Hyperparathyroid - any consultants suggestions?

[Bea1314]

My GP is referring me to see endycronologist for hyperparathyroidism- the surgery is likely.

Do you have any recommendations for consultants in London? NHS or private?

Any suggestions and experiences of the surgery to remove overactive hyperthyroid glands will be also welcome!!!!

Excuse my spelling....endocrinologist.....

And I meant hyperparathyroid gland.....

Nobody? 😥

I am hypoparathyroid after thyroid surgery.

I didn’t have surgery for that but can just let you know that my thyroid surgery was not painful to recover from at all. I manage it with calcium tablets and is mostly ok to deal with.

I had the surgery about 8 years ago but in Cardiff with David Scott-Coombes. He was excellent.
I can’t recommend my Endocrinologist at all. He was very dismiss of my symptoms and I had a real fight for surgery and eventually went private through my work health insurance.

There used to be a great FB group with recommendations for endos and surgeons. I’ll have a look to see if I can find it.

How did you get diagnosed?

The Facebook group is Hyperparathyroid UK action4change.

My colleague just had hers done with the local NHS person. Was delighted with the results, felt she had had way more symptoms than she realised.

@BestIsWest I had a blood test as i broke a wrist and they checked bone profile, and both calcium and PTH were high. I don't really have any other symptoms of hyperparathyroidism.

I will probably ask to be referred straight to the endo surgeon rather than just endo, as likely to need surgery.

Apparently Hammersmith hospital is very good and I am in NW London.

Many moons ago I was a doctor on a ward for people with hyperparathyroidism. You need both the endo and the surgeon - there will be a treatment pathway. Definitely need the endo given you have broken a bone.

Don't be surprised if you find that you had more symptoms than you thought once your hormone levels are normal!

If you are in NW London the Hammersmith is a big international endocrine centre so you will likely end up there anyway.

Yeah you need the endocrinologist too. There's no such thing as an "endo surgeon", it's either ENT/head+neck and the surgeons only operate on the advice of the medical specialist. Surgeons can't manage medical issues like this.

Thank you so much both.

I was diagnosed with primary hyperparathyroidism last July by my cardiologist (who was treating me for long Covid). He referred me to a private endo Dr Steven Hurel who I definitely recommend!! He works out of London Bridge Hospital (in the Shard) and Harley St. He's also Clinical Director at UCLH so knows his stuff:

thephysiciansclinic.co.uk/phisician/dr-steven-hurel/

He referred me for surgery which I had last Sept. My surgeon was Tom Kurzawinski, who is one of the top surgeons in this field in the UK / internationally and a truly lovely man. I can't recommend him highly enough. I'm a member of the Facebook group mentioned earlier (they have been a huge source of support and information - more wonderful people!) and when I posted my post-surgery photo of my wound, everyone was amazed by how neat and tiny it is. Some people said the best they'd ever seen!

Tom Kurzawinski does intra-surgery blood tests (not all surgeons do this) to make sure there aren't any other problem parathyroid glands lurking before he closes the wound. This is important! He's based at The London Clinic (just off Harley St) as well as Head of Endocrine Surgery at UCLH and Great Ormond St. Dr Hurel and Mr Kurzawinski changed my life!

ultrafasthormones.co.uk/bio/

Please feel free to PM if you need advice or support @Bea1314 Definitely join the Facebook group. Sally who runs it knows more than most endos and GPs and works closely with several leading surgeons specialising in PHPT. The group is amazing and will help you through everything from blood test results to supplements to wound advice. Incredible people!

That's very helpful @HundredMilesAnHour , I may pm you once I see my GP for referral. Thank you!

Probably you've chosen by now but if not and don't mind travelling to Oxford (I have from essex) I saw Shad Khan who was and is amazing. I'm a rare case who has 6 glands, with 4 of them being diseased. I'm awaiting the 4th being operated on this year after a couple of operations. (Don't worry i am a v v rare case). But if you can pay privately he is one if not the best in the UK. Definitely get on the Facebook group hyperparathyriod UK action 4 change as its an amazing resource and Sallie who runs the group is a brilliant guide. Best of luck. Happy to answer any questions of course.

I'm waiting for a firm diagnosis as had calcium and PTH bloods done separately so now GP has given me high dose vit D and will redo bloods soon. Feel awful bedridden. How did everyone who posted here get on and what were the symptoms.

@HasB you need calcium, PTH and vitamin d done from the same blood draw for diagnosis. You need referral to endocrinology who will then refer you for surgery. High calcium makes you feel awful.

highly recommend the fb group listed above - hyperparathyroid acrion 4 change. The patients there will help you.

How are you now? I'm thinking of going with Shad Khan privately but waiting for more bloods end of this month after high dose vit D course