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Author Topic: High PTH?  (Read 705 times)
Ataraxia 242
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« on: August 19, 2018, 08:31:19 AM »

Hey, does anyone have a really High PTH? Mine is over 2400, it's been high for years. I tried to correct it by taking 270 of Sensipar, but that lowered my Calcium..My Dr. said we are going to be getting a new med put directly into the machine..Has anyone had this new medicine yet?? Any side effects? I'm desperate bc I'm scared of having to get a parathyroidectomy..
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GA_DAWG
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« Reply #1 on: August 19, 2018, 08:57:04 AM »

This is the condition I have the most problem with month after month. We will get it corrected for a few months and then it will get out of kilter again. I know it balances calcium and phosphorus, and that it is a hormone secreted in order to cause the kidneys to balance them out. If your kidneys do not work, obviously they do not perform this act very well. The first night I was in the hospital, I had a doctor come by to see me with my test results. As best I can remember, because I was in pretty bad shape, he told me the phosphorus level was so high, and likely had been for a while due to untreated HBP, that there was a good chance I had lost a great deal of calcium from my bones and from my teeth and stood a veey good chance of losing my teeth. This did indeed prove to be the case as my teeth had become so weak they broke just chewing food. It is important that they get this imbalance fixed as soon as possible in order to protect your bones and teeth, as well as your veins and arteries. I get Hectorall, not sure of the speling, for this through the machine.












Sp mod Cas
« Last Edit: August 20, 2018, 05:58:29 AM by cassandra » Logged
lulu836
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« Reply #2 on: August 19, 2018, 11:03:59 AM »

My clinic gives Sensipar to the ones that need it.  Sensipar started out being a VERY expensive pill but has since become part of the Medicare ESRD package.  I'm not sure what the solution is if not on Medicare but prior to them stepping in I was receiving Sensipar through a grant.  Don't know the name of the grant but your clinic should be able to work it out for you.  My PTH was well under control within 3 months.

Edited to say:  I did not interpret the first post correctly so just DISREGARD IT  :banghead; :banghead; :banghead; :banghead;
« Last Edit: August 19, 2018, 11:13:01 AM by lulu836 » Logged

Of all the things I've lost, I miss my kidneys the most.
LorinnPKD
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« Reply #3 on: August 19, 2018, 12:25:24 PM »

Is it Parsabiv?

https://www.rxlist.com/parsabiv-side-effects-drug-center.htm

It's supposed to be stronger than sensipar.  My renal dietician says that it worked well for a patient whose PTH was extremely elevated.  I haven't tried it yet bc my sensipar (boosted with hectorol in the line) seems to be working, although my calcium drops to 7.9.  My PTH is lower than yours for now.

If it does come to the parathyroidectomy, I know it sounds scary but it sounds a lot worse than it actually is.  I've had two family members go through it so far and both were outpatient.  One healed very quickly, the other had some soreness for a couple of weeks.  Obviously, I hope surgery can be avoided, but it was presented to me as an alternative when I was having trouble tolerating the sensipar.

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iolaire
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« Reply #4 on: August 19, 2018, 12:52:05 PM »

If it does come to the parathyroidectomy, I know it sounds scary but it sounds a lot worse than it actually is.  I've had two family members go through it so far and both were outpatient.  One healed very quickly, the other had some soreness for a couple of weeks.  Obviously, I hope surgery can be avoided, but it was presented to me as an alternative when I was having trouble tolerating the sensipar.

I just had the surgery leaving 1.5 of 4 glands and it was easy for me. One the PTH scale In my labs my level was about twice the high level and post surgery it was just above high. After getting home from the surgery I felt it could have been outpatient but they wanted to keep me overnight incase my calcium tanked and I needed iv calcium. It sounded like people with uncontrolled PTH for years are more at risk of dangerous low calcium. But to be safe I was in overnight with a calcium check every six hours. Within four hours of the surgery I was fine with Tylenol.
http://ihatedialysis.com/forum/index.php?topic=34720.0
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Aaisha.Dar
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« Reply #5 on: August 19, 2018, 07:31:49 PM »

I got my parathyroids out when I was 19 so 3 years back. Let me tell you it was not scary one bit. They obviously put you to sleep and afterwards give you pain medicine which makes you not feel a thing. Honestly, getting them out is the best thing you can do for yourself. It is extremely hard to stay clear from phosphorus. Sensupsr can be a pain in the butt with the side effects. Really try and think about getting it done you'll be happy you did.
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Charlie B53
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« Reply #6 on: August 20, 2018, 07:17:57 PM »


My first year on Hemo my pTh ran a bit over 1200.  Dr had me on 3 types of Vit D plus Calcium.  When that didn't have much effect he started increasing my Sensipar.

Recently my pTh has lower enough Dr has decreased my Sensipar.  Waiting for my next labs.

Still taking all the Vit D's but dropped the Calcium.
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PeterPaul
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« Reply #7 on: August 22, 2018, 03:40:19 PM »

I'm from Europe. We have an intravenous medication called Zemplar ( paricalcitol ), which drasticly lowered my PTH, I'm on dialysis for 13 years now and before I started to get this medication, mine was 1000+ , now it's 144. I got 3 times at the end of dialysis, it is 5 microgramms.
And what I really learned about PTH is that it connects to your phosphate level, if your phosphate is normal, your PTH will not increase as much if your phoshpate is high.
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iolaire
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« Reply #8 on: August 22, 2018, 04:34:54 PM »

I'm from Europe. We have an intravenous medication called Zemplar ( paricalcitol ), which drasticly lowered my PTH, I'm on dialysis for 13 years now and before I started to get this medication, mine was 1000+ , now it's 144. I got 3 times at the end of dialysis, it is 5 microgramms.
And what I really learned about PTH is that it connects to your phosphate level, if your phosphate is normal, your PTH will not increase as much if your phoshpate is high.
Thatís good that Zemplar is working for you.

I was on zemplar pills prior to dialysis and I think I received it IV at dialysis and at least on dialysis i s has high PTH.   My phosphorus was not high.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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