What is Hyperparathyroidism?

Primary Hyperparathyroidism occurs when TOO MUCH parathyroid hormone is released by the parathyroid glands in the neck. This , in turn, releases TOO MUCH calcium into the blood.

A blood test will show hypercalcaemia, a high level of calcium in the blood The normal range is around 2.1 - 2.6 mmol/L

Hypercalcaemia can cause various symptoms - tiredness, thirst, headaches, nausea, vomiting, kidney stones and bone pains. If symptoms are severe, the gland(s) may be removed by surgery.

There are three types of Hyperparathyroidism - primary, secondary and tertiary.

 

Primary Hyperparathyroidism

In Primary Hyperparathyroidism (or PHPT) too much parathyroid hormone is produced by one or more of the parathyroid glands in your neck because they have become enlarged or overactive. This in turn releases too much calcium into the blood and causes high calcium levels (hypercalcaemia).

Causes

  • The most common cause is an enlarged parathyroid gland due to a benign (non - cancerous) tumour or adenoma. This is more common among women, particularly after the menopause.
  • Sometimes all four parathyroid glands may become enlarged - this is called parathyroid hyperplasia. This may occur sporadically (without a family history) or as part of three familial (inherited) syndromes: multiple endocrine neoplasia 1 (MEN 1) and MEN 2A and isolated familial hyperparathyroidism. In MEN 1, the problems in the parathyroids are associated with other tumors in the pituitary and the pancreas. In MEN 2A, the overactivity of the parathyroids is associated with tumors in the adrenal gland or thyroid.
  • Radiotherapy treatment to your head or neck may increase the risk of developing a parathyroid adenoma or carcinoma (cancer). Only in extremely rare cases indeed will the tumour be due to parathyroid cancer. If you  have been diagnosed with Parathyroid cancer please visit Cancer Help UK for further information.

Symptoms

In Primary Hyperparathyroidism you may not have any symptoms at all despite high levels of calcium or you may just feel 'not quite right'. (Sometimes the condition is only discovered by chance in these cases while investigating something else.)  

Alternatively, you may develop moderate symptoms (which doctors sometimes refer to as 'moans, groans, stones and bones') which indicate that your calcium levels are too high and require treatment. And sometimes your parathyroid hormone blood tests may come back as 'normal' but you remain very symptomatic.

Symptoms may also be severe and debilitating. As calcium is found in every cell in the body, high levels of calcium and parathyroid hormone can affect bone, kidneys, muscles, nerves and the gut as well as the emotions.

Early warning signs can include:

  • Feeling thirsty and passing urine a lot
  • Feeling sick and not wanting to eat much
  • Feeling tired and lethargic
  • Feeling weak with muscles that tire quickly
  • Feeling low and depressed
  • Constipation
  • Abdominal pain
  • Loss of concentration and interest in doing things
  • Mild confusion - not quite 'with it'

In extreme cases, and if left untreated, the symptoms become much worse and can include:

  • Vomiting
  • Drowsiness
  • Dehydration
  • Confusion - difficulty thinking and speaking clearly
  • Agitation
  • Muscle spasms, tremors.
  • Bone pain and weakness
  • Irregular heart beat
  • High blood pressure
  • Loss of consciousness
  • Coma and, rarely, death

Hypercalcaemia can be a life threatening condition if it is not treated.

 

Long term complications

Complications may develop over time and can include:

  • Kidney stones. Small stones may be passed in the urine without you noticing but larger stones may get stuck. This can cause pain in your loin area that radiates to your groin. You may also notice blood in your urine.  
  • Kidney damage. Continual high levels of calcium in your blood can damage your kidneys and cause kidney failure.
  • Corneal calcification. Calcium can be deposited (collect) in the cornea of your eye but this doesn't usually cause any symptoms.
  • Pancreatitis. Rarely, high calcium can cause inflammation of your pancreas gland which causes upper abdominal pain.
  • Peptic (stomach) ulceration. High calcium levels can stimulate the production of excess acid in your stomach and lead to stomach ulceration. 
  • Osteopenia Increased parathyroid hormone in your blood causes too much calcium to be released from your bones which can lead to weakness and bone pain. It also makes the bones more susceptible to fractures or breaks.
  • Neurological conditions Because calcium plays a role in the normal working of the brain and spinal cord, patients with severe long term hypercalcaemia may also develop fits, unco-ordinated muscles ( affecting walking, talking and eating), changes in personality and hallucinations.

The severity of your symptoms doesn’t always match up to the calcium level in your blood. People with a slightly high calcium level can have very severe symptoms, and people with a very high calcium level may only have mild symptoms.

 

Diagnosis

When there are no symptoms, hypercalcaemia can be difficult to diagnose. Sometimes it may be discovered by chance or you may already have kidney stones or pancreatitis. Some people live unwittingly with hyperparathyroidism for many years before getting a diagnosis.

In a straightforward case, blood tests will show a high level of calcium, a high level of parathyroid hormone and usually, a low level of phosphate in your blood.

However, this isn't always an easy condition to diagnose. Sometimes your tests will be normal but you may still be symptomatic. This is much harder to diagnose and the UK 'watch and wait' policy can often lead to much distress.

You will need other tests to check how your kidneys are working, to measure the density of your bones and to look at the parathyroids themselves. Some tests can be done at your surgery but you may also be referred to hospital for further investigations by a specialist.

Further tests should include blood tests for vitamin D, kidney function, a kidney scan and a 24 hour urine test; a bone DEXA scan and x ray; a scan (and maybe a biopsy) of the parathyroid glands.

 

Treatment

If you have hypercalcaemia, you will need treatment from your endocrinologist. 

Mild cases 

Your doctor may decide to monitor your levels for a while before taking further action. If you are unhappy about this, ask to see a specialist. You should, in any case, be given regular blood tests, a DEXA bone scan and a 24 hour urine test.

Self help - drinking more water, eating fewer calcium foods and taking more excercise may sometimes be enough action to bring your calcium levels down.

Drug treatment is available for more acute cases or where surgery is not possible:

  • Bisphosphonates -  to help improve bone density and correct your high calcium levels
  • Cinacalcet - to reduce calcium and parathyroid hormone levels and increase the phosphate level in your blood. (This does not seem to improve bone density.)
  • Sometimes hormone replacement therapy is helpful for women who also have menopausal symptoms

PLEASE NOTE: If you have hypoparathyroidism, but your calcium levels are unstable, they can sometimes go TOO HIGH as well as too low. You may have to spend a day or two in hospital having your levels monitored by blood tests. You may be given medication and a drip to help get your calcium levels down.

 

Surgery 

This is the most effetcive treatment available at present. If your hyperparathyroidism is severe or your bones become too thin, the offending parathyroid gland (s) can be removed by surgery. This operation is called a parathyroidectomy and usually brings about an instant cure. All abnormal glands need to be removed. If all four parathyroid glands are overactive, usually three-and-a-half of the glands are removed so that you have some remaining parathyroid tissue.

 
Follow up

Your calcium level will need close monitoring after surgery to ensure that it returns to normal and does not drop too low. You will have regular follow up appointments for blood and urine tests until your levels are stable.

Possible complications after surgery

Complications do occur, though rarely.

If at any time you feel symptoms returning or you have 'pins and needles' or cramps, it is very important that you see your doctor as soon as possible.These symptoms are is a sign of hypocalcaemia or low calcium levels caused by hungry bones. Mostly, this is transient and levels will return to normal  in a few weeks or months. But it may lead to permanent hyporathyroidism and low calcium and you will need lifelong medication . 

Sometimes, the parathyroid glands can be hard to find so make sure your surgeon is experienced in these operations. You do not want to end up with Hypoparathyroidism and not enough calcium. Get a scan, find out which glands are affected and insist that you need to keep at least half a parathyroid gland to maintain your calcium levels. Take control! 

Occasionally, there may be damage to the larnygeal nerve or vocal chords which can affect your voice. This usually clears up within 6 months or so. If not, an ENT appoointment should be made for further investigations.

 

Self help

Dehydration from being sick a lot or having diarrhoea can increase calcium levels. Drinking plenty of fluids and staying as active as possible can help to bring levels down. Come and join our forum and talk to others in the same boat.


Secondary Hyperparathyroidism

Here, the high level of parathyroid hormone is caused by another condition or deficiency. This condition causes chronic low calcium levels in your blood so your parathyroid glands have to work extra hard to try to raise your blood calcium level and release more parathyroid hormone . Tests will show a raised level of parathyroid hormone and a low blood calcium level.

Causes

  • If you have an intestinal or gut condition, such as Crohn's Disease, you may have a problem absorbing calcium from your food into your blood causing persistently low calcium levels.
  • Vitamin D deficiency(which can cause rickets in children or osteomalacia in adults) is another common cause of  chronic low level of calcium in your blood.
  • The most common cause of secondary hyperparathroidism is kidney disease.  It occurs in nearly all people who are on long-term kidney dialysis because of kidney failure. Because you have kidney failure, your blood calcium level can become chronically low.

Symptoms

In Secondary Hyperparathyroidism, you will have symptoms of low NOT high calcium which can be seen here. But - you may develop bone complications (see osteopenia above) and the symptoms related to that.

In secondary hyperparathyroidism, you will have a low or normal calcium level with a raised parathyroid hormone level. In kidney disease, your blood phosphate level can be high because your kidney cannot get rid of phosphate in your urine.

Treatment

In Secondary Hyperparathyroidism , the underlying condition needs to be treated; for example, vitamin D deficiency needs to be treated with vitamin D supplements. Early treatment of secondary hyperparathyroidism can prevent bone complications and reduce the chance of tertiary hyperparathyroidism. Surgery to remove abnormal parathyroid glands may be considered if secondary hyperparathyroidism is severe and does not respond to medical treatment 

Chronic kidney disease

If you have chronic kidney disease, treatment may include:  

  • Drugs to lower blood pressure.
  • Diet to lower your phosphate level ( limits milk, cheese, eggs and dairy products  ). You may also need some medication such as calcium carbonate whichs binds to phosphate and helps to stop it being absorbed from your gut after you have eaten.
  • Calcium supplements and active Vitamin D ( such as Alfacalcidol or Rocaltrol) to raise your calcium level as vitamin D3 can no longer be converted to the active form of vitamin D by your kidneys

You will be monitored with regular blood tests and shouls have an eGFR test annually.

Self help

  • Follow a low phosphate diet - see members page and forum for more information) 
  • Limit salt in your diet 
  • Drink about 2 litres of water daily.
  • Lose weight if necessary
  • Stop smoking
  • Take regular exercise.

For further information on kidney disease please visit NHS Choices or the National Kidney Federation


Tertiary Hyperparathryoidism

Causes

Tertiary Hyperparathyroidism occurs when Secondary Hyperparathyroidism goes untreated for too long. There may be continuing problems even when the original condition has been treated and calcium levels are back to normal. This is because the over used parathyroid glands can no longer switch off hormone production as they used to do when calcium was low and carry on producing large amounts of parathyroid hormone. This results in a high calcium level in your blood and  is called Tertiary Hyperparathyroidism. It is mostly found in people with chronic kidney failure and sometime continues even after a kidney transplant.

Symptoms

The more severe symptoms above are also present in Tertiary Hyperparathyroidism.

Treatment

This is usually by surgery to remove the overactive parathyroid glands. Sometimes, a small amount of one of the glands is transplanted into one of your forearms ( where it is easily accessible) in the hope that this tissue will be enough to to control calcium levels.


See also WD Fraser : Hyperparathyroidism

Lancet 2009 Jul 11;374(9684):145-58.

Thanks to Cancer Help UK who gave permission for us to use some of this information


   
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