyroid or neck surgery, care must be taken by the surgeon to identify and locate the parathyroid glands and to avoid damage to them, if possible. A surgeon with experience in this type of operation should be sought. Anyone undergoing thyroid or neck surgery, radiotherapy to the neck or the chest, or chemotherapy (drug treatment for cancer) should be monitored for symptoms and signs of low calcium levels.

Genetic Testing

Genetic conditions can't be prevented but genetic testing is available in centres around the UK. Genetic counselling aims to help parents understand how the condition may affect their family and enable them to make informed decisions.

Self Help

As this is a rare condition and it's effects are so individual and unpredictable, it is important that we learn to recognise our own unique set of symptoms and monitor the ways in which they relate to medication and other influences in order to maintain stable levels. Taking control of your condition is an important step in the process. Hopefully, sharing our experiences and working together with our doctors will help to move us towards an improved quality of life.

Please go to the Maintenance Guide in the Members' Area to find out more about managing your condition.