What is Hypoparathyroidism?
Hypoparathyroidism (commonly known as ‘hypopara’) is a rare endocrine condition which may be transient or permanent. There is no cure for permanenet hypopara. It is caused when the parathyroid glands in your neck are inactive or produce too little parathyroid hormone (PTH) – which in turn leads to low blood calcium levels or hypocalcaemia.
Hypocalcaemia can be a serious condition if left untreated so calcium levels need careful management and regular monitoring.
What causes hypopara?
The most common cause is destruction of the parathyroid glands during neck surgery (80% of patients in our survey contracted hypopara as a result of neck surgery). This may be temporary or permanent. The glands may also be damaged by the immune system (autoimmune). Some people are born with the condition (congenital) or develop it later in life due to a genetic cause. Sometimes the cause is unknown (idiopathic). Read more about the causes of hypopara
How rare is hypopara?
No-one knows for sure as there are no figures for the UK. A Danish study suggested that 27 in every 100,000 people have hypopara. It seems to be more prevalent in women than men and rates of surgical hypopara are increasing as the number of thyroid cancer cases rise.
What are the symptoms of hypopara?
People with all types of hypopara experience symptoms caused by their low blood calcium levels, known as hypocalcaemia. (Low PTH itself does not cause symptoms.)
This is a very individual condition. Not everyone experiences the same symptoms or in the same way. Many people have no symptoms once medication is properly adjusted while others may continue to experience mild or severe symptoms. Calcium fluctuates in response to daily life. ( See our Self Help Guide). Calcium needs can also change gradually over time and levels must be regularly monitored for life to avoid crises.
Low calcium (hypocalcaemia) causes tetany. Tetany causes a range of symptoms which get progressively worse without treatment.
Early symptoms of tetany are:
- Sudden exhaustion
- Tingling/numbness in hands or feet
- ‘Brain fog’
- Blurred vision
- Sensitivity to sounds
- Extreme weakness
- Varying degrees of ‘inner trembling’
Calcium levels can also swing too high if too much medication is given. Read about the symptoms of high calcium (hypercalcaemia).
How is hypopara diagnosed?
When hypopara occurs as a complication of surgery, symptoms may start within hours to a few days after surgery, and sometimes longer. You should call your hospital immediately if you start to feel ill. This can be temporary. If you are still symptomatic on medication after 6 months your condition is likely to be permanent.
Diagnosis of a non surgical type of hypopara can typically take a lot longer as these conditions are even more rare, and none of the symptoms are specific to hypocalcaemia so hypopara can be hard to identify. It is frequently misdiagnosed. Some people may have lived with unrecognised hypopara for years until a routine calcium blood test is done. The initial diagnosis is often done by your GP who will assess your symptoms and take a simple blood test to measure your blood calcium levels.
If this is unusually low, further blood tests will be required: Your GP (or Endocrinologist) may also check:
- Parathyroid hormone (PTH to see if your parathyroid glands are functioning)
- Phosphate level – this is usually raised in hypopara
- Kidney function (low blood calcium levels can cause the kidneys to malfunction)
- Magnesium (low magnesium levels cause low calcium levels)
- Vitamin D levels (Vitamin D is essential in helping the body absorb and use calcium, along with magnesium)
If hypopara is suspected, all patients (whether surgical or not) should be referred to an endocrinologist (a doctor who specialises in hormones) for lifelong care. Ideally, as this is a rare condition, this should be a specialist in calcium or bone metabolism. Read more about all types of hypopara and related conditions.
What is the treatment?
Current treatment is with oral active vitamin D and calcium tablets but this is not ideal and can lead to other health problems. New treatments are currently being trialled . Read more about clinical trials
Treatment for hypopara is essential and lifelong so it is important that you take your pills every day. You are entitled to free prescriptions – ask your GP for a form.
Note: If you have temporary hypopara after surgery you will be able to come off medication once your parathyroid glands start to work again. Generally a PTH level of around 18ng/mL is required for this to be possible. These are the pills you will need:
‘Active Vitamin D’ capsules
Alfacalcidol or calcitriol are the two types of active Vitamin D available. They are only available on prescription and are very potent, being more of a hormone than a vitamin. They help the body to absorb calcium from your diet. Note: these are not the same as Vitamin D3 capsules you can buy over-the-counter at a chemist, which you also need.
In most people’s metabolism, PTH drives the conversion of vitamin D3 into the ‘active’ form of vitamin D. Without PTH, the bodies of people with hypopara cannot do this, so the Alfacalcidol or calcitriol supplements provide a supply of the essential active vitamin D.
Good levels of vitamin D3 are important for everyone especially people with hypopara and should be checked twice a year. A deficiency can affect your calcium stability and cause bone pain, weakness and fatigue. These vitamins are available on prescription or over the counter.
Magnesium is very important for the absorption of calcium and vitamin D and helps to banish cramps. Magnesium also helps to keep calcium out of soft tissue and in the bones. Low magnesium levels can cause low calcium levels so should be regularly monitored.
Chewable calcium supplements
Calcium tablets help to boost your calcium level temporarily and the effect lasts a few hours. Only 500mg calcium can be absorbed by the body at a time so it is best to split your tablets over the day. You can even take a quarter or half a tablet if that works for you. In a very small number of cases, or after surgery, taking additional calcium tablets may be enough to manage your condition, but most people will not achieve adequate calcium control with calcium supplements alone. Taking too many supplements can cause kidney problems which is why a maximum of 2 tablets a day is recommended. Many people prefer to get their calcium from food and keep tablets just for emergencies.
Thyroid hormone replacement is needed if you had your thyroid gland, or part of it, removed or if you have low thyroid hormone levels. This should be taken at least 2 hours apart from calcium and magnesium medication if possible which can be difficult for people with hypopara. Thyroid hormone levels need to be regularly monitored.
Hypopara is a rare condition that required lifelong care. You will be regularly monitored by your endocrinologist at your local hospital or your nearest specialist hospital. At these appointments you will be able to discuss how you’ve been feeling and have regular blood tests to check all is well. In between appointments you will be cared for by your GP under instruction from your endocrinologist.
There isn’t a simple finger-prick test to measure blood calcium levels in the same way that people with diabetes can monitor their blood sugar levels at home. It’s a more complicated test. Blood must be taken from your arm at your GP surgery or hospital phlebotomy department. We are working hard to bring about the development of an affordable home calcium blood tester. Read more about how hypopara is treated.
Liz and her colleagues are amongst the nicest, compassionate friendly helpful people I have ever met. This page and the website are full of such useful information and if it isn’t there someone in the group is always there to help. If they don’t know the answer they will search or ask professionals who do.
The members follow the leaders which give a lovely atmosphere and makes it easy to come and rant because you know that others on here understand how frustrating things can be.
What are the hopes for future treatment?
Ultimately, replacing the faulty hormone is likely to be a better treatment for hypopara than compensating for the effects of its absence. In the UK, a clinical trial of an injectable parathyroid hormone PTH 1-84 ( Natpar) is underway and an oral PTH is also in the offing. We hope that this replacement hormone will become available to all hypopara patients soon. Meanwhile, we raise awareness about hypopara on a global level, help to educate the medical profession about our quality of life and work closely with our specialist advisors to bring about research, currently on PTH transplantation, PTH stem cells and intra- operative imaging devices for monitoring glands during surgery.
What can I do to manage my calcium levels?
Managing your calcium levels can be challenging at times but there are ways you can help yourself feel better. For example, people living with chronic hypopara need to become accustomed to listening to their own body and recognising their unique warning signs of a drop in their calcium levels. This takes time to learn but can help to avert crises. Find out everything you need to know about this, and more, in our self help guide.
Calcium levels should be one of the standard tests for GPs. I would have been diagnosed possibly years ago if this was the case.
How will having hypopara affect my life?
Many people with hypopara lead perfectly normal lives, work full time, have families and even run in marathons. However, for others, symptoms can sometimes have a significant impact on a patient’s ability to do the things that matter to them, such as going to work or socialising with their friends and family. We asked people living with hypopara how their condition affected their ability to perform everyday activities: