PTH level

[KidneyBham]

Anyone experiencing high PTH level and if so what is your transplant team saying about treatment, my calcium level is good. Just concerned about my PTH, don’t want to have surgery

[ArsenalFan]

I take Calcitriol .25 mcg capsules, Mon-Wed-Fri.

I was as high as 285 after Transplant 6/30/2013, now vary from 74 to 112

[KidneyBham in reply to ArsenalFan]

That’s awesome, how long did it take to drop after you started the meds, I have been taking cinacalcet for about 2 months, my calcium drop back to normal but my PTH went up.

[Davidkidney]

My PTH took over a year after my kidney transplant to come down to near normal levels. My calcium level is still a little above normal. There is a drug called Cinacalcet to lower PTH, I took it during dialysis, and after my transplant when my blood calcium became too high. The doctors did hint early on I might be better off having a parathyroidectomy, but I've been reluctant to have the operation.

[KidneyBham in reply to Davidkidney]

They put me back on Cinacalcet about 2 months ago, my calcium level is 9 which is good but the PTH level is still high, they said I might need to see an endocrinologist and possibly have surgery but like you I’m not trying to do that. If you don’t mind me asking, what is your PTH level?

[Davidkidney in reply to KidneyBham]

My PTH level was just 14 ng/l last time it was checked, my calcium level is still above normal at 11.2, my doctors don't seem that concerned though.

[KidneyBham in reply to Davidkidney]

That’s awesome

[Hidden]

I have had a high PTH level on and off for years. I had an ultrasound to check for tumors and everything looked good. Recently, my PTH level was high (200's) and I was put on .25 of calcitriol daily. Calcitriol caused my calcium to elevate to 12 and nephrology cut down calcitriol to Mon, Wed and Fri. My calcium level decreased, but my PTH went up slightly. Nephrology left it at this level and I go back in 3 months for labs. Parathyroid surgery is very risky and tedious. It is really difficult to take out the tiny parathyroid glands. Nephrology doesn't want to perform surgery unless there is no other choice.

[KidneyBham in reply to Hidden]

Great advice, I’m not looking at surgery, just going to pray for a decrease in that number like I always pray and God changes things.

[Lionkin]

Hello KidneyBham, Prior to the transplant my PTH was 430, it really bothered me as my GFR was around < 12, So taking some of these medications like Calcitriol were in question as they can cause further reduction in gfr, also these medications need to be taken only when crcl (creatinine clearance )was certain level. Most important was that my Bone Density was normal, because high PTH pulls calcium from the bones into the bloodstream. My Transplant team said don't even look at the PTH numbers until more than 1 year as the new kidney is in a constant corrective mode. Recently I measured my PTH it is 77 ( I was in disbelief) & Redid my bone density it is holding out good. Removal of PTH glands is not a life time guaranty as the PTH glands can grow again. Also I have read some articles that mention of a PTH removal decision flow chart which I remember even suggested that it is often PTH > 400 that cause bone issues. ( if I find it I will post it).. Good Luck

[KidneyBham in reply to Lionkin]

Hi Lionkin, I’m two years out and this past month lab, mine went from 300 to 400, it was going down because I’ve been on cinacalcet for about 2 months, calcium level is great, I’m wondering if the lab report was wrong, I’ll wait until after this month labs b4 I look for an endocrinologist.

[Lionkin in reply to KidneyBham]

Hello KidneyBham, I use to doubt my PTH labs too, but PTH is very dynamic - I remember prior to the transplant, once I got a reading to 481, after 2 weeks I was 369, made my head spin - what is going on... it turns out that PTH numbers are very dynamic specially when they are elevated.... typically in my view , endo. should help...but keep your transplant team in loop, Are your gfr numbers constant (say for last 3 lab instances).I was also told as long as Calcium is below 10, do not worry.

[KidneyBham in reply to Lionkin]

Yes everything good except that PTH

[Jennypenny89]

Hey!! I'm 4 years post transplant my PTH level is 39.4, I had a partial parathyroidectomy 2 years prior to my transplant. I was very stubborn and didn't take the calcium pills as directed so easiest way to fix for me was to just have the surgery. That was probably the worst decision I made. I was told that i would have hungry bone syndrome after the surgery but i didn't know the extremeness of hungry bones... for calcium. I was in the hospital for recovery for 2 weeks because my calcium would not get higher, even with all day long iv's of calcium. When I was able to come home, i suffered from depression because my calcium was still very low. Months after surgery i had to eat tums, take calcitriol, ( i still had to take pills which defeated the surgery ) lol trust me I've learned my lesson as i let my calcium get too low i also had a seizure while at work, fell and busted my eye lid open. Hope my experience can give some insight, my suggestion just take the medication your dr prescribes if possible.

Good Luck!

[KidneyBham in reply to Jennypenny89]

Thanks jennypen89, I’m not even thinking about no surgery, I’m just going to continue taking the cinacalcet

[Dara3351]

My other levels are high but have come down since the transplant . I was denied taking cinicalcet because I was never on dialysis. Go figure! I was getting ready to have the parathyroid surgery but I got called for the kidney transplant.

[KidneyBham in reply to Dara3351]

Congratulations on your transplant

[mtwskk]

I'm the same its a balance between calcium and PTH if I take calcium daily the other goes down but calcium gets high, if I drop back on the calcium the other skyrockets. As you know it's a cocktail of medicines get stable and try not to change until one of your counts is too high. It's up to you to watch your counts a as no one else will

[KidneyBham in reply to mtwskk]

Your right, thanks and take care of yourself

[rmsFlintMI]

My path was 90 recently. I just go to primary and he didn't say anything. Rose