I was diagnosed recently with osteoporosis.

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.

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.

@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.

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!

Have you had your parathyroid checked? I was excreeting large amounts of calcium and losing bone density. I had parathyroid disease and had to have one of 4 glands removed. That stopped the calcium lose. I then started taking Fosomax. By the time I discovered the problem, my bone loss was great. I wish you and all the people in this feed that are dealing with calcium loss.

My rheumatologist ordered a 24 hour urine test along with bloodwork at my first visit. All my life it seems like I’ve had a trace amount of blood in my urine. I saw a urologist years ago and discovered I have kidney stones. I have never passed any, they just seem to be happy staying put. I think the rheumatologist felt like my numbers were bad for my age and my lifestyle so she was looking for other causes and she definitely found one. I also had a lot of UTI’s as a child if that factors into the grand scheme of things. 🤷🏼‍♀️

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.

Urine calcium in the 800's is rough. While your urine calcium will come down a bit over time while being on a thiazide, about the best I have seen in trials is 50% reduction. 400mg is still too high to build bone. I highly recommend you watch this video from this really good nephrologist on idiopathic hypercalciuria https://www.youtube.com/watch?v=FN9VWgCda8c . You probably want to see someone like Dr. Coe that specializes in nephrology and kidney stones.

That all said, I'm surprised your T-scores have been stable over your testing period. Perhaps the high urine calcium is recent or a messed up measurement.

Yes. Parathyroid is fine. I’m definitely losing my calcium through urine. Are you taking fosomax still and is it helping?

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!!!! 😟