Parathyroid Surgery - advice please

[Azuresky68]

I would like to know about parathroid surgery as I have an appointment mid November to discuss this. I am pretty anxious. Went to doctors over 2 years ago as I was always so tired. I am 69 , retired with an active lifestyle.
Tiredness only recently linked to my parathyroid when they detected high levels of calcium in my blood. I have had.treatment to remove a kidney stone. Last week I had a bone scan. Any advice about the operation would be great.

Hi Azuresky68 i had surgery for hyperparathyroidism in 2018 - one gland removed. Surgery is the only solution!
Mine went absolutely fine- stayed overnight but back home the next day. Took it easy for a bout a month but to be honest I didn’t have that much discomfort.
I was just very relieved to get my life back!
There is a very helpful group on Facebook- Hyperparathyroid UK Action4Change - lots of useful information - I would definitely recommend joining it. They are very supportive.
Good luck!

@theicemaidenismelting thanks so much for your advice. Did you have general or local anaesthetic?

I was incredibly unwell with hypercalcaemia, palpitations, bone pain etc. I had phenomenal support from
https://www.facebook.com/groups/hyperpara.parathyroiduk/

once I had educated myself, this informed my approach to my GP, local endocrinologist, advocating for scans asap.
Still took me 18 months to be referred to a specialist hospital (Aintree) and at that point, I made the life changing decision to go private with Mr Shad Khan at the New Foscote Hospital in Banbury.He is renowned for his expertise, kindness and understanding of how awful this disease is, and how it is dismissed by so many GPs.
Turned out the 9mm tumour found at my local hospital was actually a giant 3cm adenoma stuck to my thyroid and that I have Hashimotos as well.
I stayed at a local Premier Inn the night before the op, then 2 nights extra as I was very tired.
The actual surgery requires half day in hospital, you are closely monitored before, during surgery through PTH testing to ensure the parathyroid hormone drastically reduces once the tumour is removed, then post-surgery.Then ice cream, cold drinks etc and you need to really take things easy for several weeks.The dressing stays on until it starts to peel off itself.My scar is tiny, and I have my life back.It has taken 8 months for my PTH levels to return to normal levels as I was also very deficient in Vitamin D, and have had to take 3000 iu a day for 8 months.
The key is to find an experienced parathyroid surgeon, do join the facebook group, the wealth of information, support and people's stories is absolutely invaluable.
And the mantra that I kept repeating to get the scans etc done on the NHS was: if my adjusted calcium is high in tandem with a high PTH, then I meet the threshold for further investigations, blood tests, bladder and kidney scans and ultrasound + CT/BIBI scans of my parathyroid glands to locate the adenoma(s).

I had two parathyroid glands removed a couple of years ago, no issues with the surgery, but was kept in hospital for a couple of days until my calcium levels stabilised, so had a lot of blood tests and the worst bruising was on my arms, 😂
The scar is nigh on invisible now, but I did used a silicone tape on it for a few weeks as it was a bit ‘lumpy’, now smooth.
I had a repeat Dexa scan done about 6 months later to check for osteoporosis and was clear.

Thank you all for the invaluable advice so far 💐

Hi.
I had my parathyroidectomy last February at The New Foscote Hospital in Banbury by Shad Khan and was in for half a day. He is a renowned surgeon and the scar is minimal. He also does a 4 gland exploration.
I would also recommend the support page on Facebook that someone else has posted a link for. It's a mine of information and covers all areas relating to the subject from symptoms, operation, recovery and recommended supplements.
I felt so ill prior to the operation and felt well very soon afterwards.
Feel free to ask anything else.

I had my parathyroid surgery at The London Clinic, done by the wonderful Mr Tom Kurzawinski. (I have private medical insurance through my job). I was kept in overnight so roughly in for just under 24 hours.

It was only a few months later that Charles and Kate were both treated for cancer at The London Clinic.Seemed weird to think of them being in the same place with the same facilities as little old normal me.

I’m also in the Facebook group and it was a great source of support at the time.

I had extensive parathyroid surgery almost 20 years ago. They thought that they'd removed 3 1/2 glands (although 2 turned out not to be parathyroid glands but part of my thymus which was in the wrong place!) I was in overnight because of having so many removed but there were no problems.

I found the recovery extremely straightforward and felt more or less back to normal within a few days, although tbf I was only in my 20s at the time! The scar was practically invisible within a few months.

Thanks for the thread OP. I'm currently on the waiting list for a parathyroidectomy. I'm taking Cinacalcet in the meantime and have had a bone scan, which diagnosed osteopenia and a CT scan last week to locate the tumour(s). Still waiting for results from that one.

Hi, I'm still on the waiting list for surgery in Cardiff but feeling quite rough. Can anyone advise how long you had to be off work for, post op?

The FB page recommended is really helpful. I have had a bone scan revealing osteoporosis but I am 69. Scan in January then hopefully surgery in 3 to 6 months. Not looking forward to it but it really needs to be done.

Thanks for your reply. Best of luck! I'm hopefully having my surgery within the next 3 months. It can't come soon enough as I feel so bad.

Let's stay updated and good luck. How bad are your symptoms and how long has your journey been so far? I was only diagnosed in September after years of feeling tired but they couldn't find out the problem

I was off for about a week but obviously it depends on what your job is. Be aware that you can’t drive for a week (you need to be able to turn your head to drive). It was a very straightforward recovery for me.

I'm just at the beginning of this journey.

I'll read the thread again properly again tomorrow

I'm at the opposite end of this journey having had my surgery in February this year.
I feel WONDERFUL and realised how ill and tired I had felt leading up to surgery with no energy and motivation.
I'm retired so can't comment on time off work.
Good luck to anyone awaiting surgery and take comfort and reassurance from me that there is light at the end of the tunnel.

My sister had surgery for parathyroid disease in May this year, the hospital and GP had faffed about with her for 5 years checking her calcium levels and leaving her. She ended up exhausted.

The surgery went so well and she was back to work within a week. She has had absolutely no issues since and feels very well.

Good luck, hope all goes well for you.

I had surgery in the Spire in Cardiff with David Scott-Coombes in 2015. Overnight stay and two weeks off work.
I have a tiny, almost invisible scar. The only issue that I had was that my calcium briefly dropped too low afterwards - a couple of Rennies sorted it out.

My biggest issue was fractures - 11 broken bones in the four years before the op and one since in 2016. I’ve been fine since.

I had a lot of scans because they couldn’t find the tumour but it turned out to be in my thymus.

My current symptoms are frequent nausea, fatigue, a very uncomfortable sensation in my neck, stabbing muscle pains/itching, insomnia and occasional blurred vision. Not sure how much is also menopause related. I'm still at work but it's basically work, rest, eat and (try to) sleep with little else going on in my life at the moment!

I was diagnosed around a year ago by a routine blood test for something else. The doctor was great, immediately picked it up and referred me. Ive had a bone scan which showed osteopenia and the CT scan showed a 1cm mass on 1 parathyroid. I must've had it for a few years. :(

Thanks so much for replying! How are your symptoms?

Hi all the FB group mentioned above is wonderful - I had my surgery in may and am so much better - if you are prepared to travel there are NHS surgeons who have much shorter waiting lists which you can be referred to. I went to Croydon

Oh wow! That's great to know, I'd certainly be happy to travel!

Nausea, aching body, thirsty, up in the night several times, difficulty in sleeping, constipation and above all extreme fatigue and kidney stones. I thought it was partly my age - 69. I am retired but have an active life...walking 3/5 miles 3/5 times a week. I just have to pace myself. Having my nuclear scan in 2 weeks then a follow up appointment. Not sure how long I will have to wait for the op..approx 3 - 6 months. Apparently surgeons are very good in Leeds where I live 🤞