Hyper parathyroidism

[Seh22]

Has anyone been diagnosed with hyper parathyroidism and have you had the operation to remove the offending glands?

[bantam12]

Yes I have, if you want lots of useful info go to hyperparathyroid.org.uk

[Seh22 in reply to bantam12]

Thanks looks a really useful site

[jade_s]

One of the best sources of info on hyperparathyroidism, from the Norman Parathyroid Center in the US. Surgery is the ONLY solution. "Wait-and-see" basically means "waiting for death".

parathyroid.com/

Especially worth reading about how to select a good surgeon.

parathyroid.com/treatment-s...

[bantam12 in reply to jade_s]

Surgery isn't actually suitable for everyone, hpth can be controlled with medication for those who either can't have or don't want surgery.

[Rebec in reply to bantam12]

I've never heard though that high parathyroid hormones can be controlled by medication.

[bantam12 in reply to Rebec]

The medication is called Cinacalcet and it's very affective in reducing levels. We have had several members on our hpth forum take it and my husband is currently on it as he can't have surgery.

[Rebec in reply to bantam12]

Thanks for the information. No doctor has ever mentioned a medicine for it only talked of operating.

[bantam12 in reply to Rebec]

You wouldn't be offered Cinacalcet unless there were reasons not to have surgery.

[Rebec in reply to jade_s]

Don't think you're waiting for death if you have no operation. Wait and see means have regular checks for the level of the hormones, have bone density scans, and also hopefully you don't develop kidney stones, although even if you do, that's not a death sentence.

[Seh22 in reply to Rebec]

I'm waiting for tests as endocrinologist has already said that I'll have surgery.

[Rebec in reply to Seh22]

Endos as well as surgeons suggest operations. I didn't even have the test (forgot what it's called) because the radiographer told me that they don't always locate them and the best i's on the operating table when the neck is at its most relaxed! Also, my GP told me that it's quite a complicated procedure because of what the neck "is made of"!

Will you be going ahead if the endo will suggest an operation?

[Seh22 in reply to Rebec]

Yes as he said that as I'm only 47 and not post menapausal or even menapausal lol, I might as well as it'll only get worse.

[Seh22 in reply to jade_s]

Thank you for your reply. I don't think I'm quite waiting for death.

[jade_s in reply to Seh22]

Sorry for the dramatics, was trying to make the point that calcium levels won't go down just by waiting, and in the meantime high calcium over time can cause a lot of damage and pain, not just kidney stones. There's no reason not to treat immediately. No need to take my word for it, there's plenty of info and studies online.

Good luck.

[bantam12 in reply to jade_s]

Jade it does depend on what is causing the high calcium, if its primary due to an adenoma then surgery is likely, if it's secondary caused by other issues then surgery is not usually required, diagnosis can be tricky so frequently takes time.

[jade_s in reply to bantam12]

Indeed... I've only really looked into hyperparathyroidism due to a parathyroid tumor... Which is what I was assuming the OP was referring to.

[Lily288 in reply to jade_s]

Jade_5

I totally agree that when diagnosed with hyperparathyroidism that you need surgery and to not wait as it'll just get worse like you said. I know cause my husband was diagnosed with hyperparathyroidism but for him , it was diagnosed too late and the worst happened like you said. The surgery of course is in the neck but I'm sure you will not be operated on by surgeon who' s never done it before. My sister just had her thyroid removed and her surgery had to be similar.... she's now fine. but my husband is not.

[Seh22 in reply to Lily288]

Yes my consultant said that having the op is the best as it'll get worse in time. Sorry to hear about your husband X

[jade_s in reply to Lily288]

I'm also very sorry to hear about your husband!

[Seh22 in reply to jade_s]

Thanks

[t3rr]

Yes, surgery completed three months ago, and feel so much better, lots of issues I had have improved greatly, having been messed around for over a year by the endo I was seeing, had second opinion, following sestamibi and ultrasound tests which confirmed the adenoma, I think I had a brilliant surgeon, minimal scar and one night in hospital. Just make sure you get a good surgeon, who does lots of parathyroidectomies.

[Seh22 in reply to t3rr]

Thanks for your reply . I hope to get it done soon as I've been experiencing extreme tiredness for ages and want to feel better now. Mine only came about through having blood tests as I have been off sick with hypersensitive vasculitus.

[Selby in reply to t3rr]

Hi there,

I'd be interested to share and learn from your experience. I have Primary HyperPTH - have been messed about by useless Endo. I've done research for a good surgeon in UK and it looks as though he's in Birmingham....Mr John Watkinson who runs the Thyroid Clinic. Was he your choice also?

I'm 82 and have now developed Polymyalgia to add insult to injury and have suffered severe pain for more than six weeks. I switched Doc's who is now treating me with steroids - but I still have to go through the system - only a Kidney scan now, and then we'll approach for a private consultation - and hope for treatment on the NHS subsequently.

Any advise or helpful info. would be much appreciated.

Kind regards,

Shirley.

[bantam12 in reply to Selby]

You need to find out if he has lots of experience doing parathyroid ops, many don't.

If you want more pth info visit hyperparathyroid.org.uk we do have a list of surgeons showing the number of ops they have done.

[Selby in reply to bantam12]

Thanks bantam12, I'll do that.

[t3rr in reply to Selby]

I was messed about at first by my endo insisting my blood pressure had to be got down more, and had horrid side effects from the two additional tablets he recommended, changed my GP and new one referred me to Professor Kim, who mainly operates from St Georges Hospital, London and Royal Marsden, have you had a sestamibi and unltrasound scan done to identify the adenoma? Once in his hands everything proceeded smoothly, stayed in hospital overnight as my operation was carried out in the afternoon, actually felt better immediately after the operation.

[Selby in reply to t3rr]

Thanks for sharing - not a dissimilar story eh? The diagnosis for PTH disorder is quite recent but started with Fibro a few years ago. When I joined HealthUnlocked I began to learn of thyroid problems and came to the conclusion after more research that my symptoms better matched with many of those.

A referral to the Endo revealed the Primary HyperPTH probability, confirmed after negative VitD and B12 blood tests. 6 months on, (a supposed 3month apt. later), he referred me for a bone scan (done) and bladder scan - in three weeks - and promised to see me in another 3 months (which I'll guarantee will be 6 months again)!

I've had to educate myself via the internet (and thank goodness for that) because I believe my problem has long been developing - with strange complications emerging to add to my confusion. Awaking during the night with pain in the forearms and pins and needles in my hands preventing me from sleeping properly - less troublesome in the daytime.

Awakening one morning to severe pain with shoulders in a vice-like trap - made no sense to Endo - or GP - they both seemed to disregard both symptoms as unknown to them, with no help offered.

I got the impression by what I learned from America that we were way behind treatment wise - and that maybe my situation is more advanced than my medics were aware - and it feels lonely out there!

Anyway, I've consulted the practice female partner who is very switched on, she immediately ordered a blood test to measure inflammation and provided a 'scrip for Pred. to take immediately afterwards.

I went from my bed to re-potting 62 tomato, and 30 flower plants within 36 hours. At least I'm comfortable now and don't mind waiting for three weeks for the other test - and then my lovely Dr will write to my chosen chap for a private consultation initially - and we'll go from there.

The specialist Thyroid clinic in Birmingham seems appropriate, we live in Lincs, and I haven't read of another in the region. However I'd love to know of anyone who has experience of Mr John Watkinson who heads the unit. He sounds to be very experienced.

Hope this long tale hasn't sent you to sleep! Thanks for listening anyway.

[bantam12 in reply to Selby]

Selby the treatment for hpth is the same in the UK as it is in USA.

[Selby in reply to bantam12]

Yes I discovered that once I'd done my own research - but I'd love to hear from anyone who has experienced the Brum. centre of excellence - because it covers the Midlands region, and I've only heard mention of good surgeons in London and the South.

[bantam12 in reply to Selby]

On our parathyroid forum I don't recall anyone having parathyroid surgery at the Birmingham centre.

[Selby in reply to bantam12]

That's a bit worrying....

[bantam12 in reply to Selby]

Not necessarily, it's just not on our radar, doesn't mean it's not good. I would be interested to hear how you get on there.

[Selby in reply to bantam12]

I'll happily pass on my experience - whatever develops, and thank you for being there to chat with.

[Junep in reply to Selby]

Hi , I can see your post was three years ago so not even sure you’ll get to see this , but just in case ... I have very high levels of calcium in my blood so am waiting for a blood test to confirm this as I’ve only had a hair mineral test that showed it . So I wonder if you see this that you could tell me how you got on ?