FAQs About Hypoparathyroidism
by Dr Denise Adams, GP and HPTH patient
The following comments relate to the type of hypoparathyroidism that is treated with calcium supplements and/or calcitriol (Rocaltrol) or alfacalcidol (One Alpha). This includes patients with hypoparathyroidism following thyroid surgery or parathyroid surgery, and most of those with hypoparathyroidism due to other causes.
If you have developed hypocalcaemia slowly, and you have not had thyroid or parathyroid surgery, it is important to seek the opinion of an endocrinologist who has an interest in calcium metabolism. The diagnosis is important, as the treatment described here may not be appropriate in these circumstances.
This information is for guidance only and treatment must be tailored to the individual. You should never undertake self-treatment without previous discussion and approval of a management plan with your doctor.
What treatment is recommended for hypoparathyroidism?
Most patients require treatment with calcium and/or calcitriol or alfacalcidol. In some countries calcitriol or alfacalcidol but not both are available. This does not matter as either can be used to treat hypoparathyroidism.
Calcium may be the only treatment required. The maximum recommended dose of elemental calcium is about 2000 mg daily in divided doses. In patients who develop hypocalcaemia after thyroid or parathyroid surgery it is common to start with calcium alone, as many patients only need it for a very short time. However, if patients continue to have symptoms or low blood levels of calcium it may be necessary to take calcitriol or alfacalcidol. Patients who have had parathyroid surgery for hyperparathyroidism may require both calcium and calcitriol or alfacalcidol for a few weeks or months following their surgery.
If treatment with calcitriol or alfacalcidol is necessary it is usually advisable to stop taking calcium supplements if possible. This means increasing the dose of calcitriol or alfacalcidol until the symptoms are controlled and the calcium level is preferably in the lower end of the normal range or even below it. There should be enough calcium in a normal diet to meet requirements as long as enough calcitriol or alfacalcidol is taken to enable the calcium to be absorbed from the gut. For some this will result in excellent control of calcium levels but for others the control may be nowhere near as good as that provided by properly working parathyroid glands. Some patients will need to take both calcium and calcitriol or alfacalcidol in order to achieve reasonable control of their calcium levels.
How is the dose of calcitriol or alfacalcidol adjusted?
Once on treatment the dose is adjusted according to your symptoms and calcium levels in the blood. Usually the dose is increased or decreased by one 0.25microgram tablet with blood tests a few days to a week later. The aim is to keep the serum calcium level high enough so that you feel well but preferably at the lower end of the normal range for ionized or serum calcium. Even when no adjustments are being made it is still very important to monitor your calcium levels on a regular basis to make sure that you are not developing hypercalcaemia. A blood test every three months is recommended for patients whose serum calcium and symptoms are stable with more frequent tests for those who are not stable. Many people, once treated, rarely have to adjust the dose but others find they have to make regular dose adjustments for no obvious reason. It is worth bearing in mind that doses may need to be changed when altering other treatments like L-thyroxine (thyroxin), estrogen, diuretics or steroids. Other conditions can affect calcium levels such as diarrhoea and vomiting, moving to a different climate, dehydration, increase in exercise, pregnancy or when women go through the menopause. It may be necessary to have your calcium level checked more often in any of these circumstances.
When should I take calcium supplements?
If you need to take regular calcium supplements do not take them all at once but spread the dose over the day.
Some people develop symptoms of hypocalcaemia in response to exercise, stress, illness, changes in other medication or inadequate treatment. In these circumstances a calcium supplement is a quick way to replace calcium and may be all that is needed. If the hypocalcaemia is more persistent then an increase in the dose of calcitriol or alfacalcidol may be appropriate but get your serum calcium checked first as you may be wrong! You should discuss the management of these situations with your doctor so that you have a plan to follow. You may find it helpful to think of calcitriol and alfacalcidol as the slow onset but steady provider of calcium with calcium supplements as a quick acting extra when required. Aim to be on calcitriol or alfacalcidol without regular calcium supplements if possible.
Will I need to adjust my diet?
Basically, if you take calcitriol or alfacalcidol you are effectively dependent on it for the absorption of calcium. Normally parathyroid hormone ensures that the calcium level in the blood is controlled very precisely. Without this control you are in charge of your calcium. The dose of calcitriol or alfacalcidol generally stays the same but your diet and other influences may vary. Consequently, there may be a chaotic element to the control of your calcium levels. You may find that you have to limit your intake of calcium containing foods and spread your consumption of them through the day in order to avoid swings in your calcium level.
What are the side effects of treatment?
If you take too much calcitriol or alfacalcidol you will eventually develop hypercalcaemia. This means that there is too much calcium in the blood. It is possible to develop hypercalcaemia without any symptoms, which is why it is so important to have your serum calcium checked regularly. However, hypercalcaemia may be associated with symptoms, which include headaches, nausea, muscle aches and pains, constipation, indigestion, irritability, thirst, drowsiness, and mental illness. If you develop these symptoms you should contact your doctor or nurse urgently to discuss further management. If hypercalcaemia is left untreated it can ultimately result in kidney failure. Usually, this situation can be avoided by having your serum calcium checked regularly.
If you are under-treated you may have symptoms of hypocalcaemia, which may include tingling, muscle aches, stiffness, muscle twitching, muscle spasms, seizures, diarrhea and fatigue. If you develop these symptoms you may need to contact your doctor or nurse to discuss adjustments to your treatment.
Calcitriol and alfacalcidol are very potent drugs and do carry a risk of side effects, but it is important to remember that people feel ill due to untreated hypoparathyroidism and this too can have serious consequences. There are no alternatives to this treatment at present and the side effects can be minimized with regular checks of your serum calcium levels. The availability of calcitriol and alfacalcidol has revolutionized the treatment of hypoparathryoidism and most people eventually feel well again.
Will this treatment affect my kidneys?
Many people are worried about taking calcitriol or alfacalcidol because of concern about kidney failure. This may occur when there is too much calcium going through the kidneys leading to calcium deposition in the kidneys, which may result in kidney failure. This risk can be minimized by regular checks on your serum calcium level so that it is kept within the normal range (preferably at the low end of the normal range) or even below it.
Is it necessary to see a doctor regularly?
Yes. Although you will become an expert in controlling your hypoparathyroidism it is still important to have regular follow-up. At present the only way to check serum calcium is with a blood test that is not readily available except through your doctor or nurse. Although many patients may feel that they know when their calcium level is too high or too low you still need blood tests to check the level. It is possible for serum calcium to creep up without much in the way of symptoms, even if you have had symptoms previously, and the only way to get an indication of your calcium control is with a blood test.
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