Hello, I’m post transplant 2 years and I currently have a high number for my pth glads. I was put on sensipar,didn’t help much at all and was taken off due to one of the side effects.
Can someone recommend anything to help lower or any medication. It’s so high that the doctors are suggesting surgery to remove and I’m VERY much afraid
I have PKD and went through the same issue. I took Sensipar, which made me very sick. I gave in, and had surgery at UCLA. They removed 3 3/4 out of the 4 PT glands. My PTH is now under control. Surgery has risks, but I'm glad I chose this path, considering the side effects of Sensipar and the risks of doing nothing. I'm pre-transplant.
Thank you so much for your response. How was your surgery experience? Is there anything I should be concerned about ?
For me, it was routine. I was in the hospital for a few days being monitored. I left the hospital with very low PTH, but after a couple of weeks, it came back to normal ranges. My numbers were getting over 1,000 before surgery. The cut was very small and I used scar gel. After a couple of months, my scar was mostly gone. I have a very faint line about 1 inch long that I know where it is, but it is not really noticeable. The reason is because I have darker skin and the scar is a bit whiter. Since everyone is different, I suggest you discuss all details and concerns with the surgeon. Sensipar was a horrible experience for me, and my understanding is that doing nothing has risks as well. Best wishes.
Hi - I had the same surgery as dciacchella…3 3/4 of my parathyroid glands removed. I had the surgery ~4 years after transplant. I had the surgery in 2018. I waited, hoping my pth levels would go down without it. I have a very thin, very faint, 2.5 inch line on my neck…it’s not noticeable. I do have to take calcium daily now though, but I’d rather take a calcium supplement than sensipar.
How high is your pth level? Has it dropped at all after transplant?
Hi, My levels as of a few months ago were 477. It has dropped but not by much/enough. How was the surgery? Anything I should be concerned about? I’m so nervous
I also had the same surgery in April this year. 3 1/2 taken out.
My surgeon was awesome and the procedure was very easy. Besides my transplant 8 years ago, I’ve had other surgeries so to me it’s become routine. Besides, it feels like after having a transplant, all other surgeries are minor! ☺️
I took calcium supplements after but off them now. My PTH and calcium levels are normal.
Mine is also running high but my doctor is not concerned as long as all my other levels remain in check like calcium, phosphorus, etc. How high is yours?
hey there!
Same situation, I opted to do to the surgery also. Honestly it was pretty rough for me. I had it done when i was about 26 yrs old. After surgery you will have "hungry bone syndrome", i guess my bones were hungry!! Lol i could not get my calcium up to be discharged after for a week, then after i returned home i still struggled to get my calcium up. It got so low, I went into depression. (Low calcium will do that) eventually I ended up having a seizure due to the low calcium. I fell at work, busted my eyebrow open and had a black eye. 😵💫 BUT now im 33, i definitely could have taken the tums, or calcium the drs gave me to keep it up. The scar isnt too bad, and the pain afterwards was not bad at all. Good luck!
hi Jennypenny89 - Do you mind me asking how low your calcium got when it become an issue for you? I take 2000 mg of calcium per day and cannot get my calcium much above 8. I take vit D too. Doctors are aware but I know I have to be my on advocate.
the lowest it got was 0.59, i felt off for a while (dizzy, tingling fingers) i shoudlve contacted my drs sooner before i had a seizure.
I also had the Surgery in 2016...best thing I ever did...removed 3 Parathyroids ..my PTH sits at a nice 52 and Calcium a perfect 9.5.. .I will mention to do your Research on WHO you let do this !!
Find a surgeon that does many of these surgeries. I don't know where you are but the docs at Tampa General are some of the best.
I had my high PTH reduced slowly by my nephrologist titrating doses of calcitriol and vitamin D. It took a few months but levels are all in normal range now. Good luck with your surgery. My PTH was high but not as high as those reported so i guess I didnt need surgery.
i had to have the surgery. It was quick with no downtime except for the day of the surgery. It is very common with kidney disease.
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