Help! Two parathyroid surgeries but PTH still high!

[Beth35]

Hi everyone!  I've been absent from this site for a while.  I hope everyone is doing well.  I'm still on dialysis and I still hate it.  I've had high PTH levels for a long time.  I've had two surgeries over the past three years and my PTH level is still super high.  My last PTH level was 4200!  It was as high as 5000 but now I'm taking sensipar.  All of my parathyroid glands were removed and my levels didn't drop.  The surgeon doesn't know why and refuses to go in a third time.  My nephrologist doesn't know why either.  I saw an endocrinologist and he said there MUST be some glands in there but nothing lit up in my neck or chest on the parathyroid scan. 

The biggest problems are the fact that my bones are breaking down and I'm in a lot of pain.  And the transplant clinic refuses to give me a kidney until I get my PTH down below 1000. 

I'm so depressed and I'm at a loss as to what is going on.  I'm a single mom to two children.  I'm only 43 years old.  I need a kidney.

Has this happened to anyone else???

[KatieV]

I have not have my parathyroid glands removed, but my doctor was talking about the possibility of removing them.  I was on 60mg of Sensipar and 0.5mcg of Calcitriol a day, yet my PTH level was at 2500. 

Two months ago, he increased my dosage of both as a last-ditch effort to control the PTH.  Due to insurance authorizations, it took 3 weeks to get the increased Sensipar.  On a month of 0.75mg Calcitriol and 1 week of 90mg Sensipar, my PTH was down to 920!  I drew labs this week and am excited to see what my level will be this month.

What is your dosage of Sensipar?  Are you on Calcitriol (activated Vit.D) as well?

[skinnacat]

Wow that's terrible...that number is very high...mine was like 600 and the doctor was freaking out.
U would think they could do something for you since ur in pain and so young...I am 44 and rarely find anyone
around my age on dialysis.
I sure hope someone can help you..I wanted to ask you are you on hemo?? and how long have you been on dialysis??

[Simon Dog]

Interesting trivia: research suggests that Paricalcitrol is more effective than Calcitrol, however, cost and clinic policies is pushing towards prescribing the later.