I have hypercalcemia resulting from hyperparathyroidism and was wondering if anyone has had parathyroid surgery. I have been considering surgery but would first love to know others experiences.
Has anyone had parathyroid surgery post ... - Kidney Transplant
Has anyone had parathyroid surgery post kidney transplant?
My doctor has prescribed cinacalcet for high PTH and it is working for me.
I did last summer (18 years post transplant). Go to a specialty surgeon that does these frequently—outcomes are near 100% successful when you do. I went to UCLA for mine. You’ll be sore at first and need to take calcium supplements, but really not a big deal. Don’t go to a general surgeon.
Thank you for that information
Were you on medication for hypercalcemia before surgery? How many glands did they remove?
No meds for hypercalcemia prior. I pushed to have the surgery fairly quickly after diagnosis. They removed 3/4, which is more than typical.
I had 3 parathyroid glands removed in 2018 because I had osteoporosis and my parathyroid levels were high. My calcium level is normal now and I eat cheese every day to keep it from going too low.
There is an excellent parathyroid clinic at Tampa General Hospital. Their website is parathyroid.com. Consult with them, they are wonderful. I've had 2 parathyroidectomies, 35 yrs apart. The second surgery was a breeze, outpatient, quick, relatively painless. If you need the surgery, you will feel much, much better afterward.
Both were before my transplant, the latest one was in 2016. I was transplanted 7 months ago.
I get my parathyroid checked periodically. I am the one through my research first brought it up to my nephrologist. It’s funny because tonight I met a nurse who had two removed... will definitely ask for another check on my next set of labs
Yes! Had parathyroidectomy in 2014, after first transplant in 1998. Very straightforward surgery, no pain (.seriously, and I am a wimp!), scar is very fine and is in one of those two natural creases in the neck, so no-one can tell. Back to work a week later- this was around Halloween and I had no covering on my neck scar!
How many glands were removed?
They thought that 2 had been removed, but one turned out to be a lymph node - so just one gland was removed. My understanding is that the surgeon has to look around to find, and remove, enlarged glands. My sister had 3 removed around the same time, but she is not a transplant recipient.
Does she need to supplement with calcium?
No, neither of us do. In each case, the parathyroidectomy brought serum calcium into the correct range.
I was on track for parathyroid surgery before transplant but when kidney transplant came up that was more important. Since transplant, I have not had any problems.
I had pre-transplant parathyroid surgery, which went well and slowed down damage to my original kidneys by years. Of the four parathyroids , one needed to be removed. I am a bit confused by your situation. If your parathyroid(s) was bad, wouldn’t it still be pumping too much calcium into your body, irrespective of transplant?
Thanks for replying