Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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NVBobby 02/16/2013

Hello
Has anyone had problems with high PTH???
I've known of my PKD since 2001
I'm 56 mow and my PTH is high..120
Will bew seeing Neoph this week. I know he will be adding a new drug to lower the PTH..

Thanks
Bobby

deleted_user 02/16/2013

doubt your doctor will add another med for the high PTH. he/she may want some test done.
one problem with high PTH is it may elevate your calcium
I had this condition and it turned out to be a non-malignant tumor. because of the elevated calcium I had surgery which was a day in the park. easiest surgery ever and not only did it lower my calcium to normal levels, my potassium had been elevating (this was post transplant) and it too went back to normal. this surprised both the nephrologist and the surgeon but it was welcome to me.

CHeatherS 02/16/2013

Yes, I had pretty high PTH and was put on a synthetic Vit D to trick the parathyroid into settling down. My nephrologist didn't quite agree with me, but I thought it really made a difference with fatigue! I would have to look back at my records to see that the number was, but I believe it was a lot higher than that.

NVBobby 02/17/2013

Thank you both for your input
I will post after I see my nephrologist on wed.
Thanks again

mchau 02/18/2013

I also have very high PTH...much higher >400. Doctor has precribed a medicine for the same but it's still pretty high. Doc. says its normal to have high PTH with PKD, just the balance in minerals need to be maintained through supplements.

NVBobby 02/20/2013

Hello all
Got back from nephrologist today.
He put me on Zemplar to lower my PTH..
He also saw my ultrasound and my kidneys are 22 cm..pretty big.but creatinine levels are 1.62
Thanks for listening to my woes

Bobby

CHeatherS 02/22/2013

There ya go, yes, it was zemplar that I took as well. GREAT creatinine.... take care!

NVBobby 02/25/2013

Thanks for your upbeat attitude..:::)))))))
It's greatly appreciated

Bobby

deleted_user 02/25/2013

My doc says high PTH is common for PKD patients. Mine has been high for years, but until it had a giant flag on it no one paid attention. But he had been watching it. It got realy bad after my doubpe nephrectomy. It is stil high, but not like it was. They put something in my dialysate bag. I'm switching to PD next week... have to remember to ask about this....
Remember don't panic when your blood values come back all weird. If you kidney function is way off, the rest of your body may be off too. And the box of chocolates continues... with PKD you never know what you're going to get.

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