Pth treatments

[Eyak1971]

Trying to take a survey of transplant patients like me who have high pth and what their doctors recommended. It is not as high as when I was on dialysis but still runs above normal. My doctor has never recommended medication or surgery. I guess due to my blood tests for calcium and I have exhibited no symptoms. I did have recurring kidney stones before going on pd. But thankfully none since. Did have hair loss but that is probably due to age and tacro. Please share what you did for high pth and what was the result.

[Sapphire187]

I’m not a transplant patient, but my PTH has been high for 1.5 years and my nephrologist just put me on calcitriol for it as it is now 604. When I was under 600 she said I didn’t need to be on medication for it. Hope that helps.

[Eyak1971 in reply to Sapphire187]

Very helpful. Thanks for sharing.

[RhenDutchess123]

I did surgery...had 3 of the 4 parathyroids removed...never had another problem with it in 8 years...but I am Dialysis not Transplant

[Eyak1971 in reply to RhenDutchess123]

Thanks for sharing. Gives me food for thought.

[drmind]

I'm not on dialysis nor do I have a transplant , but I had a high PTH a few years ago. It was worrisome because my primary did not know what to do. A new, very good nephologist i had put me on Vitamin D3 which I continue to take and titrated calcitriol over several months until the PTH was in the normal range. I believe my treatment plan also depended on my levels of calcium as well. I was told it's important to adjust the PTH level to prevent calcium being leached out of your bones. Hope this info helps. Good luck in getting yours adjusted.BTW there is a hospital in Tampa, Florida that does nothing but parathyroid removal as a way to treat the condition.

[Eyak1971 in reply to drmind]

Thanks for the info. Will investigate with my doctor.

[blackkat2]

Hi, Eyak1971. Mine was very high for a while after transplant, and very erratic. Had lots of imaging tests done, took cinecalcet for a while, even talked with a surgeon about removal, but everyone agreed we'd watch and wait and within about 3 years it was back to normal range and they took me off the cinecalcet. Still OK 7 years post.

[Eyak1971 in reply to blackkat2]

Thanks for your story. Will discuss with doctor.

[redpanda67]

Hi Eyak1971

Two months ago, my PTH level was 1726, and I am now 20 years post-transplant. I underwent a total parathyroidectomy with reimplantation of half a gland roughly two years after starting dialysis in 1997 due to severe hyperparathyroidism, which caused extreme bone and muscle pain and fatigue. Although my PTH levels decreased following dialysis and surgery, they remained significantly elevated, dropping to around 700+. Further removal of gland tissue was considered, but my poor health at the time, coupled with a diagnosis of thyroid cancer, complicated matters and halted any additional procedures.

After receiving my transplant in 2004, my PTH levels decreased slightly but remained well above normal, fluctuating between 750-1500 (normal is around 72). I was prescribed Sensipar and underwent multiple scans and tests, but there was no notable change in PTH levels over four years. Following a separate health event, I was taken off nearly all medications, including Sensipar, and even years later, my PTH levels remained about the same.

A perceptive nephrology fellow investigating the issue asked where I typically had my blood drawn, to which I pointed to my right arm. She said, “you mean just above where the implant is?" We initially thought this might be the key to the problem. Blood was drawn on the same day from my right arm above the gland and my left hand, but there was no difference in PTH levels. My endocrinologist even explored whether the ELISA test, which is used to measure the PTH, could be picking up an unusual antimouse antibody, given my history with pet rats and working with mice. However, this possibility was ruled out—there was no reactivity.

Currently, I am with my sixth transplant center. Each time I move, there is an initial concern, and my PTH levels are monitored for about a year, but no substantial action is taken. Despite persistently high PTH levels, I remain asymptomatic with normal blood calcium, bone density, and phosphorus levels. A few years ago, my current transplant center conducted additional phosphorus and enzyme tests, which revealed minor elevations but nothing alarming. I am regularly monitored by transplant, endocrinology, and nephrology teams, but none of them appear overly concerned at this stage.

Hope this helps.

Redpanda

[Eyak1971]

Thanks for sharing your courageous and often times perplexing story. I will take it to heart as i deal with my concern.

[ShyeLoverDoctor]

I took lithium for 20 years and it caused nodules on my parathyroid, making extra PTH. Lithium is known for doing this. When I was stage 3, I had 3.5 of the 4 glands removed. My PTH did not budge! My doctor said, This is disappointing! My response was, you’re telling me, I had an operation that failed. I’d been avoiding the operation for a couple of years, fearing a scar on my neck, but they cut into the folds of the neck and there is no visible scar. Normally this kind of parathyroid surgery has a 98% success rate. They tried me on sensipar, but it made me vomit within 10 minutes of taking the pill. Went back to the surgeon who said he refused to operate again to take more of the gland that was left, he feared I’d end up with calcium too low and I’d end up in the Emergency Department with convulsions. It’s really too bad they didn’t implant that remaining gland in my arm like some surgery centers do!!! Now, one year and 5 months post transplant,my PTH is 150. Upper limit of normal is 64. I can’t take vitamin D because it makes my calcium level shoot up. So I’m vitamin D deficient. Because of the high risk of skin cancer due to transplant drugs (and the fact that I had 3 melanomas even before starting the drugs), I must avoid sunlight. Such is life.

[Eyak1971 in reply to ShyeLoverDoctor]

Thanks for your honesty in sharing your story. Wishing you the best for Thanksgiving and beyond.

[Winner76]

I started having problems while on dialysis, tried to take cincelat but made me very nauseous. Had a parathyroidectomy a year after transplant . , left a quarter of gland . PTH levels are better but calcium is still high. Still can’t take cincalet but I find when I drink lots of water my calcium level improves.

[Eyak1971]

My research says that hydration and diet can help. Thanks for sharing. Wishing you well.