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Hypoparathyroidism leaflet web

Your GP or Endocrinologist may also check: What do I need to know about my medication?
Hypoparathyroidism
The aim of treatment is to abolish symptoms –
not to restore ‘normal’ calcium levels in the
When hypoparathyroidism occurs as a complication • In the absence of PTH, higher levels of calcium of surgery, the symptoms may start within hours to are found in the urine for a given blood calcium You have been diagnosed with hypoparathyroidism.
level. This can cause kidney stones or calcium Here is some information to help you manage your a few days after surgery. Diagnosis of a rare deposits in the kidneys (nephrocalcinosis), even genetic condition may take a little while.
when blood calcium levels are in the ‘normal’ How is hypoparathyroidism treated?
In the UK, you are likely to be prescribed: • The target range is between 2.0-2.25mmol/L of What is hypoparathyroidism?
adjusted calcium levels. The target range is Hypoparathyroidism (HPTH) is a rare disorder in • Calcium: Mild disease can be treated with approximate and depends on patient symptoms.
which insufficient levels of parathyroid hormone calcium supplements alone. Each tablet of • This is achieved with an appropriate dose of Calcichew®, Cacit® and Calcium-500® contains alfacalcidol or calcitriol so that most of your Parathyroid glands are four small glands which 500mg; Adcal® contains 600mg; Sandocal-400® calcium can come from your diet and you will lie behind the butterfly-shaped thyroid gland in not need to take too many calcium supplements. your neck. These glands produce parathyroid 1000mg of elemental calcium respectively. High The doses are typically split over the day.
hormone (PTH), which closely regulates calcium doses (>2000mg per day) should generally be • Calcium should be taken at meal times.
levels. Calcium is important for functioning of • It can take several months to get the balance nerve, muscle, bone and other cell functions.
• Vitamin D: Most patients will not achieve adequate control with calcium alone. Active forms of vitamin D such as calcitriol or
• Over time, your medication requirements can What causes hypoparathyroidism?
alfacalcidol are favoured over high dose
also change. This is often revealed by an increase The commonest cause is destruction of the colecalciferol or ergocalciferol. They are easier or decrease in your calcium levels which you may parathyroid glands during neck surgery. The glands to adjust in response to calcium levels. may also be damaged by the immune system. Some Maintenance dose of calcitriol or alfacalcidol is • You and your doctor need to learn to recognise people are born with the condition (congenital). typically between 0.5 – 2.0 micrograms daily. Sometimes, the cause is unknown (idiopathic). Doses up to 3.0 micrograms are often required. medication may be adjusted accordingly.
Calcitriol (Rocaltrol®) capsules come in 0.25 • Symptoms can still be felt when the test results How is the condition diagnosed?
are in the normal range (2.20 – 2.60 mmol/L) The initial diagnosis is often done by your GP who microgram (white capsules). Alfacalcidol which is a wide range. If your levels are will assess symptoms and take a simple blood test (nonproprietary) capsules come in 0.25, 0.5 and unstable, keep a diary of test results, doses and to measure calcium. If this is low, you will be symptoms to help you recognise your symptoms • Magnesium may need to be corrected in postsurgical HPTH if levels are found to be low.
Diagnosis is by means of blood tests showing: • Levothyroxine (thyroid hormone replacement) is What should I do in a crisis?
• Low parathyroid hormone (PTH) levels and
needed if you had your thyroid gland removed. • A ‘crisis’ can arise out of very low or very high • Low calcium (called adjusted or corrected serum medication if possible (ideally 4h, at least 2h).
• Seek help. You can contact your Endocrine Specialist Nurse, Endocrinologist or your GP.
Usually, daily treatment is essential and lifelong.
• Your calcium may need to be increased or cut However, post-surgical HPTH may resolve. The level of calcium in your blood will need to be checked to • You must never adjust your alfacalcidol or
Low calcium (hypocalcaemia)
• If symptoms persist or get worse, seek help and Living with hypoparathyroidism
Early symptoms include varying degrees of ‘inner
Many people with HPTH can expect to lead normal shaking’, dizziness, ‘brain fog’, blurred vision, • Stopping the tablets altogether can lead to big irritability, sensitivity to sounds, diarrhoea, swings in calcium levels. Do not do this on your • With permanent but mild HPTH, temporary anxiety, extreme weakness, chills, headache. symptoms may occur from time to time.
‘Tetany’ is involuntary contraction of muscles • Severe HPTH is rare but you may experience Taking Tablets
constantly unstable calcium levels (or brittle • Symptoms can arise through, or be made worse Always carry spare medication with you.
HPTH ) and a range of symptoms which can be by, anxiety and over-breathing. It is important • Try to maintain a month’s supply in reserve.
very challenging. You should be referred to a • Carry an extra supply of medication on holiday.
• Most mild symptoms usually pass.
• Carry your medication in your hand luggage • You may experience episodes of unusual fatigue • If they don’t, try drinking some milk or calcium when travelling by plane, with prescription or muscle weakness. At times you will need to fortified orange juice or eating some food.
allow your body to catch up, with extra rest.
• If after an hour symptoms still do not improve, take an extra calcium tablet. Stay calm and keep Does anything affect my calcium level?
pregnancy and a normal childbirth. Calcium, warm. Calcium tablets take about 20 minutes to • Diet: It is better to get your calcium from your
vitamin D and thyroid hormone doses may need food than from supplements. However, some • Sometimes you may just need to take some of foods, e.g. too much wholemeal bread, spinach • You may need extra medication during your day’s dose a little earlier than usual or tomatoes, alcohol and fizzy drinks can strenuous physical exercise. Rarely, with severe deplete calcium. Dehydration also affects HPTH, exercise may be difficult with bone pain • If this keeps happening you should get a blood calcium levels: drink eight glasses of water daily.
and muscle weakness. Try to be gently active.
test as it might mean your medication needs • Calcium levels can be affected by: illness, infection, fever, sweating, vomiting, diarrhoea, • If you feel severely unwell or there is a sudden dehydration, surgery (including dental), stress, Further information and support are available from onset of severe symptoms, don’t wait, take extra Hypoparathyroidism UK, a national voluntary
medication and call your doctor. You need to organisation, working to support people with (oestrogen affects calcium), exercise, and take sufficient extra medication to prevent a hypoparathyroidism and other rare parathyroid various medications (e.g. iron, aspirin, diuretics, crisis. An emergency injection of calcium may be conditions and to promote better medical bisphosphonates, beta-blockers, PPI’s).
understanding. Hypoparathyroidism UK offers a needed if your calcium levels have dropped very website, a telephone helpline, and free membership What kind of medical support will I need?
that includes an online forum and newsletters.
• Endocrinologist: Initial visits at the outpatient High calcium (hypercalcaemia)
department may be frequent (about 3 monthly), Warning signs include thirst, frequent urination,
then 6-12 monthly visits afterwards.
severe headache and nausea, stomach ache, GP: Your GP will continue to provide advice depressed mood, constipation, extreme fatigue, in-between visits. Your GP will issue repeat heavy, painful limbs, confusion. None of the prescriptions. You are entitled to receive your medication free of prescription charges. Your GP conditions other than raised calcium.
Mild symptoms may be averted by drinking water.
MedicAlert: We recommend that you wear a This leaflet has been prepared by the HPTH UK Clinical MedicAlert bracelet. Hypoparathyroidism UK Advisory Team and HPTH UK in conjunction with TheSociety for Endocrinology. HPTH UK Clinical Advisory members are entitled to a 5% discount.
Team is a group of Endocrinologists with an interest inthe parathyroid glands and calcium metabolism whoadvise HPTH UK on medical matters.

Source: http://www.uksponsorship.com/hpth_onscreen.pdf

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