Pth

I guess I am the strangest patient here with unusual “problems”. For a long time low b/p was my biggest problem, but it is starting finally to stabilize in the low normal range.

Then my PTH skyrocketed it got as high as 2200. I was on 2.5 mcg of calcitriol daily (which wrecked havoc with my calcium), 90 mg of Sensipar daily and it still climbed. It finally started on the way down getting to the 800 - 1000 range, still talk of parathyroidectomy, almost scheduled for January. Two months ago my neph finally agreed to a change to Hectoral, they didn’t want to cover it, I was put on 5 mcg daily. Well, my labs came back and lo and behold my PTH had dropped to 200!!

Has anyone else experienced a huge drop due to taking hectorol?? This is the only change in my medication, it has to be due to this. They also repeated the test just to make sure it wasn’t an mistake and the number stayed low. My alkaline phosphatase also dropped significantly, another indicator that the bone disease is reversing.

All other tests were okay, nothing too out of whack.

Cathy
home hemo 9/04

[QUOTE=Cathy S;12730]I guess I am the strangest patient here with unusual “problems”. For a long time low b/p was my biggest problem, but it is starting finally to stabilize in the low normal range.

Then my PTH skyrocketed it got as high as 2200. I was on 2.5 mcg of calcitriol daily (which wrecked havoc with my calcium), 90 mg of Sensipar daily and it still climbed. It finally started on the way down getting to the 800 - 1000 range, still talk of parathyroidectomy, almost scheduled for January. Two months ago my neph finally agreed to a change to Hectoral, they didn’t want to cover it, I was put on 5 mcg daily. Well, my labs came back and lo and behold my PTH had dropped to 200!!

Has anyone else experienced a huge drop due to taking hectorol?? This is the only change in my medication, it has to be due to this. They also repeated the test just to make sure it wasn’t an mistake and the number stayed low. My alkaline phosphatase also dropped significantly, another indicator that the bone disease is reversing.

All other tests were okay, nothing too out of whack.

Cathy
home hemo 9/04[/QUOTE]

You aren’t the only one trying to figure out pth- add me to the list! In my case, my pth is currently at 1300. It has been high for a long time, the highest being about 1500. My neph goes by the scantibodies ratio which has been low for many months. I have recieved no vit D analog all this time due to the low ratio. After starting daily txs (finally made it), my alkaline phos. became elevated. Neph said this indicated bone activity. He then put me on Hectorol. Pth came down a little this month, but not much. Ratio came up, but is still not where it should be. Neph’s approach is to increase Hectorol dosage. So, won’t know until next labs what state pth is in. Neph said if Hectorol doesn’t work, although my dose is much less than yours, the next step is to try Sensipar. Reading how your dose had to be increased a good bit before you got results makes me wonder if I simply am not getting a high enough dose???

You say your alk phos dropped significantly. What was it previously and what is it now? In my case, when my alk phos jumped up to 400, my neph said that was good news, as whereas I previously had low bone turnover (adynamic) with a high pth, I now have bone activity again.

Everyone I know says a high pth is serious, but my neph says not to be concerned, because the ratio is what is important (more accurate measurement). Very confusing subject- I still don’t understand it. I’ve read many explanations of it, but none have made sense to me yet. If I had another neph I trusted to go to for a second opinion I would. I understand that even the experts disagree on how the balance works. I may be getting the correct guidance from my neph, or he may have let the ball drop- I have no way of knowing until someone suceeds at clarifying for me what is going on. I find it very interesting that the increased dose of Hectorol has you leveled out again. Does your program use scantiblodies labs? Because I am not certain, but think I may of initially become adynamic yrs. back due to vit D analog not being cut off in time. Back then, the unit I was in did not measure pth using scantibodies, so my pth may of plunged too low.

Wow, my Alkaline Phosphatase never got over 150, the moment it started rising my neph acknowledged that bone disease was starting and finally got on the bandwagon. I think it is terrible to wait until bone disease starts to do something about it, I think watching the PTH climb was an indication that it was starting, my clinic fought on my behalf and got meds. I am actually hoping to get off the sensipar, my clinic says that once you start it you have to stay on it, but I’ve dropped from 90 a day to 45, and hope if the PTH numbers stay low on 2.5 hectorol that I can try to cut the 45 in half and see what happens.

Personally, according to my neph and clinic, the high PTH with the very high Alk Phos bone disease is occurring for you and I would fight tooth and nail to increase the hectorol until it comes down, the fact that it decreased some is a good indication that it will work. You can always cut back once the disease is reversed.

Cathy

[QUOTE=Cathy S;12730]I guess I am the strangest patient here with unusual “problems”. For a long time low b/p was my biggest problem, but it is starting finally to stabilize in the low normal range.

Then my PTH skyrocketed it got as high as 2200. I was on 2.5 mcg of calcitriol daily (which wrecked havoc with my calcium), 90 mg of Sensipar daily and it still climbed. It finally started on the way down getting to the 800 - 1000 range, still talk of parathyroidectomy, almost scheduled for January. Two months ago my neph finally agreed to a change to Hectoral, they didn’t want to cover it, I was put on 5 mcg daily. Well, my labs came back and lo and behold my PTH had dropped to 200!!

Has anyone else experienced a huge drop due to taking hectorol?? This is the only change in my medication, it has to be due to this. They also repeated the test just to make sure it wasn’t an mistake and the number stayed low. My alkaline phosphatase also dropped significantly, another indicator that the bone disease is reversing.

All other tests were okay, nothing too out of whack.

Cathy
home hemo 9/04[/QUOTE]

Sometimes pth levels can fluctuate anyway. Mine had gone REALLY high and caused me to have a thyroid storm and eventually radio-iodine therapy to shut down my thyroids. I’m now on a replacement hormone. If you have hyperthyroidism…aka Grave’s Disease…then the levels fluctuate a lot. That’s what they told me anyway.

Shannon

Actually I am hypothyroid, wish it would trigger my thyroid but it hasn’t.

Cathy

Cathy,
In answer to your original post, I read where one person said she was put on Sensipar when her pth became elevelated and it went down into normal range in just 2 wks. Don’t recall reading about any huge drops with Hectorol, but did read where patients said it does well for them. I guess either everyone is very different in how they respond to meds or maybe the dosage they are getting is not correct. Also, medical people may look at the picture differently. You say yours were considering parathyroidectomy for you when your pth was at the 800-1000 level. Mine say the surgery is only warranted if pth gets really high like over 3000.

Another thing to consider is each patient may have different things going on. Like I had asked if you were familiar with the Scantibodies Ratio, because with me, my pth had been oversupressed and the ratio was low. So, that meant I was taken off vitamin D analogs. I was told low bone turnover reverses on its own, but it takes a long time ( maybe 2 years). It was found that the regular way of measuring pth was inaccurate and patients were becoming oversupressed. Scantibodies ratio is more accurate and units like mine have gone to it.

You also say that high alk phos is bad in your case, but in my case, neph says it is a good sign of bone activity (could be that daily txs got things moving) and so now he is gradually increasing my Hectorol. I take a much smaller dose than you so far, but my pth was not as high as yours. Do you take Hectorol IV or orally? I am on oral and read that oral is not as effective as IV unless one is pre-dialysis.

I have read that something like 60% of dialysis patients are adynamic due to oversupression from incorrect pth measurement/dosing and other reasons. I was on vit D analogs for years with the pth going up and down, but not too elevated. Finally, it went too low. I never got a clear explanation for how this happened other than that the vit D analog should of been cut, but after this, I was taken off vit D analogs. My current neph had been waiting for my ratio to come up before taking other steps. So, I have been in a holding pattern until now. It may be that going to daily txs is what has turned things around for me. Have you ever read the information at the Scantibodies site? This is a confusing issue and I have yet to understand if this is something that can be mananged properly or if it occurs inspite of correct management. Scantibodies seems to say pth can be measured and managed effectively using their ratio. I have yet to fully understand the subject as I have had many other renal issues to study out. This is an important issue and so are many others. I am in a race to figure it out before it does more damage.

[QUOTE=Jane;12748]Cathy,
In answer to your original post, I read where one person said she was put on Sensipar when her pth became elevelated and it went down into normal range in just 2 wks. Don’t recall reading about any huge drops with Hectorol, but did read where patients said it does well for them. I guess either everyone is very different in how they respond to meds or maybe the dosage they are getting is not correct. Also, medical people may look at the picture differently. You say yours were considering parathyroidectomy for you when your pth was at the 800-1000 level. Mine say the surgery is only warranted if pth gets really high like over 3000.[/QUOTE]

Actually it was when in exceeded 2000 and had been going up in spite of being on daily calcitriol and 90mg of sensipar.

It was found that the regular way of measuring pth was inaccurate and patients were becoming oversupressed. Scantibodies ratio is more accurate and units like mine have gone to it.

Yes, I have heard this but neither my unit or my doctor yet uses this test.

I am on oral and read that oral is not as effective as IV unless one is pre-dialysis.

I am on oral. High PTH and high alk phos indicates bone turnover which is bone weakening. With a low PTH and low alk phos it is the opposite and bad. I guess our doctors/units just disagree with each other. Mine is concerned about the huge drop but want to see the trend before trying anything else. First step was to cut the hectorol in half. If things remain stable or go up just a bit (desired) then they will try to cut the sensipar in half and hopefully to eventually get me off the sensipar, but I’ve heard it is difficult to do.

Cathy

Cathy,

I do not know what type of home dialysis you are using, but if it is nocturnal hemodialysis, you might want to ask your nephrologist to look at your calcium balance. Most dialysis patients have high PTH due to high phosphorus and low vitamin D.

However, nocturnal hemodialysis patients can have high PTH levels due to their calcium levels being low while on dialysis for 6 nights a week. That is why most nocturnal hemodialysis patients are on a 3.0 or greater calcium bath while incenter patients use a 2.5 calcium bath.

Many nephrologists forget that the most potent stimulus for PTH increase is hypocalcemia because that is not usually what they see.

[QUOTE=Cathy S;12751]Actually it was when in exceeded 2000 and had been going up in spite of being on daily calcitriol and 90mg of sensipar

I am on oral. High PTH and high alk phos indicates bone turnover which is bone weakening. With a low PTH and low alk phos it is the opposite and bad. I guess our doctors/units just disagree with each other. Mine is concerned about the huge drop but want to see the trend before trying anything else. First step was to cut the hectorol in half. If things remain stable or go up just a bit (desired) then they will try to cut the sensipar in half and hopefully to eventually get me off the sensipar, but I’ve heard it is difficult to do.

Cathy[/QUOTE]

See what you mean about why your neph was considering surgery for you. And had not heard that Sensipar is difficult to get off of- thank you for informing me. I will be interested in what you find out about the huge drop.

[QUOTE=Unregistered;12760]Cathy,

I do not know what type of home dialysis you are using, but if it is nocturnal hemodialysis, you might want to ask your nephrologist to look at your calcium balance. Most dialysis patients have high PTH due to high phosphorus and low vitamin D.

However, nocturnal hemodialysis patients can have high PTH levels due to their calcium levels being low while on dialysis for 6 nights a week. That is why most nocturnal hemodialysis patients are on a 3.0 or greater calcium bath while incenter patients use a 2.5 calcium bath.

Many nephrologists forget that the most potent stimulus for PTH increase is hypocalcemia because that is not usually what they see.[/QUOTE]

I am on short daily. I constantly fight a high calcium not low, in spite of limiting my calcium as much as possible. I eat little cheese, no milk products, except a little cream in one cup of coffee 1-2 times a week. Phosphorous tends to be in the 4s and 5s, acceptable.

Cathy