Hi I have been yo-yoing in and out of A&E with abdominal pain, vomiting and urine frequency. After 3 different curses of antibiotics and a few painful gynae investigations my GP has picked up on 2 blood tests from A&E with calcium levels over 3 and now a high PTH, 4 month wait for endo and I feel awful.....any advice?
Yes - with Ca over 3 you are an emergency. Keep going to A&E when you are really unwell - they will get your calcium level down and may refer you directly to the surgeon.
Second - read everything at parathyroid.com which is the w website of the leading US centre for parathyroid disorders. The information there is nothing short of amazing.
Third - join the support group on Facebook. Called - Hyperparathyroidism UK Action4change which has loads of info and provides plenty of support. I am on that site under the name Lesley Fielding
Fourth - don't let your GP send you to the local endocrinologist before checking the recommended doctors on Hyperparathyroidism UK - if she has already referred you to someone, then you are entitled to say YOU will pick the consultant and the hospital and you'd like to be referred to whoever your research shows is best. There are good endocrinology centres at the Radcliffe in Oxford, the Queen Elizabeth Hospital Birmingham, and the Hammersmith Hospital London.
Hyperparathyroidism is an uncommon endocrine disorder and until it happens to you you have no idea how much an ignorant endo can screw up your route to the operation. A bad endocrinologist is not worth having.
Finally - I don't know where you are but Hyperparathyroind UK will advise on doctors in your area. If you can get to London then Fausto Palazzo at the Hammersmith Hospital in London is a surgeon and the national leader in hyperparathyroid operations - he sees patients directly and does all the tests - that way you don't need the endo. I'd imagine with a Ca over 3 he would see you pretty quickly - but again Hyperparathyroid UK will know more.
Good luck. 🤗
Magnesium often helps. It aids your body to use the calcium better, stopping some of the symptoms. Hopefully you get operated on soon after your endo appointment. Parathyroid adenoma is awful to cope with. Oh, ginkho biloba also helps a fair bit, if you are also getting brain fog.
Thanks for that I will give it a try, I'm very grateful that my gp investigated the abnormal bloods that everyone else chose to ignore, I have a gynae follow up first and I was really considering a hysterectomy to sort out my problems but I think finding a fibroid was just incidental
I also came close to a hysterectomy because of problems caused by a parathyroid adenoma. It is incredible how many symptos that it can cause!
Contact Hyperparathyroidism uk Action4Change
Read everything on parathyroid.com
I've written you a longer message but it's still waiting to be moderated.
Best wishes
I am already on there Eleanor, I also had my op 5 years ago.