Recently diagnosed with severe osteoporosis of lumbar spine -3.4 T sco

My endocrinologist failed to order baseline BTMs. I took alendronate for 1.5 years, a 4 month bisphosphonate holiday, and then one dose of zoledronic acid in November 2021. My endocrinologist wanted me to have two doses of zoledronic acid, meaning a 2nd one in November 2022, but when I started doing my own research, I began to question if he is really up to speed, and instead of having the 2nd infusion, one year to the day of my one and only zoledronic acid infusion, I had BTMs labs at my request. Of course, since bisphosphonates stay in your system for a long time, there is no way to be 100% certain if the bisphosphonates weren't still affecting my 2022 BTMs, but my gut feeling is I never had elevated bone turnover. Note, I was diagnosed with hypothyroidism in 2017 (currently take 88 mcg of levothyroxine daily) and hypothyroidism can lower bone turnover, which my endocrinologist failed to mention before prescribing bisphosphonates, actually he has never acknowledged this, and which I didn't learn until after I had had the infusion.

I had my BTMs retested in December 2023, a little over two years after my one and only zoledronic acid infusion and my results were as follows:

NTx (urine test): 13

CTx: 130 ( previous test done in 11/2022 result was) 179

P1NP: 33.5

Osteocalcin: 9.4

You are a gem for posting this link. Extremely helpful.

Yes. I have been thru this. My bone density dropped like yours. I took Actinel first for about 2 1/2 years. I developed side effects like leg and knee pain plus my eyes eventually became irritated and my GERD was affected. I stopped it and the side effects pretty much went away. However, because of some vertebral fractures, the rheumatologist put me on Forteo for 2 years to build bones. (Not sure Evenety was available then.) Once you stop Forteo, you begin to loose bone density again so I was put on Prolia and I have been on it for about 7 years. I don't notice any side effects with Prolia. Forteo seemed to bother my knees and lower back. That pain went away once I finished Forteo.
I wrestled with the decision to go on these meds but finally decided I needed something to prevent further fractures. My bone density loss was becoming more rapid and fractures are painful. Hope this helps.

@windyshores , yes, PTH, thyroid, calcium, calcium ionized, vitamin D all in normal range.

It is new and uses ultrasound instead of x-rays. Acceptance isn’t widespread yet, as it is too new. I had one done last month and my BMD scores were slightly lower than with a traditional DEXA machine. It also measures bone quality and I was pleased mine was in the green despite my -3.1 T-score in my lumbar spine.

Just started taking Teriparatide injection last evening. So far, so good. Just a little redness on the injection site which was gone by this morning. My concern is my calcium in my urine is elevated (295) and this drug will increase calcium both in blood and urine (my calcium in blood is within normal range). Would it make sense to decrease dietary calcium intake and drink more water? Will be seeing functional aprn this Thursday to discuss my results. Your opinion is greatly appreciated.

My blood calcium was a little high at 10.3 and stayed around the same throughout my Tymlos treatment. Forteo is similar I believe in effect on calcium. I was told the effect is short-lived, a few hours.

For a long time I made sure to take my calcium supplements (800mg, not the recommended 1200mg, during Tymlos...and I can't eat dairy) a few hours after Tymlos but oddly, I found side effects were better if I took some an hour before- so who knows! I took 3,000 units Vitamin D3 every day because I read that these meds "eat D3) and my levels stayed exactly the same, so I think my body needed that high of a dose during treatment. The D3 may have helped with calcium levels.

If your blood levels are okay but urine calcium high, were you taking too much calcium that was excreted (the body only absorbs about 400-500 mg at a time), or do you have a kidney issue at all?

Honestly personally I would not worry about this. Just make sure your levels are tested. You are seeing a provider this week which is good. If you do calcium tests, make sure to skip calcium for 24-48 hours before the test (ask your provider for the best time gap). Calcium shortly before the test can raise the levels. But your blood tests were lower than mine as I remember!

Thank you for your response. I get all my calcium from my diet (dairy, nuts, seeds, vegetables and fruits). I take 3,000 ius of vitamin d. The pharmacist at CVS Specialty said you should have both blood and urine test for calcium prior to using Teriparatide. My endocrinologist never tested my urine for 24 hour test. She tested my blood for calcium and calcium ionized both of which are in normal range. I'll see what my aprn has to say about this. I was also thinking of lowering my dietary calcium a bit to maybe 1,000 mg for now. Will have to wait and see. I shouldn't have to see more than one provider about my osteoporosis, but sadly, this is the case.

And I do make sure my calcium through diet is not more than 500 mg at each meal. Sometimes it's just 200, 300, 400 but never over 500 mg at each meal or snack. I don't have any kidney issues either. Thank you again for your thoughts!

It is possible that you are ingesting too much calcium. On Tymlos I had calcium intake of 800mg not the usual 1200 and the levels stayed stable. Everyone is different. It's great that your blood tests were fine. You can ask if the higher level in urine means you are ingesting too much!