I was diagnosed recently with osteoporosis.

Hello @janetsimmons

I too have hypercalciuria and there's a real good chance your T-scores are where they are because of your hypercalciuria. It's impossible to build bone if you are peeing out more calcium than you can absorb. The body cannot make calcium.

Based on my research, assuming you can make a significant change in reducing your urine calcium, you could very well see an increase in your bone density. While I don't think it will be enough to get you out of the osteoporosis range, I think your risk of fracture is likely not too high so you could try your diuretic for a year and get a new DXA scan.

That said, while your waiting, try to eliminate all other secondary causes of osteoporosis to give yourself the best chance. You will want to get some bloodwork done to check for secondary causes (like vitamin D levels) and ensure you are getting enough calcium in your diet. I recommend a bit over the recommended 1200mg if your urine calcium is still high while on the diuretic.

Personally, I was at -3.7 with a urine calcium of 550mg/day. While I was able to reduce that number to about 370mg, I had a poor response to my Evenity treatment. Again, you can't build bone if you are peeing out a significant portion of what you can absorb.

Side note: I have tried various doses of hydrochlorothiazide, chlorthalidone and now indapamide. Depending on your dosages, you might have to supplement with potassium. I started having irregular heart beats due to not taking my potassium.

I wish you the best of luck!

@janetsimmons what are your other DEXA scores? Please include the minus sign 🙂 My reports always say that the femur neck should not be used to measure change, and also that a change of .5 or more is significant. I have kept a chart of my DEXA's since 2001 and they jump around a bit, even with the same machine.

That said -3.2 isn't great either. Like you I felt strong- though my scores were a bit worse (spine -3.6) and although I kept trying to get on meds, I could not tolerate Forteo or Fosamax, which were the only ones available, and went many years without meds. Starting Tymlos was delayed by COVID and I had several spinal fractures. They are painful and disabling.

So I wonder, why not do a medication to get back to osteopenia? I did Tymos due to the adjustable dose, and ramped up to get my body used to it. I went from -3.6 to -2.5 in a year and a half. Evenity works fast and many don't have side effectss. I am doing Evenity after Tymlos. Personally I liked Tymlos better: the medicine leaves your body in a few hours, but may are doing well on Evenity.

I don't know much about excess calcium excretion. Are your kidneys okay? Are you ingesting too much calcium? Or has your metabolism gone awry? Certainly figure that out before treatment. Tymlos may make calcium higher, and Evenity may make calcium levels lower.

It looks like you have had little change, but that could be a DEXA error either way. The thing is, even at -3.2 meds could help you. Avoiding fractures is like Russian Roulette. You might win, or lose like me!

Thanks so much for this information! My urine calcium was in the 800’s and the rheumatologist says that exactly why my score is so low. I haven’t done another 24 hour urine test yet but fingers crossed that it’s much better now. My vitamin D level is actually very good and I have added potassium to my daily intake. Is there any chance your urine calcium level will continue to improve on the diuretic? My doctor told me I will need to be on one for the rest of my life.

My scores in 2010 were
Lumbar spine -2.2
Left hip -3.2
Femoral neck -3.2

In 2022
Spine -2.3
Hip -2.8
Femoral neck -3.4

Both scans performed at the same facility.

I definitely have idiopathic hypercalcuiria and not any kidney disease.

For some reason my dr wants to go straight to evinity instead of anything in pill form. I’m so happy for you being able to rebuild your bone density so much!

I have heard that spinal fractures are nothing to sneeze at. Literally. I can’t imagine being out of commission for the length of time that must take to recover from!

I am afraid doc’s just need to show evidence of “treating”. Met with mine this week who wanted to try Eventity on me. Spine : normal
Hip: -1.8 osteopenia.
I am 82 and Frax says 20% fracture risk in next 10 years… active, gym, walking … NOT SO FAST!!!! 😟

First, let me say I am so impressed with your scores!!! I wish I had the same. I don’t understand why your doctor would advise you to do something so drastic. Sometimes I think there is something unsavory going on between drs and pharmaceutical companies.

There are a couple of databases that I use to check if my doctors are taking kickbacks from pharmaceutical companies.
https://projects.propublica.org/docdollars/
and
https://openpaymentsdata.cms.gov/

@janetsimmons your spine is not osteoporotic, and your hip is osteoporotic but not terrible. After two years of Tymlos, my scores are almost identical to yours and the femur neck for me is a bit of a mystery.

Your hip looks better in 2022 than 2010 with a .4 difference. Did you take any med" Are they both left hip scores or is the recent on the right?

This is one of those cases where the best approach is unclear and I hope you can have a discussion with your doctor.

It is seeming like a lot of doctors are prescribing Evenity these days.

Thanks for posting, Janet! If you don't mind sharing , were there symptoms or some other clue that alerted you to the possibility of hypercalcuiria?

Just wondering because my med results to date haven't been as good as hoped, compared to the ladies posting here and I'm trying to figure out why. My doc just encourages me to continue with 2nd year on Tymlos before investigating further - doesn't seem all that concerned yet. But I'd like to rule some stuff out myself.

Yes. Both are left hip.