If you think you might have hypoparathyroidism (hypopara) then you need to get checked out because it requires specialist medical treatment.
The most common causes of hypopara:
- Recent neck surgery (this accounts for approx 80% of hypopara cases)
- Congenital – babies can be born with hypopara, though it can be a very harmful condition in newborns and it is likely to be picked up on and diagnosed in hospital.
Hypopara is a very individual condition – no two people have the same symptoms, and the blood calcium levels at which they experience symptoms can be very different too.
That said, here are the most common symptoms of hypocalcaemia ( i.e. the low blood calcium levels caused by hypopara). Except for tetany, none of these symptoms are unique to hypopara, and so people with the genetic or autoimmune condition may have experienced some of the milder symptoms for years and only get a correct diagnosis when the neuro-muscular muscle twitching becomes noticeable.
- Tingling/numbness in hands or feet
- ‘brain fog’
- blurred vision
- sensitivity to sounds
- Extreme weakness
- varying degrees of ‘inner shaking’
- ‘Tetany’ – i.e. involuntary contraction of muscles – which may progress to seizures which paralyse the entire body.
What to do next
You could call our patient helpline:
Or you might like to join our community. That way you can join our private Facebook Group and get some advice or support from our members.
If you have recently had neck surgery:
This is the most common cause of hypopara (80% of people with hypopara in our survey had contracted it after surgery). The parathyroid glands can become damaged during surgery for thyroid cancer. If you’ve had neck surgery in recent weeks your surgeon or endocrinologist will still be in touch with you for your post-surgery care.
The symptoms of hypopara usually appear soon after surgery. Measuring your calcium and parathyroid hormone (PTH) levels should be part of your follow up. Hypopara should be ‘on their radar’ and its unlikely you will develop the condition without them diagnosing it. Your surgeon should be your first port-of-call about any concerns you have about hypopara.
Sometimes the parathyroid glands damaged in surgery will heal in time – so hypopara can be a temporary condition. You might be prescribed some calcium tablets to help maintain your blood calcium levels whilst waiting for your glands to recover and start producing the PTH hormone again (the one that helps regulate your calcium levels). If your PTH levels haven’t recovered after six months then it’s likely that your hypopara will be a permanent condition.
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If you haven’t recently had neck surgery:
If you suspect you might have a genetic, autoimmune or other cause of hypopara then there’s a good chance that you’ve been forward and back to your GP many times as you both try to diagnose your symptoms.
Ask your GP for a blood calcium test. Bear in mind that calcium levels can fluctuate a lot day-to-day so even if your results were in the ‘normal’ range once, it’s worth having them re-tested. Some hypopara patients can also experience symptoms in what is normally considered the normal range.
Whilst you’re having a blood test, ask your doctor to include a Parathyroid Hormone (PTH) test as part of it. PTH is the hormone that regulates your blood calcium levels, and people with hypopara don’t produce enough of it. A PTH test is the one that will likely be conclusive one way or the other in diagnosing whether you have hypopara.
You may need to be persistent with your GP – remember that many of them will never encounter a case of hypopara during their career and it’s not something they’ll routinely be looking out for.
If it helps you could take a copy of this patient leaflet with you and/or a copy of [the Shire report] if you feel that some of the symptoms or stories in there ring true with your own experience.
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MICHAEL, FACEBOOK GROUP MEMBER
How long will diagnosis take?
A proper blood test is the key to unlocking your diagnosis. Post-surgery this will be a routine part of your follow-up and you should normally be diagnosed within a couple of weeks, though no-one will know for sure whether the condition will be temporary or permanent at this stage.
Via your GP, blood test results normally take about a week to come back. Low blood calcium levels may prompt another test or a PTH test if it wasn’t done first time around.
If your calcium and PTH levels are low then you should be referred to an endocrinologist (a specialist in hormones). This process can take months, and if yous symptoms are severe or getting noticeably worse you should insist on having an ‘urgent referral’ which will speed the process up.
Sometimes your GP will diagnose you with hypopara, but more often than not they’ll wait for a an endocrinologist to officially diagnose you. This means that you can be left in limbo for months whilst waiting for a diagnosis.