Point of no return?

[karen547]

My PTH level is real high, and i admit im bad at taking the sensipar due to the fact that it makes me so nauseated. I have taken it 2 times since last treatment and surprisingly its not as bad-the nausea. I will continue to take it now, and hopefully I can avoid the surgery, but my question is is it true after a certain level it will not go down? Thanks!

[billybags]

karen547, My husband is having the same problem.When he was on PD his PTH was 325 (uk measurement) he has been on hemo for 3 months and it has risen to 975 which is very high. Spoke to the doctor, he don't seem that concerned,upped one of his pills, spoke to his mentor nurse she just said "don't worry you might have your glands out) Whats that about. We both need answeres.

[Jess21]

I wish I knew what high was...mine was around 500 I think at one point...I was on the lowest dose so I'm sure it was low considering most people.  The suggestion was never made for me to have surgery.
My post-transplant blood work requires me to get my PTH level done every three months.  They did it 2 weeks ago, and when I called the lab at my hospital for results, I was told that it was "high" at 99.  A year ago I would've killed for it to be that!  Sometimes the commentary I get from these nurses is pretty funny....(i.e.: 2 weeks after transplant having blood in your urine can really freak them out!  )

[Wallyz]

Sensipar is showing itself to have much higher rate of significant side effects than reported in the literature.  I am now on the po Zemplar, which is more expensive, but is staying down. We'll see about effectiveness next week.  Talk to your doctor about the oral Zemplar.  Are you on Medicare, or private insurance?

[Goofy]

My PTH is also very high and I take Zemplar.  I know its expensive so when I go for my monthly visits, I always ask for samples.  They are very generous with them. 

[RichardMEL]

karen547, My husband is having the same problem.When he was on PD his PTH was 325 (uk measurement) he has been on hemo for 3 months and it has risen to 975 which is very high. Spoke to the doctor, he don't seem that concerned,upped one of his pills, spoke to his mentor nurse she just said "don't worry you might have your glands out) Whats that about. We both need answeres.

They're talking about a  parathyroidectomy (yes a mouthfull) or as one nurse put it to me so charmingly "they want to slit your throat!" - basically if the PTH is too high and they can't control it with meds your next (and common) option is the parathyroidectomy - basically surgical removal of the PT glands - mostly located in the neck (there are 4 or 5 IIRC - some people have more, and they're not always in the same place). These glands relase PTH so getting rid of all or most of them would lower the amount of PTH in the body which would stop leaching the Phos/Calcium from the bones (which causes brittle bones/bone disease, leading to easy fractures, breaks and other nasties).

The op as I understand it is actually pretty common and way less serious than it sounds - many folks on IHD have had it without incident so from that point of view it's not a big deal (despite kind of sounding like it)... I'm just as happy to not have it though!!


I'm interested in the sensipar side effects comments. I've been on it for nearly 2 years and for me it's worked a DREAM! My PTH is around 30ish and in the words of my neph it has "saved" me from the PT gland removal.... So I am very happy that I seem to tolerate it well.

[karen547]

Ive been taking my 60MG of Sensipar since Monday. Not as bad as I thought! Hopefully my PTH levels will go down. 

[RightSide]

A high PTH indicates that your parathyroid glands have expanded to produce more PTH. This is known as "secondary hyperparathyroidism."

If that contiues, it will get to a point where those glands will continue to produce excessive PTH regardless of the calcium or Sensipar levels in your blood.  That's called "tertiary hyperparathyroidism."  At that point, you can no longer control your PTH with medication, and you will need surgery to remove part of all of the glands.

[Zach]

You'll find more information on the IHD post:

http://ihatedialysis.com/forum/index.php?topic=12188.msg249487#msg249487

Plus here is information from the National Kidney Foundation (U.S.A.):
http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide8B.htm

GUIDELINE 8B. VITAMIN D THERAPY IN PATIENTS ON DIALYSIS (CKD STAGE 5)

8B.1 Patients treated with hemodialysis or peritoneal dialysis with serum levels of intact PTH levels >300 pg/mL (33.0 pmol/L) should receive an active vitamin D sterol (such as calcitriol, alfacalcidol, paricalcitol, or doxercalciferol; see Table 28) to reduce the serum levels of PTH to a target range of 150 to 300 pg/mL (16.5 to 33.0 pmol/L). (EVIDENCE)

8B.1a The intermittent, intravenous administration of calcitriol is more effective than daily oral calcitriol in lowering serum PTH levels. (EVIDENCE)

8B.1b In patients with corrected serum calcium and/or phosphorus levels above the target range (see Guidelines 3 and 6, respectively), a trial of alternative vitamin D analogs, such as paricalcitol or doxercalciferol may be warranted. (OPINION)

8B.2 When therapy with vitamin D sterols is initiated or the dose is increased, serum levels of calcium and phosphorus should be monitored at least every 2 weeks for 1 month and then monthly thereafter. The plasma PTH should be measured monthly for at least 3 months and then every 3 months once target levels of PTH are achieved. (OPINION)