Has anyone out there had a parathyroid problem?

I had surgery to remove my parathyroid glads about 10 year ago unfortunately they couldn't find them so i still have them but wanted to say the surgeon i had Mr McKirdy at Royal Alexandria hospital Paisley was fantastic and i have to show people my scar as it is not noticable unless pointed out.  Hope if you've had the op you're feeling much better, if not and you can travel to Paisley ask to see this man.

Hi siobhan,

I hope you don't mind me asking but I'm having surgery next Monday with Dr palazzo, I'm having the right half of my thyroid removed would you mind telling me a little of how things were recovery, length of stay in hospital, preparation ect, I'm starting to feel a bit nervous! Thanks x

Hi Sarah! I don't mind at all. I only stayed one night in the hospital and didn't have any particular special preparation to do. The food was horrendous so take some snacks for the day after. Afterwards the pain was quite bearable. I've had worse sore throats in the winter. I felt weak and wobbly for a few days after the surgery. The scar very quickly got less obvious and nowadays is nothing to worry about. Don't be scared of the anaesthetic! It really is just like falling asleep. Good luck with your surgery.

Thank you, I've heard Dr palazzo is one of the best so am glad I'm in good hands, and hopefully won't have to wait too long for the results I think it's only a fortnight, I feel a bit more at ease now thank you x

You're very welcome! Please do pop back and let us all know how it went. Good luck with it.

Hi Shirley you have my sympathies, it took them a few years to finally diagnose me as having hyperparathyroidism, i am borderline underactive thryoid, and boderline for having osteoperosis as well but i have over 30 years of having kidney stones.  I hope you've had those scans by now and given some answers.

Thanks Kate. I do not know anyone else who has hyperparathyroidism so was good to hear from you. My doctor said maybe I should have a second opinion but it just happened that my consultant was away and I saw another who said they did not want to operate yet. He reduced my vit D to 1000 but now all my nails are braking leaving me with sore fingers so just worried what my bones are doing!! I go back in June just waiting for my appointment. I get terrible bone pain. No sign of a scan on my glans. I live in Lancashire. I know some of the people on this site are in U.S.A. which seems to have different treatment?

Hi Shirley and Kate. From what I know hyperparathyroidism always leads to osteoporosis eventually.So it came as no surprise when my blood tests showed high cacium levels, that a subsequent bone scan revealed a degree of osteoporosis. I am currently waiting for a parathyroid scan with a view to surgery.    Last week my consultant advised me to take Alendronic acid. Big mistake! Side effects were awful. Nausea, headache etc.. l felt really ill. Might work for some people but beware. Will just wait for result of surgery now before taking anything else

 

Hi gaynor

Have just had blood tests for back pain and X-ray and vitamin D low as shown up which has raised the parathyroid glan now GP wants a dexta X-ray what ever that is I think for bones. Worried sick so much pain ly on bed most of day so lethargic thinking all sorts.

hope you will see this I know it's an old post but just found this forum.

thankyou

Hi Joan. The DEXA scan is painless and will give a T score rating on the density of your bones. Anything below - 2.5 will indicate osteoporosis. If your blood calcium level is raised and you have bone pain, then like me, you probably need a parathyroidectomy. Its frustrating because the medical profession has a very laid back attitude to this problem and I am having to push hard to get the surgery done. Put simply, your bonesneed calcium and the parathyroid tumour is preventing it getting there. I take ibuprofen for the bone pain. Only surgery will hopefully make a difference. Dont be fobbed off Joan. Best wishes

I would be petrified of an op, please no I am the biggest coward found do anything to me endoscopy MRI  scans but don't put me to sleep.

Thanks

Hi Shirley! I live in Norfolk Uk and have just been diagnosed with Primary Hyperparathyroidism last week. I saw a professor in Norwich. I am due to have surgery as I am under 45 yrs old and I have multiple kidney stones in both kidneys. A couple of them decided to get stuck whilst I was away in Greece on holiday; that was the start of being diagnosed. I have been told my Vit D is low and they want to start me on supplements before the op. I am worried as I have heard this may raise my calcium which is already high!! How are you doing now? Angela. 

Hi Angela. I had a phone call yesterday asking me to go into hospital on Monday for my operation, at last! My pre op has run out so they are doing that on the day. They had a cancellation.

How are you feeling now?

Shirley

Hi Shirley! Oh that's great news! Fingers crossed for you! It will be so great for you to get sorted out and on the road to recovery!!

I am feeling absolutely fine now! My scar is minimal, I feel great, calcium is back to normal too. I just take the odd vit D when I remember ( which isn't often!).

Keep me posted on how you get on!

Best of luck

Angie x

Hi

I know this is an old post but I was just wondering if you had any advice for me? I was diagnosed with hyperparathyroidism about 12 months ago. I was given colicalciferol to take each week which I have always taken. 6 months later a DEXA scan showed a T score of -2.5 in the spine and osteopenia in the femur. I started Alendronic Acid 6months ago and have suffered bone pain and weight gain since. I am told surgery isnt an option but from reading some comments it seems to be offered to some?

Hi Donna

I'm no expert but I do know that if you have a definate diagnosis of hyperparathyroidism, surgery is your ONLY option.Taking Alendronic acid and any form of vit D will do nothing until after surgery is performed. It seems like you are heading towards Osteoporosis. Your bad parathyroid is stopping calcium getting to your bones ! I dont understand the comment surgery is not an option.... I'ts totally necessary. If I were you I would push to be referred to a suitable surgeon asap. Don't take no for an answer.It isn't going to get any better otherwise. 

Hi Gaynor

Thanks for that. I thought as much but when I asked the endocrinologist he said it was a last resort therefore I have kept plodding on. I have an appointment in a couple of months and will push for this. I wonder why they are so reluctant? Thanks again for your comments. 

Hi Donna

I hope you can get something sorted soon. Best wishes

Hi Donna.

It took 3 years to get my operation. I feel so much better now. I was put on vit d in the begining because it was so low. I don't know why it took so long. My calcium and pth is now in the normal range but I'm still getting head flushing so am getting some more tests done.

Shirley

Hi Gaynor

I saw my GP  to discuss surgery with him rather than wait two months for Consultant appointment. He says surgery would not be offered until my calcium goes above 3. It is currently 2.8. I dont understand why something needs to get worse before it is made better? has anyone had the same problem?

My calcium level was 2.76 when the surgeon said it needed to be done soon. Keep at it Donna. You will get there,but its a frustrating process I know. Trouble is most GPs dont have any knowledge or understanding of this problem. AND THE SURGEON TOLD ME THAT !

Thanks Gaynor.I will do. GP said the thyroid gland would have to be removed, huge scar and possibly thyroxine for life. was this the same for you?