Hypopara is defined as low or absent levels of PTH in the blood, accompanied by low calcium and increased phosphate levels in the blood. The symptoms can vary from mild (such as tingling in the extremities) to severe (such as laryngospasm and seizures).
The leading cause of hypopara is removal of or inadvertent injury to the parathyroid glands during surgery. Following this, up to 25–30% of people will develop transient post-surgical hypopara. This is the absence of PTH or low PTH levels lasting up to 6 months after surgery. If PTH levels are below the normal range for 6 months or longer, this is considered to be chronic post-surgical hypopara.
Delayed hypopara has also been known to affect people years after surgery, but this is very rare. This may be caused by age-related changes to the site of the surgery and the parathyroid gland.
SYMPTOMS AND COMPLICATIONS IN DETAIL
Hypopara is a rare disorder, where PTH levels in the body are low or completely absent, resulting in an inability to maintain normal mineral balance.
If hypopara is left untreated, blood calcium levels can become too low, known as hypocalcaemia. The most common treatment is through calcium and other supplements, which increase calcium levels in the blood. In some cases, this can cause blood calcium levels to become too high, known as hypercalcaemia. Both hypocalcaemia and hypercalcaemia primarily affect the nerves and muscles and, in turn, can cause symptoms in the heart, lungs, throat, stomach and brain.
Hypopara is rare and the symptoms differ from person to person. It is important to seek help from a physician if you experience a number of the symptoms below. Hypopara can be serious if untreated and can affect your daily life. If you have already been diagnosed and are being treated, go back to your doctor if: your symptoms worsen; new symptoms appear, even if seemingly unrelated; or if symptoms are a burden on your daily life.
Below is a list of some of the most common symptoms and complications people living with hypopara may experience. This is by no means an exhaustive list and is not to be used for the purpose of self-diagnosis, please call or see your doctor or other healthcare professional should you have any healthcare related question.
Paraesthesia is a tingling or prickling sensation, particularly in the fingers, toes and around the mouth, but can be felt all over the body. People commonly report this as feeling like pins and needles, numbness, and hot and cold sensations.
Pain can be experienced throughout the body, and is usually described as either being muscular pain and cramping, or pain associated with the bones and joints.
Many people with hypopara experience some disturbance to their bowel movements and some nausea.
Nails of individuals with hypoparathyroidism may be brittle, ridged, or become detached from the underlying skin.
The disruption of calcium levels can lead to an imbalance in normal bone deposition and removal. This can cause dental issues for people with non-surgical causes of hypopara, such as shortened tooth roots, weakened enamel, or absent teeth.
Breathing problems can sometimes occur due to spasms in the muscles of the lungs (bronchospasm) or the throat (laryngospasm). This can make talking and breathing difficult, and can potentially be life-threatening if severe. If you are experiencing breathing difficulties, contact your doctor.
Calcifications can occur in the joints (reducing mobility), kidney (leading to kidney stones), the eyes (cataracts and vision loss), and the central nervous system (neurological deterioration, seizures). Your doctor or endocrinologist may perform scans in order to identify calcifications.
Arrhythmias are rare, but have been known to occur in some people with chronic hypocalcaemia. This is due to the effect of low calcium levels on the heart muscle.
Depression in hypopara can be hard to characterise, and can be caused by a combination of the impacts that the physical and neurological symptoms have on quality of life.
Hypopara can lead to feelings of social isolation, both from feeling withdrawn due to the other emotional and cognitive symptoms, and the physical symptoms affecting ability to carry out day-to-day activities.
This is commonly reported by people with hypopara, and may feel like an inability to concentrate or focus, memory loss, mental lethargy, and feeling confused or glazed over.
Tetany is a term used to describe uncontrolled muscle contractions, which may include movements such as spasms, convulsions, twitches, cramps, or trembling.
Because of the effect of low calcium on the nerves and muscles, individuals with hypoparathyroidism may have reduced muscle strength and require more time to complete tests of physical function. This can make daily tasks much more difficult.
Dry, rough and puffy skin may be observed in some people with hypopara. Non-surgical hypoparathyroidism may be associated with recurrent Candida (a type of yeast) infections of the skin.
Hypoparathyroidism may cause hair to become brittle, dry, or cause hair loss. The hair, skin and nail changes that may occur in individuals with hypopara can greatly affect self-image, esteem and confidence, and can lead to anxiety, depression, and reduced quality of life.
Some people with hypopara find they are very sensitive to or intolerant of heat, and sometimes bright sunlight.
Non-surgical hypoparathyroidism is associated with an increased risk of cataracts. Post-surgical hypoparathyroid patients may also be at risk for cataracts due to calcium deposition in the eye. If you experience vision loss or blurry vision, contact your doctor immediately.
Hypopara can cause excess calcium and phosphate to be excreted in the urine. If too much of both of these are excreted, it can lead to an increased risk of kidney stones.
Symptoms can be made worse by anxiety and over-breathing, so it is important to remain calm – most mild symptoms will pass. If this is a repeat occurrence, you should consider meeting with your doctor to have a blood calcium test to see if your medication needs adjusting.
Some people with hypopara find they can be sensitive emotionally, which can include becoming extremely irritable or critical, and feelings of being misunderstood.
Tiredness or extreme fatigue is common amongst people with hypopara. In combination with the nerve and muscle weakness, this may make daily functioning difficult.
This is a rare symptom that can occur as a complication of severe hypocalcaemia and, in some cases, seizures may also occur as a result of hypercalcaemia. If you or someone you know experiences seizures, contact your doctor immediately.
HYPOPARA IN CHILDREN
Hypopara in children can be difficult to diagnose. The symptoms of the disease can often be confused for something else and it can take a while to get a diagnosis. Transient hypopara (hypopara that resolves within 6 months) can occur in newborns, with 50% of low birth weight infants experiencing this. However, if hypopara symptoms last for more than 6 months, this may be chronic, and may be due to a genetic cause. It is important for parents to seek advice from their paediatric physician if necessary.
The typical symptoms of hypopara are the same in children as in adults but it may take longer to get a diagnosis as symptoms may not be apparent until the child is older. More severe symptoms may be the most noticeable, such as wheezing, airway obstruction, cognitive impairment and seizures.
Living with a chronic health condition such as hypopara can be difficult for both parents and children, and outside support from a paediatric nurse may be helpful for ongoing care and expertise. The role of a paediatric nurse in helping with hypopara is providing education and emotional support, and helping to ensure adherence to therapy and follow-up care.
Management of hypopara can be complex, particularly if it is a life-long condition. There is a balance between therapy with drugs and preventing further complications. Both the child and their family will benefit from being well educated about their disease, medications and how to monitor symptoms. People with chronic hypopara and their families should remain vigilant even when it seems resolved, as hypopara may become “unmasked” due to stress, surgery or illness and may need intervention.
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Your responses to each question will guide you towards relevant information about hypoparathyroidism (also known as hypopara), details of the signs and symptoms, and support.
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How would you assess your current
understanding of hypopara?
I am unaware of what hypopara is, its signs and symptoms, and the long-term consequences.
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I can confidently explain what hypopara is, what its signs and symptoms are, and the long-term consequences.
Do you know any of
the long-term complications of hypopara?
Over time, people with hypoparathyroidism
commonly experience symptoms of ‘hypocalcaemia’ – when calcium levels in
the body are too low.
Because calcium normally plays an important role in the signalling of our nerves –
which help to coordinate our body and brain – long-term hypocalcaemia
can disrupt this process and make our day-to-day activities more
difficult.
Over time, people with hypoparathyroidism
commonly experience symptoms of ‘hypocalcaemia’ – when calcium levels in
the body are too low.
Because calcium normally plays an important role in the signalling of our nerves –
which help to coordinate our body and brain – long-term hypocalcaemia
can disrupt this process and make our day-to-day activities more
difficult.
For example, twitching and spasms can reduce your
physical ability, whereas brain fog or fatigue can make cognitive tasks
more challenging.
Do you know how hypopara can affect the quality of life?
Do you agree that hypopara can have an impact on one’s quality of life? Move the slider towards your answer.
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Often people find that the symptoms of hypopara can
reduce their physical ability, making it harder to do day-to-day activities.
These symptoms can also be difficult to manage
mentally,
and people can often feel anxious, isolated or down.
Therefore it is important to receive support from a doctor or nurse, family members, or other people affected by the disease. With support, hypopara can feel more manageable.
Often people find that the symptoms of hypopara can
reduce their physical ability, making it harder to do day-to-day activities.
These symptoms can also be difficult to manage
mentally,
and people can often feel anxious, isolated or down.
Therefore it is important to receive support from a
doctor or nurse, family members, or other people affected by the disease.
With
support, hypopara can feel more manageable.
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your
knowledge of hypopara now?
I am unaware of what hypopara is, its signs and symptoms, and the long-term consequences.
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I can confidently explain what hypopara is, what its signs and symptoms are, and the long-term consequences.
Thank you for taking the self-assessment
and learning more about hypopara!
By taking part, you are helping to raise awareness of hypopara.
What now?
For rare diseases like hypopara, the most important thing is for you to understand the signs and symptoms.
Always listen to your body. If you have concerns or would like more support, talk to your doctor.
