Hyperparathyroidism diagnosis plz help!

[Tuna14]

Hi Everyone,

I had my kidney transplant 8months ago after being on dialysis for almost 6years. My dr. Just told me I have a severe hyperparathyroidism and that’s mainly because I was on dialysis for so long. He prescribed Cinacalcet to be taking once a day. My question is did anyone of you experienced this? Did it effect your transplanted kidney or bones?

Or any other information I’m a bit worried that’s I’m gonna start having new conditions due to my transplant or my dialysis.

I really would appreciate to hear your thought!

Thanks,

Fartun

[Alfredmynewkidney]

I needed a parathyroidectomy. Because of tertiary hyperparathyroidism. It is actually from the kidney disease not dialysis. The surgery was laprascopic and outpatient with little to no recovery time. It is very common with kidney disease.

[RhenDutchess123 in reply to Alfredmynewkidney]

I agree ...had a parathyroidectomy myself..removed 3 of the 4...that was over 6 years ago and have never had another problem with parathyroidism......Unless those are removed you will always have it and it will become worse, no medicine will stop it...

[blackkat2]

Hi, Tuna14. Overactive parathyroid is an ongoing issue for me since transplant and it is constantly monitored by my endocrinologist. (Most of my biggest post-transplant problems involve the endocrine system.) Calcium levels too high, beginnings of osteoporosis, etc. I take various meds for it and parathyroidectomy is an ever-present possibility. Goes with the territory for some of us.

[PuggyWuggy]

I have had a hyper parathyroid almost since I received my transplant 16 years ago. I take Cinacalcet (Sensipar) daily to control it. My doctor said that if my numbers get too high, then I will have to have a parathyroidectomy. It seems tto be a fairly simple surgery, so I don't know why they don't just do it.

[Tuna14]

Thank you all for taking the time to share your experiences and It helped me to have a better understanding of what to expect.

[Denise-80]

Hi Tuna 14 - My experience was similar to others. I had high parathyroid hormones before transplant (700 range). I was told that in some cases the levels go down after transplant, so they watched for a bit. I had 3 of 4 removed 3.5 years after transplant and now take calcium daily. One big concern for me was the scar (just being honest here) - however it is hardly visible and not noticeable. Best of luck to you.