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 need some input with this from anyone who can chime in. I was diagnosed with hypercalcemia and severe osteoporosis. The osteoporosis was a diagnosis in 2022/23, and then Hypercalcemia in 2023/24. My labs kept showing a high rate of calcium in the blood, and after multiple labs, I begged my doctor to do more extensive scans, testing. He ordered scans for parathyroid, thyroid, kidney, stomach, heart. All the xrays or scans came back what he called normal, however, my labs tell a different story. Everything in a comprehensive lab testing is off, way off and has been for over, 2years. How if everything is normal on a scan, but the labs aren't, where do I go from here? I have a doctor that has to be pushed in the right direction, or he will do nothing. I have to advocate for my health because he will not take the time to research and do the right things. He is an Internist. Here where I live, there are a shortage of Rheumatologists and so the waiting list is over a year, its like almost 2 years. So, from the Reclast infusion, I had a severe reaction to biophosphinates. Unfortunately, that will not be an option for me because of that, I am still reeling from side effects. How do I find out if this is a parathyroid issue? What are the symptoms, etc? Or something else/ I am frustrated because, I am not getting answers, and my doctor is not proactive, and my health is severely declining. I joined these forums to find other options and knowledge that I can utilize to make informed decisions. Is there correlations between osteoporosis, hypercalcemia, that are really caused by other issues, or are they one in the same?

I need some input with this from anyone who can chime in. I was diagnosed with hypercalcemia and severe osteoporosis. The osteoporosis was a diagnosis in 2022/23, and then Hypercalcemia in 2023/24. My labs kept showing a high rate of calcium in the blood, and after multiple labs, I begged my doctor to do more extensive scans, testing. He ordered scans for parathyroid, thyroid, kidney, stomach, heart. All the xrays or scans came back what he called normal, however, my labs tell a different story. Everything in a comprehensive lab testing is off, way off and has been for over, 2years. How if everything is normal on a scan, but the labs aren't, where do I go from here? I have a doctor that has to be pushed in the right direction, or he will do nothing. I have to advocate for my health because he will not take the time to research and do the right things. He is an Internist. Here where I live, there are a shortage of Rheumatologists and so the waiting list is over a year, its like almost 2 years. So, from the Reclast infusion, I had a severe reaction to biophosphinates. Unfortunately, that will not be an option for me because of that, I am still reeling from side effects. How do I find out if this is a parathyroid issue? What are the symptoms, etc? Or something else/ I am frustrated because, I am not getting answers, and my doctor is not proactive, and my health is severely declining. I joined these forums to find other options and knowledge that I can utilize to make informed decisions. Is there correlations between osteoporosis, hypercalcemia, that are really caused by other issues, or are they one in the same?

I need some input with this from anyone who can chime in. I was diagnosed with hypercalcemia and severe osteoporosis. The osteoporosis was a diagnosis in 2022/23, and then Hypercalcemia in 2023/24. My labs kept showing a high rate of calcium in the blood, and after multiple labs, I begged my doctor to do more extensive scans, testing. He ordered scans for parathyroid, thyroid, kidney, stomach, heart. All the xrays or scans came back what he called normal, however, my labs tell a different story. Everything in a comprehensive lab testing is off, way off and has been for over, 2years. How if everything is normal on a scan, but the labs aren't, where do I go from here? I have a doctor that has to be pushed in the right direction, or he will do nothing. I have to advocate for my health because he will not take the time to research and do the right things. He is an Internist. Here where I live, there are a shortage of Rheumatologists and so the waiting list is over a year, its like almost 2 years. So, from the Reclast infusion, I had a severe reaction to biophosphinates. Unfortunately, that will not be an option for me because of that, I am still reeling from side effects. How do I find out if this is a parathyroid issue? What are the symptoms, etc? Or something else/ I am frustrated because, I am not getting answers, and my doctor is not proactive, and my health is severely declining. I joined these forums to find other options and knowledge that I can utilize to make informed decisions. Is there correlations between osteoporosis, hypercalcemia, that are really caused by other issues, or are they one in the same?

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.

@closetmonster93 your story sounds so familiar.

If your bloodwork shows a high calcium level, and you constantly feel like you have the flu, you need to get someone who is familiar with parathyroid glands. The parathyroid glands regulate the calcium levels in your body, especially your brain. They say, if your calcium is over 10.2 it’s high, and high calcium is almost always caused by a tumor on one of the glands.

It’s not common so most doctors don’t know how to handle it.
You may want to Google Parathyroid,com the site is from a group of surgeons who specialize in parathyroid problems. It is jammed packed with information.
I had my surgery there in Tampa, Fl with Dr. Norman.

I just found something interesting. I have severe knee and shoulder pain in the exact places where the osteoporsis was found. I take Tylenol meds to ease the symptomatic pain. Tylenol has been related to bone thinning. I googled "medications that can cause bone loss"... Hopefully after knee surgery (2/14/25) I will no longer be dependent on this OTC.

2012 (age 68) I was diagnosed with osteopenia. This is the year I began taking Tylenol for knee pain and shots to my knees to add cushioning. I also take a low dose of BP drug called amlodopine (the jury is out as to whether this BP drug can cause low bone density).

I wonder how many on here are taking NSAIDS with their osteoporsis treatments? My Poo-Bah PCP never cautioned me. The print that comes with drugs is so tiny one would need a interstellar telescope to read it. I don't take NSAIDs.

Is .01 or .02% a great result after taking the osteoporsis meds for 2 years? Is there D.O. MD research person monitoring our posts on Mayo Clinic to give input?

Diannemr3, Thanks for the useful information; so glad to have found this support group. We use MyChart by Epic.

@closetmonster93 your story sounds so familiar.

If your bloodwork shows a high calcium level, and you constantly feel like you have the flu, you need to get someone who is familiar with parathyroid glands. The parathyroid glands regulate the calcium levels in your body, especially your brain. They say, if your calcium is over 10.2 it’s high, and high calcium is almost always caused by a tumor on one of the glands.

It’s not common so most doctors don’t know how to handle it.
You may want to Google Parathyroid,com the site is from a group of surgeons who specialize in parathyroid problems. It is jammed packed with information.
I had my surgery there in Tampa, Fl with Dr. Norman.