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Has anyone got primary hyperparathyroidism?

(29 Posts)
Cindefuckingrella Thu 02-Nov-17 01:07:15

Recently been diagnosed and having a parathyroidectomy soon. Worried and getting cold feet and interested to know other people's experiences of the disease/parathyroidectomy/chosen treatment.

TheaDecker Sat 04-Nov-17 21:41:39

I have had this for a year. I haven't had any treatment and none is on the cards. It has slowly destroyed my health. I haven't even seen a surgeon yet.

corlan Sat 04-Nov-17 23:14:24

I had hyperparathyroidism and had surgery to cure it. Please don't worry about the surgery. There is no long-term medical cure for this disease, so there are many people who are fighting to get surgery but do not fit the guidelines to be eligible. Look at it this way, you are one of the 'lucky' ones because you have been offered surgery!
I found the website really useful in helping me understand the biology of the disease. There is also a Facebook group :- Hyperparathyroid UK Action4Change which I found really useful for learning about other people's experience of the disease.
I hope your surgery goes well and you get the cure you need. smile

Cindefuckingrella Sat 25-Nov-17 00:50:56

Thank you for your replies. I didn't realise anyone had answered me! I thought I'd get a notification or something!
I hadn't realised some people weren't eligible for the surgery. I do feel lucky to have been offered it now and to have got it done so quickly.
I've now had the operation- it has been a week. It went well and recovery has been fine from the actual op.
corlan when did you notice a reduction in your symptoms, if you had any? Did it take a while to feel back to normal? A week post op and I still have the symptoms that took me to my GP in the first place. I know a week is not a long time so I just wondered how long it took other people to feel normal again? I will check out the Facebook page also, thanks for the advice smile

Cindefuckingrella Sat 25-Nov-17 01:01:46

theadecker I hope you get to see a surgeon and get the treatment you need soon flowers

TheaDecker Sat 25-Nov-17 13:21:56

I am glad it went well. smile
I have a scan coming up but no appointment yet to see the surgeon (he didn't turn up to the appointment I'd waited so long for).

Cindefuckingrella Sat 25-Nov-17 13:47:23

theadecker Oh no I can't imagine how I would feel if that had happened to me. I spent all my time counting down the days to the next scan, appointment etc, just anything that got me closer to the end result. Once I'd had the nuclear scan and ultrasound I saw the consultant at his next clinic and he gave me a date for 5 weeks from then. I was so relieved as I thought I might have a long wait. So hopefully things will move quickly after your scans. I've taken corlans advice above and joined the Facebook group she mentioned. There are lots of people on there in various stages of their journey- pre and post op. You might find it helpful and informative if you are not a member already.

Muir23 Sat 25-Nov-17 13:59:21

Following with interest as my husband is about to have this surgery

TheaDecker Sat 25-Nov-17 14:19:53

It's been about 18 months so far. I am only having an ultrasound I think, no mention of a nuclear scan.
Unfortunately I'm not on Facebook!
There doesn't seem to be any other cause of primary hyperparathyroidism other than an adenoma so not sure why it's proving so difficult to get anywhere.

Cindefuckingrella Sat 25-Nov-17 14:30:41

I can't believe how different it can be for everyone. My consultant was quite specific in requesting the two scans in a particular order- sestimibi scan first (that's the nuclear one). That showed 1 adenoma and then the ultrasound afterwards. The first scan helped them do the second and they both showed the same - bottom left tumour- so it gave him a focus for the operation. It might be worth mentioning when you see someone. I think without having the tumour pinpointed it can mean a more exploratory surgery.

Cindefuckingrella Sat 25-Nov-17 14:33:44

muir23 when is your husbands surgery? Has he waited long for it?

Muir23 Sat 25-Nov-17 14:47:29

Surgery is in a week's time. Since the endocrinologist diagnosed the condition he has been waiting 9 months, but had symptoms a lot longer

Muir23 Sat 25-Nov-17 14:48:30

Cindefuckingrella - he had same diagnostic path as you. Has your calcium level gone down to normal since your surgery? What are your symptoms?

Cindefuckingrella Sat 25-Nov-17 18:18:24

Muir23 I went to the gp with jaw pain and numbness and a swollen finger which has since progressed to finger, wrist and foot pain. And since then I've realised I can attribute my tiredness, brain fog and grumpiness to it too. I only had my calcium done yesterday a week post op- I don't know the results yet. They did it just after the op and it was down but still high which I guess is to be expected. My pth has dropped. I'll find out more next week.
When I first went to the gp she luckily took me seriously straight away- she is truly lovely- and ran a load of blood tests. When calcium came back high I got called back for a calcium retest and PTH. At that point I started investigating and found out about the condition- I'd never even heard of a parathyroid before!

whenthestarsturnblue Sun 26-Nov-17 16:46:19

I have just been referred to an endocrinologist with this - high Calcium, high PTH, low vitamin D and phosphates probably hyperparathyroidism. I am slightly terrified as I have had Hodgkins disease and there appears to be only 2 reasons to have consistently high calcium levels.

However on palpitation of my neck, my doctor could not feel an adenoma. However on palpitation of my own neck (which you do get good at after having cancer ;)) I can feel a structure that makes me gag, only on one side. No scan yet as my doctor couldn't feel anything, but it is my understanding that these adenomas are hard to image perfectly let alone palpitate? am I wrong?, on a waiting list now.

Hip Pain, horrible heartburn, general mugginess and a racing heartbeat even on waking up. I am afraid that if it is it, they won't offer surgery? @Theadecker why were you not offered that? or are you waiting to see someone still? I am relatively young, so fit one criteria for surgery but I was wondering if if is it, and they don't operate what the options are. Someone has to take the fecking thing out. I am not going start taking bisphosphonates for life.

My own fear lies in if it is not it then it it is a secondary cancer. I have detected some protein in my urine and for all cancers PTH should be lower as the tumour itself is producing/causing the calcium to be high; but with the exception of some cases of multiple myeloma which also shows protein in the urine.

So sorry I am being a negative here, but you have been seen Cindefuckingrella and there is a 96 to 98% response rate on surgical intervention so feel good and don't be nervous, by all accounts it should change the way you feel remarkably!.

TheaDecker Sun 26-Nov-17 17:21:35

Whenthestarsturnblue, I have high (but not v high) calcium, low phosphates, high PTH. Vit D was low but now normal after months of tablets. High calcium in my urine for a long time. Referred (begrudgingly) to endocrine surgeon by endocrinologist but surgeon didn't turn up, but sent for ultrasound. 1st consultant says calcium is not high enough for surgery but then changed her mind & referred to surgeon. 18 months on & nothing has really happened except my health has deteriorated.

corlan Sun 26-Nov-17 18:20:46

Really glad to hear that your surgery went well Cindefuckingrella.
You asked how long it takes for the symptoms to go. I think it depends on the symptoms. I had bone pain and the surgeon said that the reduction in pain could take up to a year. I think he was right in that - I still have some pain, but at least I know it's not going to keep getting worse.
What are your symptoms? Unfortunately a lot of the symptoms of Hperparathyroidism are similar to Menopause. I still have brain fog, tiredness and memory loss - although I was hoping I'd be cured once my calcium levels went down, turned out to be the menopause!

whenthestarsturnblue Sun 26-Nov-17 18:54:18

Sorry Cindefuckingrella, I didn't realise you had your surgery since original post (I was watching the thread but didn't get alerts on updates, works for AIBU but not here for some reason). I am delighted you are out of it now and one thing is to get through a surgery, regardless of what it is for. Was it a general or a local anaesthetic? I wouldn't worry too much about symptoms for now, but would expect major improvements in 4-6 weeks, but Corlan is probably best placed to advise on that.

The website is helpful but doesn't link to any external research so in those terms can't be taken more seriously than any others though it gets in the top 4 google results.

whenthestarsturnblue Sun 26-Nov-17 18:58:21

Theadecker, I am the same, I have had consistently high calcium but not extremely high, I have only started on vitamin D and iron because that was low also. So that will probably improve. I only recently did the 24 hour urine, so don't know what that result was; but using my own urine dipsticks, have a bit of protein there.

Surgeon didn't show up!? Referred (begrudgingly)? have you seen your GP about ultrasound results and what did they say, is there an enlarged gland present on the ultrasound? From what I have read only Sestamibi scans give a good picture and even then they aren't great as the parathyroid sits behind the thyroid.

I don't know when my next appointment will be, I am hoping early in the new year, will let you know, if you let me know how you get on? Have you a date for anything yet, do you mind me asking are you under the NHS?

TheaDecker Sun 26-Nov-17 19:28:03

I am under the NHS but paid for the first appointment private (utterly desperate). It was a waste of money. Haven't had the ultrasound yet but do have a date. The surgeon had an emergency so couldn't come but they haven't rebooked yet (over a month later).

Yes please update & good luck. Thanks for all the information you have provided. I'll update if I get anywhere with it!

whenthestarsturnblue Sun 26-Nov-17 20:25:59

I am under the HSE in Ireland, Best of luck Thea and hopefully we will have good updates in a few months time!

Skatingmama Sun 26-Nov-17 20:32:29

Hi all, I have this t shirt - 5 years on from surgery, symptoms gone and scar nearly invisible.

If anyone wants surgery and can't get taken seriously please ask gp for referral to a centre of excellence in this area eg Charing Cross hospital was one

Go for somewhere which has a surgeon doing more than 20 parathyroidectomies per year - it is quite a specialist op

All the best everyone flowers

2old2beamum Sun 26-Nov-17 20:53:02

Another one here, had the op 5 years ago. All happened quickly very high calcium and low vitamin D, referral, tests all done and dusted in 6-7 weeks on the NHS. Took a little while to get back to normal but I am old
halo Good luck to you all.

ChunkyPunky Sun 26-Nov-17 20:57:09

My son has. He had radiotherapy to his head and spine when he was 8 to treat a brain tumour. We were told then that he would likely develop thyroid problems as a result. Both his pituitary and thyroid glands were pretty much destroyed by the radiotherapy. He had to have growth hormone injections from when he hit puberty and has been taking thyroxine for the last few years.

He has blood tests every six months and the last lot showed that his calcium levels were elevated. He had an ultrasound with radioactive contrast and then a needle aspirate biopsy. He has multiple nodules on his thyroid and parathyroid glands, which are causing his bones to release too much calcium into his bloodstream. We saw the surgeon this week and he will be having this thyroid and parathyroids removed in late December.

The surgeon was lovely, took time to explain everything and was happy to answer questions. We are very lucky to live in Leeds TH area.

Cindefuckingrella Sun 26-Nov-17 21:09:59

corlan it was sudden onset of joint pain in my hands but more strangely a numb jaw and jaw pain that took me to the gp. I've since developed weakness in my hands, more aches and pains- basically feeling around 90! tiredness, brain fog, memory all tied in too. I've got a 2 yr old (I'm 42) and had put it down to baby brain and having a 6 and 2 yr old to contend with. The GP did say the pains can be part and parcel of being older but said I was probably a bit young - late 40s more common. Luckily she ran blood tests and there was no delay in my diagnosis and no struggle to get the op. I count myself very lucky. I have considered my pains and other symptoms could be unrelated but I hope not! My mum went through menopause quite late so I'm hoping it's not that! I can't really say yet if my tiredness has improved as I'm out of my routine this week recovering from surgery. My joint pain remains however I think my hands feel stronger so that's good. I wasn't told post op to give it x amount of time, but it seems like things happen differently for different people and symptoms etc so I'm just going to look after myself and give it time and feel relieved that at least I can only get better!

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