That Lovely Little Thorn In My Side, The PTH gland

[Cordelia]

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 thougt things had stabilized......

I used to only take the calcitriol 3 times a week but they bumped me to once daily back about 3 months ago.  I thought things were hunky dory.......

So that is fine....anyways....fast forward to today when the doc is in. She wants me to take TWO tabletsof calctriol 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?

Well,   anyways,  the one nurse asks me if I've changed anything in my diet. My answer was "No"  She also asked me if I've noticed a change in urine output and I said, "No"

She told me my Phosphorus AND 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.  Apparently what she also told me is that its a science trying to get everything alligned.

Anyways...I ask the nurse whether or not having a transplant will make  the PTH 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 abov the vitamin D and the calctriol. .....

So, My nurse tells me, well, having a high PTH can actually perhaps DELAY a transplant and I was like, "WHAT?!"  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 with a transplant, would make it come down. 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 to me 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 that's why they keep playing around with the calctriol.  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 government insurance plan WILL have to 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. The PTH labs were not even in this week yet, so she wanted to make changes to my pills without even going from the "June" labs.              WHY my neph never said boo about my PTH last month when he was in is beyond me, he never mentioned boo.

So I'm confused and I don't understand and the last thing I want long-term is bone issue. Oh, my levels were 65. I can't remember what 'normal' is when I asked her but I think she said  normal is much lower than 65. 

One just assumes that no news is good news.....NOT.....

So the long and short of this is what I've learned is tha One reallly has to be an advocate for their own health, so I'm learning. Just when you think everything is 'fine'  you get thrown a curve ball!       

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.

[cassandra]

Sorry Cordelia, I'm afraid that's how it is (Doctors and nurses living in their own little worlds I mean) I don't think 65 is way too high, and I don't think I would listen to any nurse, unless they can show me lab indications for what is normal for D patients. I do hope the Calcitriol does the trick though.

love Cas

[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!         

[amanda100wilson]

65 is not high.  Acceptable for kidney patients is higher than in normal population.  Seriously, you do need to be your own advocate; question, question, question.  Bizarre that they are making a fuss about a level such as this.  Sure it wasn't 650?  Even that isn't high but could be indicative of a trending upward.

[noahvale]

*

[Cordelia]

Hmmmmm Makes me wonder now....

Yes, I'm from Canada. I have no idea if the States' measurements are the same, or different.

What slays me too is that the doctor wrote the script out for me already yesterdy before she knew this months' labs. Thank God  a little voice insde of me said, don't get that script filled just yet, am I ever glad Ididn't!

Yup, one definitely has to advocate and question all the time!

[del]

In Canada they want your PTH around 300 if you are a kidney patient.  My husband's was up to 1900 a few months ago.  He never noticed a difference in Calcium and Phos when it was that high!!  The doctor increased his Sensipar and his PTH is back down to 300 - the lowest it has been in a couple of years.

[Cordelia]

300, Del?

They told me my labs were 65 for May and then June's labs I dropped to 35. 

How can mine be high then if they want it around 300?   I don't understand.     

The doctor should not have been concerned at all if that's the case!

[Big E]

Cordelia, I'm surprised you have insurance that won't pay for sensipar.  I thought Canada had universal coverage for stuff like that.  I'm so disillusioned...
 

[Cordelia]

My "private" insurance won't pay for it.

My nurse told me that if I had to definitely go on it, then yes, the government *will* pay for it.

[Zach]

For people on dialysis, PTH should be betweeen:
150 to 300 pg/mL (16.5 to 33.0 pmol/L).
http://www.kidney.org/professionals/kdoqi/guidelines_bone/guide8b.htm

A PTH level below 100 pg/mL [11.0 pmol/L] may cause Adynamic Bone Disease.

"13C.1 Adynamic bone disease in stage 5 CKD (as determined either by bone biopsy or intact PTH <100 pg/ml [11.0 pmol/L]) should be treated by allowing plasma levels of intact PTH to rise in order to increase bone turnover. (OPINION)"
http://www.kidney.org/professionals/kdoqi/guidelines_bone/guide13c.htm



Edited to make bold certain values and names.

[Cordelia]

Thank you so much Zack for sharing that, I find that helpful, thanks!!!         

I'm just wondering though, maybe someone can clarify, can you also have bone problems if your PTH is on the Low side?   too?

[amanda100wilson]

Yes, that is what Zach is referring to.

[Cordelia]

Gosh, I'm learing so much! The stuff I didn't know!

[smcd23]

Just be glad they got it under control. My SO is currently in the hospital after having 3.5 of his parathyroid glands removed on Monday. At his last labs his phosphorus was a little high, calcium was a little low and his PTH was over 2k! (They had been steadily increasing over the past year or so despite the calcitrol, sensipar and binders) I hope they can keep yours under control! He is hospitalized because his calcium took a drastic drop but I think it was leveling off after his 4pm labs. Hopefully he can come home tomorrow, I'm lonely.

[jbeany]

Just be glad they got it under control. My SO is currently in the hospital after having 3.5 of his parathyroid glands removed on Monday. At his last labs his phosphorus was a little high, calcium was a little low and his PTH was over 2k! (They had been steadily increasing over the past year or so despite the calcitrol, sensipar and binders) I hope they can keep yours under control! He is hospitalized because his calcium took a drastic drop but I think it was leveling off after his 4pm labs. Hopefully he can come home tomorrow, I'm lonely.

Stock up on Tums!  I chewed through a couple of bottles in the days after my surgery.  Hope he feels better soon!

[Cordelia]

smc, I hope that your SO gets better soon!       

[Whamo]

I get a feeling that dialysis cheats death, and Mr. Death doesn't like it, so eventually, Mr. Death wins, but life can be really good, at times, even for us dialysis patients, so it's worth the fight to the end.

[smcd23]

He came home today and is complaining of a sore neck (duh) but also that all his joints hurt. Hoping it's because he was in bed since Monday and not some strange side effect of having the surgery.

[Cordelia]

I hope the soreness goes away soon!

[del]

Big E, Canada does have universal health care (MCP) but it doesn't cover medication.  I had to apply to my health insurance to get the sensipar covered.  It is VERY expensive.  For 30 30mg pills it costs close to $1000!!!  With my insurance we only pay $7.95 for 30.  Some insurance companies will not cover them at all. 

[Cordelia]

Big E, Canada does have universal health care (MCP) but it doesn't cover medication.  I had to apply to my health insurance to get the sensipar covered.  It is VERY expensive.  For 30 30mg pills it costs close to $1000!!!  With my insurance we only pay $7.95 for 30.  Some insurance companies will not cover them at all.

Nope, you're right, Del, My private insurance won't cover it, either. Gosh, I didn't know it was that expensive!