To ask has anyone else had a raised PTH/hyperparathyroidism

[HarriwithanI]

After a long wait I’ve a telephone appointment 31st with endocrinologist. My calcium levels have gone back to normal but have a raised PTH.

Have an appointment Monday with ENT due to raised glands for over 3 months and intermittent sore throat/losing voice. Can they do anything for that?

Sorry for posting here, just fed up of feeling physically and mentally unwell :(

Yes. I found out incidentally. I was having thyroid issues and was sent for a scan. It showed my thyroid was normal but that I had a small growth on one of my parathyroid glands. I had my PTH tested, which was raised. GP referred me to the hospital but my referral was declined. They don't want to see me unless my calcium is also raised apparently.

I've been told to just take vit d and get tested every 6 months 🫤 Nice guidelines say that PTH shouldn't routinely be tested in secondary care so I think I may be being fobbed off.

It's such a hard thing to get info about because it seems to be quite a complex disease and there seems to be so much disagreement amongst professionals on whether to treat if calcium levels are normal.

There is a very active Facebook group called parathyroid UK. It is full of people who know quite a bit more than I do!

@Icannoteven I've just joined that group thank you, I’m a HCP and don’t even know anything about it nor my colleagues but we work in emergency care.

That’s absolutely shocking to have your referral not accepted! I think there’s a lack of endocrinologists (well where I live there is) which doesn’t help!

Hey, im currently on this roller coaster.

A year ago i had my first blood test which showed raised calcium.

Then low vit d, the high PTH

Been fobbed off. Had last blood tests about 3 months ago and only received a letter this morning telling me that although vit d has improved nothing else has and i need to do a 24 urine sample.

Looking at it online i now understand that ive been suffering with god awful anand depression which this is more than likely the cause.

@Muddlebubble I’m so so sorry you’re going through this too - I had a breakdown early summer and only then through my bloods was this connection made.
I joined the suggested fb group above and they’ve been a massive help. You have my sympathy as this is horrible to live with, it’s so hard to explain but it does take over your life I feel personally.
Im hoping your area has a better endocrinologist than I had - mine fobbed me off, I’ve requested to see a surgeon that specialises instead.
Sending hugs x

Mine has been utter rubbish, i said to her my joints are hurting and she said thats odd maybe see the doctor as its a separate issue. Anyway they took my blood and before even seeing it said we will see you again in 6 months.
Until i got this letter.

About 3 years ago i had a blood test and they said my calcium was hight vit d was low, did nothing so its been a while.