PTH # and other#'s


#1

Hi
My June #'s came in and everything was great ,but my Pth was at 1800. The problem is is that this # seems to go up and down. I asked what my last # were and was told 4. Since I’ve started dialysis (12/01/05) this one # seems to go up and down, then stay on good side. I have not done anything that I can think of (food wise etc) that would acount for this. Can any one help tell me what all the #'s means as far , will you have problems in a week or two week a month or so on? My thinking is that unless the #'s are way out of range, (like my PTH) most # if off by a .5 or a whole # Ex. 3.5 to 5.5 and my might go 6.5. Will not hurt you in week or two and that I need to look at long terms things. Not that I should not work on my #'s but I should not panic .

The way it was told to me it that the test might be off.

bobeleanor :?:


#2

I asked what my last # were and was told 4.

There is no way that your previous PTH number could possibly be 4, if the current one is 1800. If I were you, I would be asking which PTH assay was used (the target range varies with the exact test used).

• Are you on some form of vitamin D replacement? (i.e., Zemplar®, Hectorol®…)
• What are your calcium and phosporus levels, and your calcium times phosphorus product?
• Has your doctor started you on Sensipar®?

A PTH level that high either requires aggressive medical management (some doctors are too timid about prescribing enough medication to bring it down) or surgery to remove some or all of your PTH glands.


#3

Hi

I know it sounds out there ,but I’m just saying what I was told. Like I said this # has been up and down since I started.

I’ve looked at my # for pth intact from 4/03/06 4 3/16/06 298 2/16/06 276

pth bio intact from 1/17/06 1137 12/03/05 1232

calcum corrected from4/03/06 10.3 3/16 /06 7.3 2/28/06 5.0

phoshorus 4/5/06 7.4 3/16/06 7.3 2/28/06 5.0 Iwill ask on assay.

bobeleanor :?:


#4

It might be best if you could see your lab test results and get a copy to keep, rather than having someone tell you–they may be reading off the wrong line, and since you’re getting the info second hand, you can’t verify that it’s right.

Your Dec/Jan and Feb/April PTH numbers are so different that I suspect your clinic switched assays–this is something to ask. Then your most recent result–over 1800–is more in the general range of the Dec/Jan numbers, which makes me wonder if they switched back again???

If your April calcium level is 10.3 and your phosphorus level is 7.4, then your calcium x phosphorus product would be 76.22–too high to risk giving you vitamin D. So, if I had to guess, I’d say that your calcium and phosphorus numbers were rising, they stopped your vitamin D to try to prevent blood vessel calcification or extraskeletal calcification–and then without treatment, your PTH started soaring. But that’s only a guess and I’m not a doctor. You need to ask your team about this. Often the dietitian is the one who gives you your lab tests and tells you what they mean, so you might set up an appointment with him/her or your nephrologist.


#5

I dont think food has any effect on PTH, so its nothing your doing. With a level that high you probly need those suckers out!


#6

Food doesn’t have any effect on PTH, Amber, but it does affect calcium and phosphorus–and if those are too high, they can’t give vitamin D to correct the PTH. So, the PTH can rise much too high and the diet is indirectly responsible.


#7

Amber, What Dori described happened to me recently. Both my calcium and phos. were just over the normal line but they cut my Hectoral and put me on Sensipar. I’m now back under the cut-off line so Hectorol was restarted, but I’m still on Sensipar. Pth had been previously in the 500’s. You have to keep particular watch on foods that contain both high phos and calcium, namely dairy products. They have the undesirable effect of raising both phos. and calcium, and when it shows up in labs Vit. D preps. will be cut. Lin.


#8

Once PTH has been very high for sometime those PTH glands will become the size of a golf ball or even bigger. Such cases like this is resolved by removing most of the PTH glands by surgery. After that managing calcium and phosphorous will be easier without the need of those medications.


#9

Hi

How much over the line do the # have to be?

And while I was in center and had this problem , my front area was sore and very large. But the dr. and staff all seem to care less.

What gives with have them taken out.?

bobeeleanor :?:


#10

#11

With adynamic bone disease, the pth is higher than normal range, but neph does not advise taking out pth. He says bone turnover will increase in time (as much as 2 yrs or more). Not clear on what this means.


#12

Hi Gus and everyone

Here are some of my #'s, I will go to center next and get real papers on # with what the new are and what the one in past were.

I’ve looked at my # for pth intact from 4/03/06 4 3/16/06 298 2/16/06 276 from 6/07/06 was told 1800

pth bio intact from 1/17/06 1137 12/03/05 1232

calcum corrected from4/03/06 10.3 3/16 /06 7.3 2/28/06 5.0

phoshorus 4/5/06 7.4 3/16/06 7.3 2/28/06 5.0 Iwill ask on assay.

I feel great and I’m working both in house and lawn shopping etc.
When Would any of this start to take a toll? And what would start to feel like?

bobeleanor :?:


#13

Well, as long as your legs don’t hurt and you can walk okay then don’t worry…your doing just fine. Just keep track of your calcium and phosphorous levels…talk to dietician and ask her these questions about what is normal for you…


#14

Here’s a booklet on renal bone disease (osteodystrophy). The problem is that many symptoms don’t occur until the disease is far advanced so you do not let this go. Ask the administrator of your clinic if the lab assay has changed from month-to-month and ask your doctor and dietitian what your labs results mean. If they say it’s a lab error, ask to have the labs repeated.
http://kidney.niddk.nih.gov/kudiseases/pubs/renalosteodystrophy/index.htm

Here’s information on the PTH test and what it means, when it’s best to draw the blood for the test, and what medicines may affect the results:
http://www.labtestsonline.org/understanding/analytes/pth/test.html


#15

Gus, What would the thyroid and parathyroids have to do with each other? I understand them to be two completely different things so your thyroid pill is for thyroid, not parathyroids. Lin.


#16

There’s nothing between each for those of you who have their thyroids okay, unfortunately they found cancerous lympnodes on mine…so they had to remove it…However, its uncertain why the thyroid was turning cancerous…so seems that the Hyperparathyroidism had to do with it…


#17

What a timely topic. I have been fighting calcium/phosphorus and pth for some months now. Although I eat essentially no calcium I fight high calcium. So for months I was off calcitriol. I started Sensipar which successfully lowered my calcium enough but my PTH continued to climb, then due to a muscle weakness problem they stopped everything and my PTH is now over 2000 (was 1700 on the calcitriol and sensipar). I just restarted Sensipar (60mg) and calcitrio 5x a week. They will repeat my PTH next week and calcium.

I know my diet isn’t causing the high calcium, I know it must be the PTH, but my neph, as usual, doesn’t think there is really a problem. For months I have been complaining about exhaustion, rapid heart rate (again), weakness quickly when trying to do anything, horrible stomach acid pains that max strength pepcid a/c doesn’t even touch, recurrance of awful rls, back aches and just general malaise. I looked up symptoms of hyperparathyroidism and this fits, however, my neph says that unless I experience actual bone pain even when resting that it isn’t my pth.

I also have a reasonably high cortisol level (am of 39) which my doctor claims is normal, yet according to research anything above 23 "warrants further study). Cushings syndrome also fits my symptoms.

I have to be honest that I am getting tired of daily dialysis and still feeling like crap and having to carefully watch my diet. My unit is mystified and I am so frustrated.

So those of you with hyperparathroids, did your neph deal with this or did they send you to an endocrinologist. I am thinking of asking firmly for a referral, which will make my neph angry, but…

Opinions???

Cathy
home hemo 9/04


#18

Hi Cathy
Sorry to hear things aren’t going as well as you hoped. Would you consider telling your Neph a “porky” and saying you are experiencing bone pain (silly suggestion ??)


#19

Cathy, they waited till my bones were hurting bad…where I barely was able to walk…was sent immediately to surgeon…


#20

You can ask your nephrologist for a referral to an endocrinologist, but do you really need to ask him/her for a referral? Can’t you choose to go to an endocrinologist on your own? I’d probably do that since everyone seems stumped by your lab results and no one is recommending any further testing or treatment.

Read this:
http://www.mayoclinic.com/health/hypercalcemia/AN00342

You can watch a slide presentation, see x-rays, and watch a hyperparathyroid surgery as well as hear the doctor answer questions at this site:
http://www.nlm.nih.gov/cgi/medlineplus/leavemedplus.pl?theURL=http%3A%2F%2Fwww.or-live.com%2Fdistributors%2FNLM%2Frnh.cfm%3Fid%3D184

Here’s a database of endocrinologists:
http://www.aace.com/resources/memsearch.php