PTH rising

[TomMilds]

Hallo everyone,

In last times I noticed that my level of PTH is rising despite the therapy. I use Cinacalcet + Osvaren every day and it worked good untill now. In my last numbers PTH is 919 picogramms/ml that is on 100 higher than 3 months ago. Maybe there is more powerful medications against PTH?

[RhenDutchess123]

There is not a cure for Hyper Parathyroidism...you have to have them removed . ..There are 4 small glands that sit behind your thyroid...they become encouraged with hormone and cause havock with your body. Go to Norman Pharathyroid and read about it...The Clinic is located in Tampa Fl..they removed 3 of my 4 Parathyroids 8 years ago...Best thing I ever did...

[TomMilds in reply to RhenDutchess123]

thank you for respond.

Can I ask you how it feels after surgery? Symptoms of hyper patateroidism totally disappeared after removing ? The PTH getting low to numbers of healthy person?

[RhenDutchess123 in reply to TomMilds]

I felt great after surgery...it was a 30 minute procedure with just a bandaid covering it..I can't even see a scar..My PTH was 400 before surgery and was 54 PTH after and has remained there..my bones no longer ache and my Husbsnd says I am not as bitchy...lol...I bet at 900 PTH you are miserable

[Goosebay]

This is linked to toxin build up as ESRD progresses. Dialysis can only remove a certain amount of the main cause and that is urea. So control diet to reduce urea levels and something to reduce urea absorption. In my opinion and I'm not a doctor, take activated charcoal. Research the benefits of it. It may be your solution too as it has benefitted me. Some people are able to use activated charcoal and reduce Dialysis time.

[drmind]

As i wrote before, my nephrologist has me taking Vitamin D3 daily and when my PTH was high a few years ago, I also took calcitriol daily which he titrated over a period of months until the PTH was normal. Now, I only take Vitamin D3 daily and PTH is in normal range. Good luck with your problem.

[TomMilds in reply to drmind]

I tried to use vitamin D3 and it led only to high levels of phosphorus.

[QueenGee in reply to drmind]

Did you know that Calitrol is an active form of vitamin D.? It is what is helping. Taking over--the-counter vitamin has no value to us wit CKD.

[Learning_as_we_go]

Phosphorus and calcium levels need to remain balanced in order to maintain a healthy PTH. In your body, calcium and phosphorous react in opposite ways: As your blood calcium levels rise, phosphate levels drop — and vice versa.

The Cincalcet is being used to lower the amount of calcium in your blood, but that means your phosphorus might also be rising. One cause for a high PTH is high blood phosphorus. If you don’t mind my asking, what is your phosphorus level at on the Osvaren? Has it been steadily rising over the past few months or is it within range?

Another thing to keep in mind is that the two main ingredients in Osvaren are calcium and magnesium. If there is too much calcium in your blood, maybe you could talk to your doctor about switching to a non-calcium-based phosphate binder, like Aurxyia or Velphoro.

[TomMilds in reply to Learning_as_we_go]

Thank you for respond.

My phosphorous level was normal for long time I used Osvaren. But in last month it raised significantly. Current number is 2,23 mmol/l, and that's higher on 0,4 mmol/l. Calcium level is 2,11 mmol/l. Osvaren works for me more effectively than Velphoro or sevelamer-contained binders.

[Learning_as_we_go in reply to TomMilds]

The elevated phosphorus will need to be corrected, so your doctor may end up suggesting other phosphate binders for you to try if the Osvaren isn’t lowering it enough. Sevelamer and Fosrenol didn’t work for my mom either, but she has been doing well on Auryxia. Now she uses Auryxia and Cinacalcet to keep everything in check, and occasionally Calcitriol if the Cinacalcet lowers her calcium a little too much. It’s all about finding that delicate balance between the calcium and phosphorus.

Finding what works takes a lot of trial and error, and it can be frustrating when something that worked well for so long suddenly stops working. However, it will get better if you take it one step at a time.

I hope the issue is resolved soon. Best of luck to you!

[TomMilds in reply to Learning_as_we_go]

Thank's for your kind words. As somebody said on this forum "CKD is like the fight against the multiheaded dragon - once you cut off one head, and appears another". We just keep trying.