Hyperparathyroidism

[KimRJDB]

Hi, anyone here been diagnosed with Hyperparathyroidism?

[bantam12]

Yes I had it a few years ago, had surgery so all sorted.

[KimRJDB in reply to bantam12]

Great! I’m awaiting confirmation of whether I’m primary secondary or tertiary. Feeling quite poorly 🤒

[bantam12 in reply to KimRJDB]

Good luck, diagnosis can be quite a long process and you need the right Drs, someone experienced in Hpth.

[KimRJDB in reply to bantam12]

Thanks! I’ve paid to see a private endocrinologist. He’s been very understanding and thorough. I struggled massively with the NHS.

[bantam12 in reply to KimRJDB]

I had to pay privately and it started off well but after many months and tests she still wouldn’t play ball and actually admit it was hpth, she reluctantly referred me on to the surgeon and he was furious she hadn’t sent me to him sooner !

[KimRJDB in reply to bantam12]

That’s appalling but I feel your trauma because I’ve experienced the same. I went straight to the surgeon privately and he has been far more helpful than my GP.

[t3rr in reply to KimRJDB]

I had exactly the same experience as Bantam12... all dragged on with nhs, then new gp sent me for a second opinion and private surgeon did the necessary! Good luck

[SlowDragon Administrator]

Helpful website here

parathyroid.com

[KimRJDB in reply to SlowDragon]

Thanks! 👍🏼

[Hedgeree]

Hi KimRJDB,

Another useful site

parathyroiduk.org/hyperpara...

Though I struggle to do links sorry! Sorted now 🥴

[Spangle15]

Yes I have, mine was also a long journey. I was originally told it was because of low vitamin D, even though that had been well within range for a while. I was a bit of anomaly because my calcium was never high, only my pth. I saw an endocrinologist privately, he sent me for some scans, CT and a nuclear scan of some sort I can't remember the details. They found nothing but then he referred me to the surgeon for a second opinion, he went with me to have an ultrasound which was when they found a tumour. I had surgery and they actually found 2 pth tumours when they operated! Unfortunately I am still having calcium issues as mine keeps dropping below range but my pth is high. The endo thinks the pth is high because calcium is low. It is all a bit weird. I was thinking about seeing another endo who knows about pth, would you recommend the one you have seen privately?

[bantam12 in reply to Spangle15]

It sounds like you may have Secondary Hpth where Calcium is low and parathyroids are over producing to try and fix it. Can be due to another cause such as kidney disease or dietary where you aren’t absorbing enough calcium.

parathyroid.com/secondary-h...

[Spangle15 in reply to bantam12]

Thank you so much. I need to research it more because that website makes it sound like you need surgery for secondary hpth but I would hope sorting the problem which I assume is an absorption issue because I don't have any of the other things, would sort the problem.

[bantam12 in reply to Spangle15]

My late husband had secondary hpth due to kidney failure so that wasn’t fixable but he took a drug called Cinacalcet which lowers parathyroid levels. We ran a PTH forum for some years so I know how difficult it can be to get a diagnosis especially when symptoms and results aren’t typical, many (most) Drs don’t have experience of diagnosing or treating parathyroid problems so a huge number of people are left untreated !

I hope you can get the right answers soon, good luck !

[Spangle15 in reply to bantam12]

Thank you. I know you aren't allowed to put names here, but I don't suppose there is any doctor you would recommend that is knowledgeable? I already have low bone density and I don't want it getting any worse. If you do, would you be able to DM me. Thank you so much.

[bantam12 in reply to Spangle15]

I’m afraid I can’t recommend a Dr, certainly wouldn’t recommend the one I saw as she was pretty useless ! We used to have a list on the forum but it’s no longer available and would be out of date anyway.

I think the only thing to do is search Drs and call their secretaries to find out if they specialise in complicated parathyroid issues.

[helvella Administrator Thyroid UK in reply to bantam12]

bantam12,

We have never had a list on the forum. It has always been against our guidelines (since they were first written) to avoid identifying individual doctors in terms of recommendation or criticism.

[Hedgeree in reply to helvella]

Helvella,

I think Bantam12 is referring to a list on the PTH forum that they ran not the ThyroidUK one! ☺

[helvella Administrator Thyroid UK in reply to Hedgeree]

Ah! My mistake.

[bantam12 in reply to helvella]

No the list was on my PTH forum which I had talked about with Spangle.

[Spangle15 in reply to bantam12]

Ok, thank you.

[KimRJDB in reply to Spangle15]

Well so far yes I would but will reserve judgement until I got back for my diagnosis. His name is <redacted doctor name> and he is the endo/diabetes consultant at Durham and Darlington NHS trust but also with Spire Healthcare at Washington.

[KimRJDB]

That was my thoughts too and the 24hrs urine test will confirm. My consultant has written to me to say he is concerned it is primary because the level did not improve with high strength vit D. We shall see.

[Spangle15 in reply to KimRJDB]

Good luck, I hope you get your answers soon.

[Badmintonteresas]

Hello yes I have had hyperparathyroidism a year ago. I had two parathyroid removed. I had a private operation as the NHS didn’t recognise the disease… I actually diagnosed myself after many months of feeling awful and following an abnormal calcium blood test.

Anything else you want to know?

[KimRJDB in reply to Badmintonteresas]

Oh my goodness this sounds so familiar. I have had soooooo many blood tests and sooo many months have passed by and I feel utterly retched. I’ve spent hours pouring over my results and cross referencing with nhs and nice website information and I too have deduced I have Hyperparathyroidism which has since been confirmed by a private consultant and I’m now awaiting results to establish why and inform a treatment plan. Although I’m sorry so many are suffering and have suffered I feel less alone with it now so thank you for sharing.

[Badmintonteresas]

Refer yourself to an experienced surgeon that’s what I did. Lovely surgeon who works in Oxford and Banbury If you live near you could get NHS referral. I had to travel because didn’t live near. There is a great forum which gives all advice you need Hyperparathyroidism action for change uk try and join its worth it so informative.