Did Your PTH Go Down When You Had A Transplant?

[Cordelia]

To those of you who have had a transplant, did your PTH go down once you got a new kidney?

The doctor this morning mentioned my PTH is back up. Its been an off and on problem for a  long time. Sometimes its an issue, sometimes its not.

Anyways, I'm taking one vitamin D tablet daily and one calctriol  daily. 

I used to only take the calcitriol 3 times a week but they bumped me to once daily.

So that is fine....anyways....fast forward to today when the doc is in. She wants me to take TWO tablets daily cuz the PTH is up again. I was like HUH? Nobody said anything to me in the last couple of months on how the PTH has been. I figured no news is good news, right?

Anyways,  the one nurse asks me if I've changed anything in my diet. My answer was "No" my Phosphorus, my calcium is PERFECT, so WHY in the dickens is my PTH up?! This does not make any sense to me esp since the calcium and the phosphorus is fine.
She also asked me if  had any recent changes in urine output and I said, "No" Apparently, from what she told me its a science trying to get everything alligned.....

Anyways...I ask the nurse whether or not having a transplant will make it finally lower once and for all. I'm so sick of them playing around with the calcitriol. I am highly intolerant to Tums and have a severe reaction to them, I can't take Tums over and above. .....

So, My nurse tells me, well, having a high PTH can actually perhaps DELAY a transplant and I was like, "WTF?!"  She says, don't take me as gospel, but it could.

So this concerns me.....I COULD be looking at a transplant in the following months, so naturally, I'm  LITTLE concerned.

I had never heard of this before, I just assumed a better working kidney, would make it come down, is this the case or not for some people? I'm wondering what your experiences have been with this.  Because she mentioned the PTH removal surgery but really, with possibly getting a new kidney perhaps in the next half year, why would they go to the great length of surgery if a transplant in the end will just correct and normalize it?

Another doctor in the past mentioned Sensipar but unfortunately, my drug plan/insurance refuses to pay for it, I have no idea why, I just know they won't cover it.  So my nurse says surgery is only a last-ditched resort, medications are tried first.  She then proceeded to tell me that if I have to go on Sensipar, that our OHIP plan WILL pay for it.

The funny part in all this is that the doctor was going by my MAY lab results on not June's lab results which was just done on Tuesday. WHY my neph never said boo about my PTH had it been high last month, nothing was ever said.

So I'm confused and I don't understand.  One just assumes that no news is good news.......NOT! 

One reallly has to be an advocate for their own health, so I'm learning. Just when you think everything is 'fine' and you get thrown a curve ball!       

So what I'm really asking of you all here who have had transplants, did the PTH for you go down, if yours was high pre trannsplant?

Anyways,     my calctriol has been bumped up to two tablets three times weekly, on Mon, Wed and Fri. I am to only take one tablet on the off days, like  had been doing and seeing if adding an extra few tables a week, makes a difference.

[jbeany]

I was taking meds for mine pre-transplant, and it dropped on its own after.  I had already had surgery once, though, since the meds had stopped working for me and my PTH was hitting levels in the 1000's and higher.  (Minor rant inserted here, about surgeon who refused to take both the vastly oversized gland as well as the slightly swollen one, out at the same time.  He only took the larger one out, and I was back on meds in a month, although at a much lower level.)

I do remember reading about some recipients who still had PTH issues after the transplant.  I don't think it's a guaranteed cure for the problems - depends on how serious it is.  I think that is true for delaying transplant, too.  A minor elevation is unlikely to do much to stop a transplant, but a long period of high levels may be a bigger cause for concern.

[jeannea]

I took Sensipar for a month after transplant. Then I got a blood test and the result was great so my doc said to stop the Sensipar. When I was on dialysis, Sensipar worked great but I paid over $200/month for it. Get your social worker or someone to confirm the cost with your insurance company before you switch to it.

My PTH was 60 a month after transplant. Encouraging, isn't it?

[Cordelia]

Guess what?

I got a call from my dialysis unit this morning (early) to tell me to go back to my once daily calcitriol, apparently the PTH came down for the June labs.

So that is great news, I'm so glad I don't have to worry about increasing at this point!         

[RichardMEL]

I'm glad your PTH came down - that's great.

Just to answer your question anyway - PTH has been oneof the few "minor" concerns since my tx as it is staying elevated - not super high, but outside the normal limit. For about 6 months or so I was on sensipar post-tx but the govt won't technically allow it since I'm not on dialysis anymore (I'd have to pay full price for it). Anyway the docs here are not that concerned at this point - they keep saying that it can take "a couple of years" for the PTH to come down naturally). I was also taking some cancitricol one every other day for a time, but my Calcium went up, so they let that stop. Having another PTH test next week so we'll see where I'm at.

[Cordelia]

I'm glad your PTH came down - that's great.

Just to answer your question anyway - PTH has been oneof the few "minor" concerns since my tx as it is staying elevated - not super high, but outside the normal limit. For about 6 months or so I was on sensipar post-tx but the govt won't technically allow it since I'm not on dialysis anymore (I'd have to pay full price for it). Anyway the docs here are not that concerned at this point - they keep saying that it can take "a couple of years" for the PTH to come down naturally). I was also taking some cancitricol one every other day for a time, but my Calcium went up, so they let that stop. Having another PTH test next week so we'll see where I'm at.

Oh my goodness, sorry I missed your post here, Richard. Thanks for letting me know your experience!  Has your PTH gone down now?   

I'm on calctriol daily and 1000 Vitamin D, seems to be doing good so far.

[mcclane]

being on dialysis for so long, I don't recall (and even if they did I probably didn't pay attention  ) anyone saying anything about pth, I don't even know what that is.  I know that when I was on dialysis, they said my calcium levels were low all the time, so I had to take alot of calcium carbonate pills, plus one alpha (vitamin D supplement). 

Now that i'm post transplant, the calcium and one alpha pills are gone.  And I've never heard my transplant clinic say anything regarding pth.

[MooseMom]

My PTH starting going up a bit pre tx, so I was told to stop taking my vitamin D, and I began taking phos binders.  It never got bad enough that I had to take sensipar.  Perhaps because of that, my tx center never even mentioned PTH.  With all the labs I'm having done on a regular basis, they aren't even testing for it.

[Cordelia]

So PTH is generally not an issue post tx then I'm guessing for most people?

[RuthWells]

Well, this is interesting.  I am 5 months post-transplant and my energy levels are still in the basement, so neph is checking iron and PTH with next blood work.  I never had PTH issues before the transplant that I'm aware of, so will be curious to see the results.

[Cordelia]

Well, this is interesting.  I am 5 months post-transplant and my energy levels are still in the basement, so neph is checking iron and PTH with next blood work.  I never had PTH issues before the transplant that I'm aware of, so will be curious to see the results.

Let us know how it goes! I'm rooting for you that everything is ok!

[RuthWells]

Thanks, Cordelia - I feel like an a$$ complaining, since everything went (mostly) so well with the surgery, but I'm impatient to be feeling like myself again!

[Cordelia]

How long ago didyou have surgery?

[Jess21]

My PTH before transplant was in the 200s, now it's 90 3yrs post transplant. Still high enough to have the bloodwork get marked as high, but my neph never says anything about it.

[Cordelia]

Thankfully there was no mention of my PTH this month for labs. Whew.