This disease can occur in any adult. It is more common in women though and the peak incidence is in their 50s-70s. Because the general symptoms could be described as a part of many illnesses it takes on average 3 years after the first presentation with these symptoms to get a diagnosis and treatment. Onset is insidious so sufferers, and those they see most days often, don't notice the changes it causes at first. Friends and relatives you see once or twice a year often do notice over a few visits and then the symptoms mimic so many other diseases that even after seeing a doctor it can take a long time to make a diagnosis.
The extent of symptoms experienced is not always linked to high how your calcium or PTH levels are. Most people have a diagnosis made based on having a high blood calcium (adjusted for blood albumin levels) and a high PTH. There is good evidence that 'mild biochemical' disease has as good if not better surgical outcomes in terms of symptom resolution. The diagnosis can be better described as being the ratio of PTH to calcium and if that ratio is appropriate. A high blood calcium should send signals to parathyroid cells telling them to secrete less PTH. S a high blood calcium should have a low or low normal PTH level. If someone has a high calcium and normal higher end PTH (this is known as normoPTH hypercalcacemia). Similarly it is possible to have a high PTH and a higher end of normal range calcium (normocalcaemic hyperparathyroidism). To make this diagnosis it is important to consult an experienced endocrine surgeon who has said that they will see and consider these conditions. Not all healthcare professionals in endocrine surgery or endocrinology will accept this is clinically relevant.
Word of warning though. The diagnosis needs to be ascertained over a lot more testing time and other things excluded (particularly normoPTH hypercalcaemia). Even once the diagnosis is made localisation often fails and so surgery has a much higher risk of failure causing persistent disease.
This disease causes a benign (not cancer) enlargement of a parathyroid gland known as an adenoma. Once a biochemical diagnosis is confirmed with blood and urine tests, localising the adenoma with an ultrasound and a Sestamibi scan can direct surgery so that it can be performed using a minimally invasive or focussed approach.
Rarer forms of hyperparathyroidism are caused by renal failure in patients that are dialysis dependent known as secondary hyperparathyroidism. Those that have had renal failure reversed by a kidney transplant can develop tertiary hyperparathyroidism. Secondary and tertiary hyperparathyroidism are a multi-gland disease. A rare genetic disease called MEN 1 (and sometimes MEN 2) get a multi-gland disease too. These are treated by finding all 4 glands and removing the most diseased looking 3 and leaving a normal size remnant of the fourth. Surgery for these often recurs rather than is cured. The surgeon aims to maximise the time to recurrence (aim 10-15 years) and make subsequent surgery less complex and safer. We rarely remove all 4 glands as it can cause a painful, weak bone complaint called 'adynamic bone disease'.
Underactive parathyroid disease is caused by complications of previous neck surgery such as post thyroidectomy or very very rare genetic complaints. Vitamin D and calcium replacement are the treatment. Surgery rarely helps.
Parathyroid localisation by CT Sestamibibi above and a 3D reconstruction below.
This operation is used for successfully localised primary hyperparathyroidism where we know where the abnormal gland is. It is the operation we usually offer in over 95% of cases. It is a 2-3cm incision in the neck over where the gland is. It is done under a general anaesthetic and nerve block to smooth recovery. It carried out as a day case. Frozen section and intra-operative PTH measurement can have a role in a few cases, but don't reduce the risk of failure by any more than an additional 1%. The chance of surgery being successful in first time surgery is around 96-97% without using them.
No operation is without some risks and these are discussed here.
Post operation advice for parathyroid surgery can be found here