Hi Im new, diagnosed with hyperparathyroidism

[julesmarg]

Hi, Im new here. From the South West UK, been recently diagnosed with Primary Hyperparathyroidism and awaiting a neck scan this Wed, plus Consultant has asked ENT at another hospital to put me on their surgery list. I have multiple symptoms although my calcium level has never been above 3, it fluctuates between high normal and 2.89. I have been signed off work as I cannot think properly, concentration is very low and have chronic fatigue, nausea, gastro problems, bone pain and muscle aches, Vit D deficiency. I was already suffering with depression and this has got very much worse. I am finding getting support and help from GP and/or friends and family very difficult. Being at home a lot is awful, I miss work and company and my latest attempt to go out of the house for an hour ended up being cut short as I felt so unwell after 20 mins. I am so fatigued, all I want to do is sleep. I dont think surgery will happen until Jan/Feb at the earliest if I am lucky. Anyone else suffering out there?

[bantam12]

I had surgery a few years back. Which hospital are you at ? It's vital you have a surgeon who is experienced in parathyroid surgery. If you are near Southmead Hospital in Bristol I can highly recommend a surgeon.

We have lots of info on our forum hyperparathyroid.org.uk

[julesmarg in reply to bantam12]

Thanks, I am seeing consultant in Cheltenham but she has referred me to surgeons in ENT in Gloucester who have huge waiting lists. I wouldn't mind travelling to Southmead. Not sure how it works if Im already in the system at one hospital and having tests etc there, I dont want to go back to the beginning at another hospital. I just want to get this over and back to work!. Im booked in for an IV infusion of Pamidrone at Gloucester hosp later in month to try to help symptoms. who is the southmead surgeon? I may well make enquiries if the waiting list is more than 6 months long - although Southmeads lists are similar. But I see your point about having a good surgeon, I have yet to meet mine.

[bantam12 in reply to julesmarg]

My Endo was in Bristol but I saw 2 surgeons, one at RUH who I dismissed because they weren't really interested and I then saw JM at Southmead. I think I waited over 6 months for my op but it's probably much the same everywhere.

[julesmarg in reply to bantam12]

thanks for info, I think i will be waiting about the same, maybe more. I will be asking glos surgeon when i meet how many para ops a year he does. Know his name but not looked for info yet on him. lot of waiting around in between sleeping on this one! I've used parathyroid site, good info on there. Dr and consultant prescribed vit d but i not taking them yet, don't want worse cal level, will take after surgery. A pharmacist advised me as warning on tab instructions not to take if calcium raised. I only slightly deficient. Any thoughts? Thx

[Welshmummy999]

ME!

Recently diagnosed and got the wrong end of the stick when Drs surgery said I wasn’t urgent and would get a letter through. 3 weeks to this date, letter arrived saying there is a 3 month waiting list. I so want to get back to normal. Working is a nightmare as I am tired 24/7 and want to stop the carbimazole tablets. I have read good things about the RAI and thought I would have that? Staying on carbimazole is not an option I am willing to take. Feeling sick all the time and generally unwell, worst thing these tablets for me.

[ITYFIALMCTT in reply to Welshmummy999]

Hyperparathyroidism is a very different kettle of fish to hyperthyroidism. It's hyperthyroidism that is typically treated with carbimazole or RAI.

If your diagnosis is hyperthyroidism, maybe make your own post and ask for advice from other members with hyperthyroidism as it's not easy to see in the comments of someone else's post.

[Welshmummy999]

Apologies I thought I had posted in hyperthyroidism. New to this and was looking for advice.