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Hyperparathyroidism anyone?

(25 Posts)
Ledkr Thu 02-May-13 14:13:12

I've just been told I need surgery and despite it being common I can't find anyone who knows about it.

Ledkr Fri 03-May-13 07:56:59

Bumping but it clearly isn't "common" amongst vipers grin

crabb Fri 03-May-13 10:03:29

Hi Ledkr, I can help a bit. I had surgery for a parathyroid adenoma 3 years ago.

My history was that I had hypercalcaemia leading to multiple bouts of kidney stones (5 over 10 years or so). Hyperparathyroidism is often the cause behind those symptoms, but my parathyroid hormone levels were normal for ages. Eventually a blood test showed raised parathormone, and a scan found a parathyroid adenoma, which is benign apart from mucking up your calcium levels.

I had it removed surgically (the whole gland, as they are tiny, and there are four so you can certainly lose one) under general anaesthetic. My scar is about 5cm long, and sits about 3 cm above my collar bone to one side of the Adam's apple (and disappears in the fat folds of my neck blush).

The surgery was straightforward for me with no complications, and I only had a couple of days in hospital. Calcium levels are now normal, and no more bouts of calcium-based kidney stones - yay! (But have now developed urate stones, thankfully which can be dissolved by medication).

2old2beamum Fri 03-May-13 13:40:43

I had surgery for hyperparathyroidism 2 months ago. I like crab had an adenoma removed and I was just a day case.Tiny scar.

I felt terrible prior to this tired, grumpy, ached ,piddled for England and a myriad of other complaints. Basically a miserable old bitch.

Post op it took a little while to find my old self but am now full of life and have actually done some springcleaning.

When are you due to have surgery?
Good luck, it is very easily fixed

crabb Fri 03-May-13 14:41:00

I was going to say, there is minimally invasive way to do the surgery, which it sounds like 2old2beamum had, leaving only a tiny scar. My doctor (old fashioned guy!) didn't offer that procedure.

Were either of you told that the average hyper parathyroid patient is female, with "stones, moans, bones and groans"?

Ledkr Fri 03-May-13 16:21:11

Yes I was told that. Cheeky fuckers grin to be fair though I am soooooooo grumpy I'm surprised my family put up with me.
They said my leveks weren't high enough to cause symptoms so I'm worried now that it won't be the cure I'm hoping for.
Anyone else told this?
I'm tired all the time and very short tempered.

BestIsWest Fri 03-May-13 21:06:12

Me too <waves at 2old>. I'm on the waiting list for surgery.

BestIsWest Fri 03-May-13 21:09:48

Ledkr, they've told me the same thing about levels not being high enough to cause symptoms. I think that's bollocks.

WouldBeHarrietVane Fri 03-May-13 21:23:24

Message withdrawn at poster's request.

Ledkr Fri 03-May-13 21:26:09

Oh that's good to hear. In desperate to get my life back I'm low moody and so tired.
Do you get achey joints in bed?
I am also hanging onto two stone of baby weight and not one diet has shifted it. It could be due to lack if exercise though.

Ledkr Fri 03-May-13 21:32:24

I'm in cheltenham. The endicrinologist did sau the surgeon who will do bit is in Gloucester and very experienced but I will check.
We are a family of nurses and I had breast cancer at 26 and was very proactive in getting the right treatment. I ended up at the Marsden.
Good advice though not to take it too lightly.

BestIsWest Fri 03-May-13 21:33:04

I am convinced it's why I can't lose weight too, at least 3 stone overweight despite good diet and exercise. I have the aching legs and feet and indigestion and osteopenia. I broke 4 bones in one fall 18 months ago. Parathyroid.com is good for a long list of symptoms.

Ledkr Fri 03-May-13 21:49:09

His wouldn't it be nice. I've all but given up really. I've tried everything even pushed myself to exercise but nothing.
This week I've not eaten carbs sugar or fat and lost zilch. Very frustrated.
I ache so much at night I can barely sleep.
I've even thought I may have me. Sometimes I get shooting pains in my leg that drives me mad.
It's so nice to speak to other people.

Ledkr Fri 03-May-13 22:01:54

Crikey that sites a bit scary.

WouldBeHarrietVane Fri 03-May-13 22:12:19

Message withdrawn at poster's request.

BestIsWest Fri 03-May-13 22:19:09

I haven't had kidney, heart or blood pressure problems but I've had most of the others. They think I have had it for a long time though.

It is nice to speak to others who have it. I was just relieved initially to have a diagnosis as I thought there was something seriously wrong with me. I have no idea how long the waiting list for surgery is though where I am.

Ledkr Fri 03-May-13 22:26:56

Told me around two to three months.
The hard bit for me is working.
I'm part time and have always been a worker but its such a push to go.
Sometimes I wake in the early hours feeling panicky about the day ahead.
I've had gallstone attacks since I was pregnant two yrs ago is that a symptom I wonder.

Ledkr Fri 03-May-13 22:27:23

I'm rarely up past ten at night

WouldBeHarrietVane Fri 03-May-13 22:38:57

Message withdrawn at poster's request.

BestIsWest Fri 03-May-13 22:41:47

I know how you feel about working, this is exactly how I felt, such an effort, just cut down to part time working as I couldn't handle full time anymore. I am a bit older than you though (50). Worth asking about the Gallstone attacks in case there is a link. I assume you must have a toddler as well which must make it extra hard.

Ledkr Fri 03-May-13 22:52:18

Yes a non sleeper too! Ill wait for my appointment then check him out.
At least we can have a bit of sick time with the op.
With work its not just physical either I just can't concentrate or apply myself and lack motivation which is the first time in my entire career.

2old2beamum Fri 03-May-13 23:11:04

Just thought I would add a few more of my symptoms.
Vitamin D in my boots
Dreadful memory
Raised blood pressure
Thinning hair
Nausea
Constipation (but didn't realise it)
I will be totally honest I felt like death and couldn't function!.

I am MUCH older than you but I have 2 children with complex needs and I really struggled to cope so you have my sympathy

I was very lucky I saw the surgeon and only waited about 4 weeks for surgery
Really hope you get sorted soon and your sun will shine again

BestIsWest Fri 03-May-13 23:27:08

2old, I am so glad you are feeling better!

Ledkr Sat 04-May-13 08:08:17

Another sleep less night due to baby and my painful hips. I wonder if its a symptom or something else?

BestIsWest Sat 04-May-13 19:52:34

How are you now ledkr? Painful hips here too. I think it is a vicious circle though, feel too crap to exercise because your joints ache, gain weight, that makes your joints worse, still feel too crap to exercise, gain more weight etc.

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