A Long Shot: Hyperparathyroidism

[Darty3]

I appreciate that this site is for thyroid issues but there is no community for parathyroid problems.

So my long shot is: is there anybody on here who has experience of being hyperparathyroid?

If so please PM me, many thanks.

[SlowDragon Administrator]

Why do you suspect hyperparathyroidism?

Have you had high calcium results

Are you supplementing vitamin D ?

Had parathyroids testing?

[Darty3 in reply to SlowDragon]

Yes 3 sets of results with elevated calcium and parathyroid. Diagnosed as hyperparathyroid. Taking oral spray vitamin D.

Also had 2 cancerous lumps in breast removed in 2003 and goitre and cancer of thyroid in 2004. So a bit prone to lumps!

[SlowDragon Administrator in reply to Darty3]

How much vitamin D spray are you taking

Are you also taking magnesium and vitamin K2 mk7?

What was latest vitamin D result

Helpful app for diagnosing hyper parathyroid

calciumpro.com

App built by Parathyroid centre

Masses of information on here

parathyroid.com

[Darty3 in reply to SlowDragon]

Thanks for the app site, had found the other site.

Taking BetterYou vit D 3000

Last test shifted from bottom of range to three parts up.

I think my problem now is to find an experienced parathyroid surgeon.

Having had a thyroidectomy they never gave me a map as to where they put the parathyroids!!

There are some horror stories out there about inexperienced surgeons swimming around looking for them for UpTo 8 hours!

Thanks everybody for your responses.

[SlowDragon Administrator in reply to Darty3]

Taking vitamin D supplements will naturally raise calcium levels. That’s why it’s recommended to also take vitamin K2 mk7 as this help direct excess calcium to bones

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Parbrook in reply to Darty3]

If your calcium and pth are high then taking vitd will just increase them more. I had hpth a few years back and surgery to cure it.

[Darty3 in reply to Parbrook]

Where did you have the operation? It appears that in USA there is one specialist centre and their ops. only take 20 mins.

Over here the specialist are Imperial College NHS Trust in London. But waiting for a scan which they won't do because of Covid.

Taking vitamin D because reading low and it cured sleeping sickness!

Taking magnesium as it helps the constipation.

Will just have to endure symptoms until the virus is more controlled.

[Parbrook in reply to Darty3]

I had my surgery in Bristol, a very experienced surgeon. Speed of the surgery doesn't mean its good surgery, when we ran a hyperparathyroid forum we had several members who travelled to the " specialist centre" for speedy ops and actually when they returned to the UK had to undergo further surgery because adenomas had been missed ! My surgery took several hours because I had previously had thyroid surgery but at least I know it was done well and nothing was missed.

The reason your vitd is low is because its a protective measure to try and reduce your calcium absorption so taking supplements is just adding fuel to the fire !

[t3rr]

yes, I have had hyperparathyroidism...can't remember how to private message you, but pleased to help if I can, if you private message me, should pick it up

[Vps1980 in reply to t3rr]

Does anyone know if certain medications can mess with blood test results? I take cinnazirine which is an antihistamine but also a calcium channel blocker xx