Primary hyperparathyroidism might be one of those diseases where the name is more painful than the symptoms.
But if we break it down, we can see that this over-complicated word is actually a little story about what’s happening in your body.
Hyper means “too much”. Para means “beside”. The thyroid is a gland in your neck that makes important hormones. And ism just means that it’s a thing.
Combining these all together, hyper-para-thyroid-ism literally means “too much of the thing next to the thyroid gland”.
“Primary hyperparathyroidism is a common endocrine problem that is thought to affect 1 in 100 people during their lifetime” says Dr Liz Wootton, an Endocrinologist at the Royal Brisbane and Women’s Hospital in Queensland.
“There are three different types of hyperparathyroidism: primary, where one or more of the parathyroid glands becomes inappropriately over-active; secondary, where the parathyroid glands are appropriately over-active because of another problem like vitamin D deficiency; and tertiary, where the parathyroid glands are over-active due to kidney failure.”
Strangeness in a strange gland
While your thyroid gland is responsible for pumping out all sorts of useful hormones, the four tiny parathyroid glands only have one job: making sure you have the right level of calcium in your body.
They do this by detecting calcium in your blood. If the level is too low, the parathyroid glands release the aptly-named parathyroid hormone (PTH). This travels through the body and works with vitamin D to tell the bones to release extra calcium, the intestine to absorb more dietary calcium and the kidneys not to pee out so much calcium.
Once the level of calcium is back to normal, the parathyroid glands stop releasing so much PTH.
But like any gland, sometimes the parathyroids can randomly grow nodules or become enlarged, and that means they start releasing too much PTH. This in turn tells your bones, intestine and kidneys to pump up the calcium as high as they can.
If left too long, the high level of calcium can cause your bones to become fragile, your kidneys to develop painful kidney stones, and you to feel tired and unwell.
When everyone knows you’re sick except you
In Australia, the pathologist will probably know you have primary hyperparathyroidism before you do.
This is because, like climate change or tooth cavities, primary hyperparathyroidism insidiously builds up in the background before you even realise anything’s wrong.
“Primary hyperparathyroidism used to be diagnosed by severe symptoms termed ‘stones, bones, moans and groans’ – broken bones, kidney stones, abdominal pain, and mental health disturbance” explains Dr Wootton.
But now in most developed countries, excess calcium shows up in a routine blood test before you even notice any symptoms. If your calcium level is abnormally high, then your doctor might order a followup test to check your PTH. This means you can be diagnosed and treated for primary hyperparathyroidism while you’re still happy and healthy.
Obviously it’s great that we can diagnose diseases before they cause any problems, but this also means that sometimes primary hyperparathyroidism isn’t taken as seriously as more dramatic or urgent conditions.
Cutting to the chase
In the majority of cases, the treatment for primary hyperparathyroidism is simple – surgery to remove the rogue gland. With the right surgeon, who does lots of parathyroid operations each year, this is a very safe and quick surgery.
But to do that, doctors have to work out which of the four parathyroid glands needs to go.
Inconveniently for doctors, people are opaque, and that makes it hard to see inside them. Necks are delicate and contain all sorts of important tubes, so it’s best not to go digging around in there.
So before going into surgery, you’ll have to get a few scans – usually an ultrasound and sestamibi or CT scan. As the parathyroids are small and tucked away, it usually takes a few different techniques to locate them precisely.
Dr Wootton’s PhD is about finding better ways to look at the parathyroid gland. “There is an exciting new imaging modality called [18F]fluorocholine PET/CT that is probably more accurate in localising abnormal parathyroid glands – unfortunately it is quite expensive, so we need a proper trial to look at the impact for patients and cost-effectiveness for the health system”
Don’t panic too much – or too little
In Australia’s public system, after your GP sees your blood test results and diagnoses you with primary hyperthyroidism, you’ll need to have some tests to check for problems with your bones and kidneys. Usually this is done with the help of an Endocrinologist.
If your kidneys and bones are in bad nick, or if your calcium level is very high, they should refer you to a surgeon, who will take a look at you, send you off to get some scans and then book you in for surgery.
As you trundle through the system you might be advised to get regular blood tests, stay well hydrated, or to take medication while you wait.
This process can be bureaucratic and time-consuming but it’s also pretty straightforward – and all bulk-billed (depending where you get the scans done).
But this doesn’t always go according to plan. Sometimes doctors don’t take primary hyperparathyroidism seriously enough, or, conversely, get overenthusiastic.
“Doctors can send patients to get scans too early – if they don’t actually need surgery for primary hyperparathyroidism then there is no point doing any scans” explains Dr Wootton.
“But also, equally they can wait too long to organise scans and refer to a surgeon. While primary hyperparathyroidism doesn’t usually change quickly, over time, it can lead to problems with bones and kidneys, as well as dangerously high calcium levels”
Listen to your body, even when it’s whispering
Primary hyperparathyroidism might start as a question mark on a routine blood test. But left untreated, it can quietly cause real damage to bones, kidneys, and your overall wellbeing.
We’re all tired and busy, so it’s easy to put things off for another day. This includes doctors, who might not be up to speed on the latest advice.
Thankfully, diagnosis is simple, treatment is highly effective, and in the vast majority of cases, primary hyperparathyroidism can be cured with surgery. The biggest challenge is making sure it’s taken seriously by patients, doctors, and the system alike.
If your blood test shows high calcium, don’t ignore it, and don’t let your doctor ignore it either. It might not feel dramatic, but your body could be telling you something important.
