Hypercalcuria on Tymlos

Posted by marymj7 @marymj7, Dec 30, 2023

I just received my 24 hour urine test results-and I have an extreme amount of calcium in my urine. I probably won't hear from my doctor until Tuesday. as this is a holiday weekend. I know this increases my risk of kidney and bladder stones. Has anyone else had this side effect? I don't know if this will mean I have to discontinue the Tymlos?

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I have been taking Tymlos for nine months and I’ve gained 10 pounds, also I am 13 inches bigger. I never experienced this before in fact I’ve had a tummy tuck and now I have a big squishy belly. My question is once I stop taking Tymlos nine months from now, will the belly fat go away? I read where is Tymlos create fat cells that somehow help your bones while your belly gets big, but when Tymlos is over, the fat cells stay. I also give myself insulin injections and I’ve just started doing them on my butt cheeks. If the Tymlos is going to create new fat cells then I want them to be in my butt cheeks. lol I have read a lot of questions and answers about Tymlos but there’s still one answer I have not come across yet. Once I stop Tymlos, will I start losing weight and inches and go back to what I used to be?

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@tinapauley

I have been taking Tymlos for nine months and I’ve gained 10 pounds, also I am 13 inches bigger. I never experienced this before in fact I’ve had a tummy tuck and now I have a big squishy belly. My question is once I stop taking Tymlos nine months from now, will the belly fat go away? I read where is Tymlos create fat cells that somehow help your bones while your belly gets big, but when Tymlos is over, the fat cells stay. I also give myself insulin injections and I’ve just started doing them on my butt cheeks. If the Tymlos is going to create new fat cells then I want them to be in my butt cheeks. lol I have read a lot of questions and answers about Tymlos but there’s still one answer I have not come across yet. Once I stop Tymlos, will I start losing weight and inches and go back to what I used to be?

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@tinapauley , thanks for sharing your info on Tylmos. I'm taking Teriparatide which stimulates the parathyroid gland like Tylmos. Before i started taking Teriparatide, the amount of calcium in my urine was elevated but after 5 weeks of taking it, the calcium went way up too. I went for a consultation with Dr. Keith McCormick last month and he currently wants me to reduce my calcium/vitamin D intake to 1,000 mg/1,000 iu per day, and drink plenty of water to prevent kidney stones. Too much sodium in your diet is another cause of hypercalcuria, so watch your salt intake. I will be repeating another 24 hour urine test for calcium as well as calcium citrate. Having a healthy level of calcium citrate in your urine makes you less likely to form stones. Did you talk to your doctor about this? I haven't experienced any weight gain or too much fat in my stomach. Interesting though.

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@doglover1962

@tinapauley , thanks for sharing your info on Tylmos. I'm taking Teriparatide which stimulates the parathyroid gland like Tylmos. Before i started taking Teriparatide, the amount of calcium in my urine was elevated but after 5 weeks of taking it, the calcium went way up too. I went for a consultation with Dr. Keith McCormick last month and he currently wants me to reduce my calcium/vitamin D intake to 1,000 mg/1,000 iu per day, and drink plenty of water to prevent kidney stones. Too much sodium in your diet is another cause of hypercalcuria, so watch your salt intake. I will be repeating another 24 hour urine test for calcium as well as calcium citrate. Having a healthy level of calcium citrate in your urine makes you less likely to form stones. Did you talk to your doctor about this? I haven't experienced any weight gain or too much fat in my stomach. Interesting though.

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Sorry, meant to reply to @marymj7 about hypercalcuria.

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I developed a large kidney stone while on Tymlos. It took 9 months to get it diagnosed, because where I was feeling pain wasn't where the doctors thought that pain from a kidney stone should be. No one ever checked the level of calcium in my urine. Finally had to go to ER because the pain was so bad. I had a large kidney stone inside my kidney which was too large to ever pass on its own. I had surgery to place a urinary stent between my kidney and my bladder to keep my ureter from getting blocked. Miserable experience. Had to wait about 4 weeks with the stent in place to get surgery to break apart and remove the stone. Had a stent for a few weeks after that. My Tymlos went in the garbage after that - I will take my chances. I had told my doctor before starting Tymlos that both my brother and my Dad had kidney stones. I had never had them before taking the Tymlos.

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@lylii

I developed a large kidney stone while on Tymlos. It took 9 months to get it diagnosed, because where I was feeling pain wasn't where the doctors thought that pain from a kidney stone should be. No one ever checked the level of calcium in my urine. Finally had to go to ER because the pain was so bad. I had a large kidney stone inside my kidney which was too large to ever pass on its own. I had surgery to place a urinary stent between my kidney and my bladder to keep my ureter from getting blocked. Miserable experience. Had to wait about 4 weeks with the stent in place to get surgery to break apart and remove the stone. Had a stent for a few weeks after that. My Tymlos went in the garbage after that - I will take my chances. I had told my doctor before starting Tymlos that both my brother and my Dad had kidney stones. I had never had them before taking the Tymlos.

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What a nightmare! My Tymlos is also in the garbage. Did anyone ever get around to checking your urine calcium after the stone developed? It turns out my urine calcium is a bit high at baseline, so my former endocrinologist who prescribed Tymlos would have known that had he tested-and urine calcium testing is protocol for Tymlos. I am now taking Evenity. Is Evenity an option for you?

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@marymj7

What a nightmare! My Tymlos is also in the garbage. Did anyone ever get around to checking your urine calcium after the stone developed? It turns out my urine calcium is a bit high at baseline, so my former endocrinologist who prescribed Tymlos would have known that had he tested-and urine calcium testing is protocol for Tymlos. I am now taking Evenity. Is Evenity an option for you?

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Hello,
They did a 24 h urine colletction a couple of months later, and everything was normal - I assume that would have included the urine calcium (I hope). The doctor didn't mention Evenity - I'll have to look into that - thank you!

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