hyperparathyroidism child

[Justwanttovent]

TLDR - Since November my DS has had high calcium and low vitamin D. Think he has hyperparathyroidism. Can anyone whose children has also had this please tell me how it's been for their child and whether they had an operation or medicine?

My DS is 8 and for the last year or so has been complaining of pains in his legs. GP put it down to growing pains. My DS lost two baby teeth with the full root almost intact. Both times took him to dentist, both times dentist said teeth healthy, not a problem.

I wasn't convinced and in November asked GP for a blood test for DS. Came back low vitamin D, high calcium.

Since November he has had vitamins and several repeat blood tests. Each time vitamin d and calcium have both slightly raised.

He has another blood test booked in a few weeks and GP said if calcium is still raised then he will need a referal to an endocrinologist.

I mention his teeth as clearly there is a link with the calcium in his teeth and the calicum in his blood

I only have experience as an adult, but wouldn’t the obvious blood test be a PTH check? My primary hyperparathyroidism was first picked up because I had high calcium and low vitamin D, but it was confirmed with a PTH check. I had to have surgery, but it was completely successful and I now just have yearly PTH checks.

May I ask what surgery you had?

I've recently been diagnosed but know very little about it. My GP just prescribed me some vitamin D and sent me a link to the NHS website.

When his GP rang to discuss recent blood test results he said that DS's kidney function was fine and so was his phosphate. Are they part of the PTH check? GP listened to his heart at a recent check up too and wasn't concerned.

Maybe the GP said the names of the blood tests, I am AUHD and I struggle to process verbal information when stressed 😅🤦‍♀️

From what I've read people have surgery to remove somthing in a gland in their neck. Apparently it's classed as a minor surgery too. I think it's an endocrinologist who would do the surgery

I’ve had the surgery. You do need to check his parathyroid hormone has been checked (this is PTH) and that he has been referred to an endocrinologist. Would seeing anyone privately be an option?

https://parathyroiduk.org

The UK patient charity has very useful info on all this. If surgery is ever suggested it is VERY important to have it done by someone who frequently does these surgeries and to ask to see their outcome data.

GP is ringing me this week so I'll ask then what blood tests he's specifically had. I think he has had the PTH test though as a quick Google says the pth test is often used to assess kidney and phosphate levels - and the last time we spoke he said both were fine but calicum still raised and that's when he then went on to say if levels still raised then a referal to endocrinologist.

Private isn't an option unfortunately

🙈 oh God, would I have to ask them to their face for their outcome data 😅

Thank you for the link, very helpful

Not adding much to what @Scottishexplorer says, but the surgery was to remove one of my parathyroid glands because it had a benign tumour on it (you have four and three seems to be fine!) PTH is a specific test for the parathyroid hormone, so is a definitive test for primary hyperparathyroidism I think.

I didn’t go as far as asking for outcome data, but I did ensure that I got a surgeon who had significant experience of the operation.

Sounds like it’s very early days so I’d try not to worry too much at this stage. When you speak to the GP, you need to confirm if he had his PTH checked as part of his blood tests. If yes, was it higher than normal. If not, can he have it tested.

Given his low vit D levels, it may be that his higher calcium levels are due to that and increasing his vit D will resolve the issue. So please try not to stress yourself by assuming it’s primary hyperparathyroidism and surgery is required.

Please join hyperparathyroidismUKaction4change. There a couple of mums on there whose children have or had hyperparathyroidism. I and my sister have hyperparathyroidism so have experience with it.

Apologies brain fog one of the many symptoms of this horrible disease. The sooner the better your son has surgery as his bones as still growing. The site is primary hyperparathyroidUKaction4change

The gland is a small parathyroid gland. We normally have 4 each as they are so important. One or more of them may need to be removed either because they have an ademona, a benign tumour growing out of them, or the whole gland is enlarged because it has enlarged cells that are making too much parathyroid hormone.