How long does it take to get your PTH down?

[mallory]

When I had my first labs after starting dialysis, they told me my PTH was high (it was 753) and they started me on Hectorol, 2.5 mcg per day.  I have faithfully taken it every single day.  After three weeks on Hectorol, they took more labs.  They just called me and told me my PTH is at 980!  What the heck?!  How long does it take to go down once you start taking the medication?  She said not to worry, it will go down "after awhile".  Well, I am worried because, thank heavens,  I've read on this site what high PTH can do to you.  Should I give it another month?  Or should I insist they give me more Hectorol or change my medication?

[BigSky]

Not sure how long it would take.

Hectorol was never able to bring mine down.  It was only after using Sensipar did it drop.

[jbeany]

I just got a scrip for Senispar.  The local pharmacy had to order it, since they don't carry it.  I hope it doesn't take long to work - my PTH levels were 1250.    (I just started dialysis, so this is the first time they have been checked.)

[mallory]

I hear you, jbeany.  I wish mine would drop, too.  I'm just not sure how long it can be high before it starts to affect you.  And I wish my clinic was a little more concerned about it.  But they just said "Oh well, it will probably go down next month."  Maybe that's okay, but I wish they'd explain it better, you know what I mean?

[Zach]

I never understood the lack of urgency on the part of some nephrologists.  Part of the problem is that they may only check the PTH once every three months.

I've been given as much as 4mcg of IV Hectorol x 3wk in 2005 and 2004.  Always given as a "push" as I'm coming off the machine.  My PTH was always up and down, and we adjusted the dose accordingly.  My PTH went from a high of 970 to a low of 125.

I'm now on IV Zemplar 2mcg, and there seems to be less of the roller coaster values.  Now it's about 300.

[angela515]

I was on Hectorol and Sensipar to control my PTH levels, it was a combo of those 2 AND watching my diet that lowered my PTH levels. It took a month for it to come down, but it came down. Mine was high for so long I started getting calcium deposits and calcifilaxious. Since my transplant on Sunday, my sores are starting to heal aready since my labs are normal now.

I would be persistant b/c PTH levels are nothing to play with and not be concerned about.

[BigSky]

I never understood the lack of urgency on the part of some nephrologists.  Part of the problem is that they may only check the PTH once every three months.

I've been given as much as 4mcg of IV Hectorol x 3wk in 2005 and 2004.  Always given just as a "push" as I'm coming off the machine.  My PTH was always up and down, and we adjusted the dose accordingly.  My PTH went from a high of 970 to a low of 125.  Too low a PTH is not good either? for it can lead to Adynamic Bone Disease.

I'm now on IV Zemplar 2mcg, and there seems to be less of the roller coaster values.  Now it's about 300.

I do not understand either why its only done every three months either.

Mine dropped from roughly 1000 down to roughly 300 in a month on senispar. 

I really do not understand it much.  My pth has been jumpy from month to month even though I take the same senispar and hectorol.  Usually jumps 270's to 370's range.   Last test it nosedived to 66 and they eliminated the hectorol completely.

[mallory]

Does your diet affect your PTH level?  Or just the med's?  They said all my other tests were fine, my PTH was up and I needed more Aranesp.  But is there something I can change in my diet to help my PTH level?

[Zach]

Does your diet affect your PTH level?  Or just the med's?  They said all my other tests were fine, my PTH was up and I needed more Aranesp.  But is there something I can change in my diet to help my PTH level?

Keeping your Phosphorus in the low range of 3.5-5.5 mg/dl and your Calcium between 8.4-9.5 mg/dl is the best way to help with your diet.

And remember, too low a PTH is not good either-- for it can lead to Adynamic Bone Disease.
http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide13C.htm

[angela515]

Does your diet affect your PTH level?  Or just the med's?  They said all my other tests were fine, my PTH was up and I needed more Aranesp.  But is there something I can change in my diet to help my PTH level?

yes, your phosphorus and calcium levels affect it. So watch your phosphorus intake.

[mallory]

Thanks, Zach and Angela.

Angela,  It's so good to see you posting, even with a brand new transplant.  I'm glad you're feeling well and I hope it continues.  You've really added a lot to this site and I hope you'll keep posting, you have a lot of good insight and I enjoy your posts!

[Zach]

ditto!
 

[del]

Hubby's PTH was about 800-900 when he was in center.  He was on Calcijex 3x a week.  Even then still 400+.  Since starting nocturnal down to about 350.  No calcijex.  Taking rocaltrol.

Congratulations Angela on your new transplant!!

[kitkatz]

Okay so, anyone think about this one?  Has anyone researched the effects of dialysis on the PTH levels on dialysis patients?  It seems we are seeing high PTH levels quicker now, so are they doing something different with dialysis that is causing a higher PTH level? I mean seriously, dialysis affects every part of the body, there has to be something that causes it besides the diet.

[angela515]

Very good question kitkatz. When I was on dialysis in 1999 I was on hemo. I never had problems with my PTH levels, and I only took tums with some of my meals for a binder. 

Second time around on dialysis started off on hemo, 2004, started having PTH probs and started using binders such as PhosLo and others.

[mrhecht]

Sensipar and Hectorol combo lowered my PTH from the 1300s to 163 over about 4 months. It is a great, albeit ridiculously expensive drug. If you are on a limited income, the company that makes it has a program you can apply for. My advice to anyone who has a high PTH, to be proactive with your physician about getting and keeping it lowered. If Hectorol alone does not significantly lower your PTH below 300 after 6 months, I would insist on taking Sensipar too. Social worker or dietitian should have info on Sensipar programs. Some of the Medicare Part D policies will pay for it.

[paddbear0000]

Okay so, anyone think about this one?  Has anyone researched the effects of dialysis on the PTH levels on dialysis patients?  It seems we are seeing high PTH levels quicker now, so are they doing something different with dialysis that is causing a higher PTH level? I mean seriously, dialysis affects every part of the body, there has to be something that causes it besides the diet.

I was trying to find out what the normal range is for PTH and came across this thread. I find kitkatz's question rather interesting. I just got my first labs back from dialysis, and my PTH level is 1640!! It was checked last October and was fine. Holy crap!! What happened during these last 4 months? My kidneys have been failing for 4 years now, but my function did drop quite a bit and quite suddenly in January, and I started dialysis 1 month ago. My potassium and phosphorus levels are still normal, but my calcium is low. I think kitkatz may have the right idea.

[Zach]

 My potassium and phosphorus levels are still normal, but my calcium is low.

A low calcium will cause the production of more PTH.
Plus, as the kidneys fail, they convert less "active" Vitamin D, which normally keeps the parathyroid in check.

[paddbear0000]

My vitamin D is very low too.

[Romona]

My nephrologist thought my PTH was under control. Mine is low compared to some of the numbers here. I also have a low phosphorous level because of tubal damage from Prograf after transplant. I have terrible bone pain. I can not imagine how people with higher levels handle the pain. I am taking more vitamin D now and increased the phosphorous in my diet.

[paddbear0000]

Increasing phosphorus wouldn't be hard for me. More cheese!!! It would also help with my calcium issue too.   

[RightSide]

I've got a good PTH story:

When I first started hemodialysis in November, my PTH was over 1200.  So they started me on IV Zemplar 8 mcg in each dialysis session, and kept titrating the dose according to some automatic algorithm they swear by.  So my PTH started dropping, down to around 450.  Then their automatic algorithm "decided" that was good enough, and cut my Zemplar dose in half (to 4 mcg) without notifying me.  A month later, my PTH had shot right back up again, to 900. 

I complained to the dialysis nurses and to my nephrologist, and together we decided that:

a) My Zemplar dose would be raised to 10 mcg per session;

b) it would remain at that dosage level, no matter what the algorithm says, until my nephrologist decides otherwise; and

c) under no circumstances will any more dosage adjustments be made (to any of my IV medications) without notifying me.

Right now, my PTH is back down to 475, and I'm hoping that it continues to drop with this high dose of Zemplar.  If not, I've got a scrip for Sensipar, if needed.

[Zach]

I complained to the dialysis nurses and to my nephrologist, and together we decided that:

a) My Zemplar dose would be raised to 10 mcg per session;

b) it would remain at that dosage level, no matter what the algorithm says, until my nephrologist decides otherwise; and

c) under no circumstances will any more dosage adjustments be made (to any of my IV medications) without notifying me.

Excellent strategy!

[paddbear0000]

Okay so, anyone think about this one?  Has anyone researched the effects of dialysis on the PTH levels on dialysis patients?  It seems we are seeing high PTH levels quicker now, so are they doing something different with dialysis that is causing a higher PTH level? I mean seriously, dialysis affects every part of the body, there has to be something that causes it besides the diet.

I was trying to find out what the normal range is for PTH and came across this thread. I find kitkatz's question rather interesting. I just got my first labs back from dialysis, and my PTH level is 1640!! It was checked last October and was fine. Holy crap!! What happened during these last 4 months? My kidneys have been failing for 4 years now, but my function did drop quite a bit and quite suddenly in January, and I started dialysis 1 month ago. My potassium and phosphorus levels are still normal, but my calcium is low. I think kitkatz may have the right idea.

I kind of forgot I had posted in this thread. It turns out that my PTH was only 164.  The labs showed 164..., which, silly me, I assumed there were more numbers after that. Apparently not. My neph said non-dilaysis patients should be no higher than 72, but dialysis patients are kept at about 3 times that level. WTF?! we already have enough things causing harm to our bodies!! He said he's not concerned, but I am. I went back and looked at the labs they drew on my first day, after my run, and discovered that my PTH was only 36. So it is obviously climbing very fast.

[Wallyz]

Dmage occurs when you PTH is over 500 for long periods of time.  You are fine until it hits 300 or so.