Hyperparathyroidism caused osteoporosis--now what treatment?

@michaellavacot I honestly dont know what mine is. My doctor has failed to test it, or put me on any Vit D or Calcium supplement. I do know that when I was treated by other specialists, I was put on 25000 units because my vit d was not even registering in the labs. I learned at that point, my body was not absorbing anything, the way it should. That was 2017. Unfortunately, that provider retired, and left me with slim pickings to choose from and start all over, my fear is, because nobody is monitoring it, despite bringing it up, that it is lost in the hustle.

I am going to ask for a referral to an ENT in my area, when I see my doctor in a couple days. Unfortunately, my PCP is not very proactive to getting me help and researching my options. Much of this has been a on foot journey myself, because, when he did the scans of various organs, the radiologist said it was normal, however, my labs show a completely different journey. I have had multiple labs that continue to get worse, so with recently utilizing these forums, I get a lot if information, more information than I get with my Internist. I need the information, as, all these things are putting a puzzle together of my situation, and I dont have all the pieces, but I am getting there thanks to the people on here. 🙏

@sebutler, you might ask you rheumatologist for a third year of Tymlos considering your "plan" to have dental work in the next year. It is usual to lose the gains from Tymlos within the first year of stopping the medication.
There is some controversy over the third year, so I hope all those opposed will respond here and add other replacement drug suggestions.

Thank you for your reply. Do you know if one year of Reclast would prevent the gains from Tymlos being lost? I suspect I will have to go on Reclast, but want to minimize the time on the drug (the fewer years the better), given the risk of jaw necrosis and femur breaks if I should need to have any dental surgery. My rheumatologist minimizes the risk, but then there are all those horror stories circulating!!

Okay, it's 2025 and you're going to find a new doctor. You want to see an endocrinologist, and hopefully one that specializes in osteoporosis. Then you have to get a standard set of tests to rule out secondary causes of osteoporosis. After that, you will feel much more comfortable with developing a plan with your new doctor.

I put together a video for newcomers to osteoporosis that I really think you should watch https://youtu.be/Z4uXAsnhSaA . I promise it will be worth your time. And no, I don't get paid for it or by anyone, I'm just giving back to the community that helped me.

Get smart and be your own advocate! Good luck.

I have the feeling you have a very good rheumatologist.
How do they reduce the risk with Reclast?
The doctor who ran the clinical trials on Reclast says he seldom prescribes the second year as the protection it provides is just as good for two years. So no advantage in the second year injection. He also says that everyone knows that 4mg is just as effective as the 5mg dose.
ONJ and AFF are rare, but there isn't a way to know if you'd be the rare one.

Yes, what if you are the rare one? My doctor just said that dental hygiene is important. And she said the risk of jaw necrosis or atypical femur fracture is very low (.06 percent, I think she said). I've been trying to find any information on how long patients who got ONJ/AFF were on Reclast or other bisphosphonates when that occurred -- do you know, by any chance? It's good to hear that one year on Reclast is just as good as two, and 4 mg just as good as 5 mg. Can you tell me the source of this information? I'd like to read more about it.

And even lower dosages are effective. I uploaded 2 files as I don't recall which is the one you might be most interested in.

Thank you so much for uploading these papers!! So much to learn!

https://pubmed.ncbi.nlm.nih.gov/28039941/
My source for one year Reclast and 4mg as effective as 5mg is conversational. The doctor who ran the clinicals speculated that the reason for leaving Reclast at 5mg might be commercial--to keep it separate from 4mg Zometa adverts for cancer. I wish he'd write a book.
The package insert for Reclast indicates that the optimal time for use is unknown and advises continuous reevaluation in each patient.