High PTH

[tigtink]

My PTH levels had not been checked in a while when I went to University of Wisconsin Madison for a re-evaluation appointment. It's always been in the normal range, though not terribly high. Nine years ago when I first went into state 4 it was 12 or 13, then it settled in the 30's for years. It went up to 81 a couple of years ago. That's the highest it has been. When they tested it at Madison this month it came back as 257. I am waiting to hear back from my nephrologist, but I know many of you have had PTH issues (including MooseMom) so I thought I would ask for some feedback. My gfr has remained pretty stable in the 17-18% range.

What is puzzling to me is that my phosphorus is normal at 4.4, my calcium is at the high end of normal at 10.0 (it is usually just below that), and last December my vitamin D levels were normal at 66. I don't understand why the PTH would be so high when everything else is in normal range. How common is this in the pre-dialysis stage and is this something that will need to be treated? I've tried to research this but it is very confusing. Perhaps this was an inaccurate reading but it is disturbing. I know it is not terribly high for a dialysis patient but it high for someone not on dialysis.

I really fear bone and mineral disorder because I already have arthritis, weak knees, and joint pain. I exercise regularly to minimize the effects, but bone disease would really endanger my mobility.

Any thought for those of you who have dealt with this?

[Michael Murphy]

My current ipth is 347 and according to Fresenius 150 to 600 is the normal range

[tigtink]

Thanks, Michael. I understand that is the range for dialysis patients, but there is different range for the pre-dialysis stage. I believe normal for pre-dialysis is 70-110.

[UkrainianTracksuit]

Hyperparathyroudism is pretty common in pre-dialysis CKD-patients. For me, it showed up at Stage 3 and they started me on alfacalcidol then.

We often focus on the GFR function of kidneys and their clearances. But, as the damage to both of them progresses internally, it has secondary effects on other functions. (Think of renin production in regard to blood pressure.)

So, when the physical structure of the kidney worsens from disease, it also effects the calcitriol/Vit D production. The kidneys aren’t handling that one particular function right now. That’s why it still shows up pre-dialysis but while other levels remain relatively where they should be.

PTH numbers fluctuate. I remember that mine were elevated for awhile until they got to a level where medication was prescribed. And after that, when they were higher than “acceptable high”, the doc waited to see a pattern before he increased the alfacalcidol.

As far as I am aware (dialysis classes), that the bone effects of a high PTH only begin to materialize after an extended time where it is left untreated. Once your doctor sees the test results, they will know what to do and if you need to start medication.

Just as an example, I’m struggling with an elevated PTH a year post-tx. It’s not enough to require medication but it has sat at normal levels then bounced around at a higher zone for really no reason.

[MooseMom]

Just for the record, I never had any PTH "issues", if my "issues" you mean that treatment became necessary.  I don't remember the specifics, but seeing as I got down to stage 4/5, it is probably safe to assume that my PTH was higher than normal, but I never had to take meds.

I did have to resort to phosphorus binders in the end.  Potassium was always the biggest problem for me, to the point where before I got my new kidney, I was downing 12 tablets of sodium bicarb a day!

I am very interested in hearing what your neph has to say about your PTH.  Let us know, OK?

[MooseMom]

Believe it or not, I have saved paper copies of all of my labs since 2004.  So, I went back and had a look at the last comprehensive set of results of labs I had done before I was transplanted.  So, these numbers are from late 2011; my PTH was 110 which yes, was high, but apparently not high enough that warranted meds.

At the time, my egfr was around 14, and my creatinine was around 3.5.

I don't know if this info helps you at all, tigtink.  Probably not since all of us seem to have wildly fluctuating lab results.  Everyone seems to have one area that's particularly problematic.

I don't blame you for feeling very unsettled about your PTH level.  EVERYYHING about this pre-dialysis stage is so scary!  It IS high, but I don't know if it is so high that your neph will be concerned.  Again, let us know what you find out.  Many of us would welcome an answer to your question.

[tigtink]

Thanks for the reply Ukrainian. That is helpful information. From what I've read, the treatment for high PTH pre-dialysis is either binders if the phosphorus is high or active vitamin D if that level is low. My guess us that my nephrologist will want to retest the PTH, phosphorous, and vitamin D levels and decide whether any treatment is necessary at this point or just monitoring.

MooseMom, I was referring to a post you made back when your doctor first recommended you take binders. I believe you said your phosphorus had gone up to 4.7 and your PTH was mildly elevated at 169. Perhaps it is because your nephrologist kept such a close eye on your labs and treated the high phosphorus that your PTH came down and didn't end up becoming a problem. You wondered in that post whether the binders were really necessary since your levels were only marginally high. I'm thinking at minimum this is something my nephrologist will want to monitor these labs more closely. I'll let you know.

[MooseMom]

Thanks for the reply Ukrainian. That is helpful information. From what I've read, the treatment for high PTH pre-dialysis is either binders if the phosphorus is high or active vitamin D if that level is low. My guess us that my nephrologist will want to retest the PTH, phosphorous, and vitamin D levels and decide whether any treatment is necessary at this point or just monitoring.

MooseMom, I was referring to a post you made back when your doctor first recommended you take binders. I believe you said your phosphorus had gone up to 4.7 and your PTH was mildly elevated at 169. Perhaps it is because your nephrologist kept such a close eye on your labs and treated the high phosphorus that your PTH came down and didn't end up becoming a problem. You wondered in that post whether the binders were really necessary since your levels were only marginally high. I'm thinking at minimum this is something my nephrologist will want to monitor these labs more closely. I'll let you know.

WOW, you've got quite the memory!  LOL!  Either that, or IHD's search function works REALLY well!  But yeah, my neph was ready to pounce on that phosphorus!  He treated it as soon as it started to get outside of normal range, and yes, you are probably quite right in thinking that treating high phos resulted in lowering my PTH.

Gosh, I had completely forgotten about that.  Also, I made the mistake of assuming you were already on binders!
 

[tigtink]

Like you, I do my research MooseMom! The search feature is pretty handy

[MooseMom]

Your research was certainly more thorough than mine today! 

[Charlie B53]

My pTh used to run between 1200 and 1400.  Dr talked about surgery but started me on a couple of the Vit D's and Sensipar.  Between the two it worked and brought it down well within range, so low he reduced bot the Vit D's AND cut my Sensipar in half.

It has again risen to 400, we increased one Vit D, slightly increased Sensipar and are watching. It is slowly falling.

[tigtink]

Just heard back from my nephrologist. He is not too concerned at this point but will want to retest the PTH levels at my next visit in a couple of months. So for now we will just monitor it. At least I was motivated to further research the whole PTH, phosphorus, calcium thing. It I a complex thing to understand. I will be careful to limit my phosphorus intake. Thankfully, no new meds for now!

[MooseMom]

Oh, that's good news, tigtink.  Thanks a lot for letting us know.  No new meds is cause for celebration!

[Charlie B53]

You might consider Vit D rich foods, see if any of them will fit into your diet without any adverse effects.  That small addition may be all it takes.

As I understand, foodstuffs containing Vit's and minerals are far more effective than any pills.  So it just may have some benefit.

If any doubt, ask your Care Team.

[fightingPKD]

Luckily enough, my PTH has never been an issue. 

Even at 19 eGFR, my PTH has been easily within normal range the entire time.  I'd love to know why so i could help.  It probably is diet related.

Honestly, even at this stage in development, the only real issue other than function I've had personally is potassium levels.  They've always been at or a bit above the high end. Never over 6, but also I can't remember the last time it was lower than 4.5 either.

[Charlie B53]

An old VA Dr told me long ago that if it comes in a can or a box that I probably shouldn't eat it. Prehistoric man did not eat processed foods.

Potassium is added to most everything.

Learning what is added to our foods itn't always so easy.  Labels are printed so small I have a tough time reading them.  Recognizing some of the forms of sodium is another biggie.  Long unpronounceable words, you almost gotta Google every one to get half a clue what it is.

Once upon a time our clinic dietician talked about going to the grocery with a few of us at a time.  That was over a year ago.  Still hasn't happened.

[fightingPKD]

An old VA Dr told me long ago that if it comes in a can or a box that I probably shouldn't eat it. Prehistoric man did not eat processed foods.

Potassium is added to most everything.

Learning what is added to our foods itn't always so easy.  Labels are printed so small I have a tough time reading them.  Recognizing some of the forms of sodium is another biggie.  Long unpronounceable words, you almost gotta Google every one to get half a clue what it is.

Once upon a time our clinic dietician talked about going to the grocery with a few of us at a time.  That was over a year ago.  Still hasn't happened.

Spot on with that doctor's statement. It's almost universally true.

My wife and I have spent dozens of hours at all the grocery stores we frequent (where we live, its not exactly a food desert), just studying food labels.  Switching to a low salt diet (about a year ago) was the most overwhelming experience I've had with this disease. I basically barely ate for 2-3 months. I shed weight like crazy. It wasn't good. 

However, slowly but surely, we got comfortable buying things at the grocery store.  A year later it's just standard now. Although every time we're in the frozen food section, I look at those pizzas longingly.

I could try and give suggestions, but frankly every individual has different issues that all surround needing low salt and low protein. It's probably tricky recommending something for someone else when I don't fully grasp their entire symptom set.
The things I monitor are salt, potassium, and protein intake. the rest doesn't matter (although I have always limited sugar intake).