Post Parathryoidectomy medical care for osteoporosis

I am 69 years old. I had a parathyroidectomy in August 2025. My Primary doctor misdiagnosed my disease for over 8 years. She didn’t order a follow up bone scan since 2015, she ignored hypercalcemia and ignored an ABNORMAL parathyroid result. My Ob/Gyn ordered a bone scan that eventually lead to the discovery of my diseased parathyroid. I’m concerned about the permanent damage to my joints ligaments discs and tendons.

@avalon3271 I'm so sorry to hear it took so long for a doctor to discover the problem with your parathyroid. I hope the surgery is helping your bones. I don't know a lot about hyperparathryoid conditions - are you saying they can damage joints, ligaments, discs, and tendons?

@karyn23
Since I had a misdiagnosis of 8 years, yes I have permanent damage to my joints, ligaments, discs and cartilage. We all have a muscular/Skeletal system which includes muscles, bones, ligaments, tendons and cartilages. They are all interdependent for nutrition and hydration. An endocrinologist said that severe primary hyperparathyroidism does as much damage as smoking a pack of cigarettes a day.

@avalon3271
My skeleton was severely damaged. I had a T score of -3.1 in March of 2025. I will have a follow up bone scan in September 2026. My doctor also discouraged a follow up bone scan after being diagnosed with osteopenia in 2015 because she didn’t believe in the meds given by Endocrinologists. My Ob/Gyn said she could not disagree with her more and ordered my bone scan. She is the one who caught my severe primary hyperparathyroidism

@avalon3271
My PCP also ignored high calcium since 2018. The new standard for being referred to an Endocrinologist is anyone over the age of 35 with a calcium level of 10.0 likely has an adenoma on their thyroid. A normal parathyroid should weigh 34 mgs. Mine weighed 280 mgs. Per my surgeon. My calcium was 10.3 in 2018. My primary care physician told me to cut my dairy by 20%. Terrible doctor.

@avalon3271
High calcium is the #1 indicator of a diseased parathyroid. When calcium goes up a NORMAL parathyroid should be LOW.
Anything above LOW is abnormal.

Also, high calcium is worse systemically for your body than high cholesterol.
My doctor ignored my high calcium and only paid attention to my cholesterol which was only 200 which is borderline

Hello,
I had 2.5 parathyroids removed in 2021 after years of high blood calcium, high urine calcium, kidney stones, osteoporosis and feeling tired. I was 69 at the time. I saw my pcp every year plus I saw a nephrologist 2 times a year due to the kidney stones and calcium in my urine. My blood calcium was between 10.0 and 10.3 for years. Yet no one mentioned hyper parathyroids. My pcp finally sent me to an endocrinologist and he said I just needed more vitamin D. 🫤Finally 3 years later I saw a new nephrologist who said he believed I had hyperparathroids. When I saw the surgeon who was going to remove the bad parathyroids he said he believed I had this for 15 years! My Dexa score in my spine was -3.5 by the time I had the surgery. I was trying to decide what bone med to go on, not liking any of them, and believing that the surgery would improve my bone scores, when I found out I had spinal compression fractures and breast cancer. That was a double whammy. By that time the surgery had helped my spine Dexa score to go up to -3.3. So removing the bad parathyroids helped the osteoporosis a little. I ended up going to Mayo in Rochester after all of this, for the breast cancer and they addressed my osteoporosis and spinal compression fractures too. I was put on Tamoxifen, which if you are past menopause helps your bones, plus Zometa (Zoledronic acid) infusions, the same drug as Reclast. They are both Zoledronic acid. Zometa is a 4% version of Zoledronic acid and given thru infusion 2 times a year for 3 years, to women who have had breast cancer and have osteoporosis. Reclast is a 5% version of Zoledronic acid, and it is an infusion given to women once a year who have osteoporosis. I have now finished my 3 years (6 infusions) of Zometa and I had a Dexa scan on 4/26 and my spine has improved to -2.6. Yay! My advice after all of this is not to be afraid of going on bone building drugs. I wish I had gone on them sooner. Spinal compression fractures are something no one wants. Very painful and they limit you in many ways. Best of luck to you deciding what to do and what bone drug to go on. Best wishes for your health ❤️🌸

@ssmab Oh my goodness, what a lot you've had to deal with! I'm so sorry.

Yay!!! for the great improvement in your BMD - how awesome and wonderful. It's so good to hear success stories. I don't think you should kick yourself for not going on the med sooner. It's very difficult to parse out what to do. There are endocrinologists who believe that the bone meds will not help someone with hyperparathyroidism - the bad glands must be removed first. There are also drs who like to wait a year or even two after the surgery before starting bone meds. The thinking is to see if the newly normal-functioning parathyroid will reverse the osteoporosis. I heard an endocrinologist in CA hypothesize that it's best to postpone bisphosphonate use the first two years post-surgery. His thought is that the med may blunt the parathyroid's return to normal activity. (I haven't heard anyone else suggest this.)

It's hard to know what is best. I've seen many drs in the 6 months since surgery, and it seems clear that everyone still has much to learn.

@avalon3271 It sounds as if you have a great ob/gyn. Thank goodness for the good docs. Thank you also for all of the information about hyperparathyroidism. So appreciated. My best wishes for good health for you.