Hyperparathyroidism caused osteoporosis--now what treatment?

@sebutler
I had hyperparathyroidism In 2006, and 2007.
My blood calcium was up to 11.1 and I was feeling horrible. I had the tumor removed in 2008. I felt better in 2 days!

My bones paid the price of course. Back then all I could get was a nasal spray, Calcitonin. Doctor wanted me to try Prolia, but my insurance wouldn’t cover it.
Eventually my bones improved for a while and I was classified as having osteopenia.
Now, after battling several autoimmune diseases, I have osteoporosis. I get Prolia shots twice a year with no problems at all.

I also have hyperparathyroidism. Mine is secondary due to kidney issues. Subsequent to over a year on dialysis (which was really bad for my bones) I was able to get a kidney transplant. Now, two years post transplant, my PTH is still high, but not as bad as before. I did lose bone mass before and during dialysis, but now it is holding steady. I attribute it to weight bearing exercise with a trainer 3x per week and healthy eating. May I ask at around what level your PTH was for those years it was high?

Mine was primary hyperparathyroidism. My PTH kept climbing over the years, reaching close to 80. But I'm wondering now if I need to keep taking Tymlos and start a bisphosphanate -- or whether now that my hyperparathyroidism is corrected (now measuring in the 30s) I can just let my normal body take over.

Well, mine tested November 2024 was 113, before then June 84, February 103, October 2023 74, and May 2023 it was 90. I am wondering if I should see an endocrinologist as my primary does not seem to think it is an issue??? As you said yours was in the 80's and it was an issue for you.

I currently have osteopenia, and I refuse to take any of the bone pharmaceuticals as most all make your bones brittle. I believe Tymlos may be different as it is an anabolic so it is supposed to build bone. My gynecologist prescribed testosterone cream as it increases bone formation by increasing the formation of osteoblasts which are the bone builders. Perhaps you could inquire about that method.

I have stage 4 renal failure, no dialysis. My nephrologist wants my PTH slightly elevated (70-110 for stage 4) to allow for normal bone turnover. I have been on a low dose of Calcitriol (active vitamin D) for years. It has kept the PTH within the desired range but has not helped in preventing decreasing bone density.

As I read the 4 notifications I've received, I am astonished! My question would be to the Cleveland Clinic... Why isn't there a someone sending up red flags warning doctors not to prescribe osteoporsis medication without first testing the patient with a PTH test? Three months after beginning any osteoporsis meds, see your Dentist. When I made an appt with my dentist, I told him I was on Fosamax. He told me to stop taking it 3 months before my visit with him. What does he and other physicians know about this drug? What have they seen and not reported? IT LONG PAST TIME FOR ALL PHYSICIANS TO STEP UP TO THE PLATE & 1) REPORTING THE NEGATIVE SIDE OF OSTEOPORSIS MEDICATION & 2) WARNING WOMEN WHO R APPROACHING MENO TO BEGIN BUILDING BONE.

diannemr3, Are you taking Vitamin D or Vitamin D3? How many IU's of vit. D or vit. D3 are you taking? When Dr. orders blood tests, do you take previous tests and compare them? If not, do so. Don't leave it up to the dr.

Do you compare your dexa scans? I compared mine. My dexa scan was .2 higher on my left femur & my right arm putting me into the osteoporsis range. Do you go to the same Lab for blood tests & the same imaging place for your Dexa scans? This is important. The scan can be off if you have body fat like I do. If you are thin or within the suggested BMI for your height, then the scan may be accurate.

There are a lot of factors of a dexa scan that make me shake my head: age of the machine, the operator, if you wiggle while the scan is in progress, if you have a knee implant etc.

None of the members of my family ever had a broken bone. I am the only one in my family with scoliosis which can also make me a candidate for osteoporsis. I follow a strict Mediterranean diet. Why am I overweight. My knees are in bad shape. I am scheduled for knee surgery Feb. 2025. Walking has always been my thing. This is how I lose weight and keep it off.

I go to therapy for incontinence which I am thrilled to say has given me excertises to stop the drip!! I've read several entries about weight bearing exercises. When I return to therapy, Jan 2025, I will ask the therapist about the weight bearing exercises.

Unfortunately many automaticslly just prescribe a drug to alleviate a symptom versus diagnose the cause to correct it.

This is why I have chosen to change my Primary Care Physician to an Internist. One size does not fit all, isn't a solution, it's a band-aid for laziness; can't be bothered doing due diligence. This is why I have become my own advocate. Even then, my PCP is blowing smoke in my ears.

Firefly, thanks, this is good information. I take 2000 IU Vitamin D3 daily in addition to calcitriol (0.25 mcg) twice weekly, and yes, I always compare labs. Quest labs uses historical graphs on their website to make comparison tracking easy.