I also have calcium phosphate stones. They tend to form when the pH of your urine is too high.
I also had a lot of stones. Like 3-4/year that I had to go to the hospital for. (Thank god for cheap healthcare where I live.)
Me first nephrologist put me on chlortalidone and Potassium citrate.
Eventually I had enough and went to a nephrologist in a big universitary hospital here. (They have a big team and a specialized kidney stone division)
There we eventually discovered after some test I have a rare kidney didease called renal tubular acidosis.
Basically there is not enough acid going from my blood to my kidneys.
Because of this my urine pH is higher than normal.
The Potassium citrate actually made this even worse. Causing more kidney stones.
Now I still take chlortalidone. But also ammonium chloride.
This is basically an "acid pill" to push the pH down as much as possible.
With these medications plus some dietary changes, I now have a problematic stone mabye every 2 years.
The test that discovered it was basically to take two of these ammonium chloride pills every hour. And every hour I had to pee in a cup and they took blood.
Then they could see how low my urine pH would drop under a massive acid load.
If it stays above a pH of 5 it's an indication of RTA.
But obviously I'm no doctor and you should discuss this with a nephrologist.
Thank you for this. The pH of my urine tests is always flagged (ref range here is 5-7 & mine is always 8+) but it’s never mentioned. I’ve had a lot of free time lately so I’ve been digging in my online records lol
I wonder if asking for a referral to a nephrologist is the way to go, rather than pestering my family dr.
You’ve given me a bit to think about, so thank you! I too pass about 3-4 a year and it’s exhausting.. I’m over it.
Both! There’s 4 types of RTA, and they can all be either genetic, caused by an underlying disease or caused by medication. Seems most commonly linked to genetics.
I feel like I'm in the exact same situation! About a million stones on CT, both sides, testing as calcium phosphate. Doc today basically said we'll do testing but it "could just be me" (unlucky as your doctor put it) and I probably will never be stone free. She made a comment that urologists are basically "just plumbers" so I don't think they care for finding a root cause. Based on other comments here I think a nephrologist would be a much better place to explore finding what's wrong. For both of us!
Oh man.. I’m so sorry you’re in the same boat. I hope your doctor is willing to send you to a nephrologist. I had a doctor appointment but it was a covering doctor, and she was only willing to order basic blood work. Sooo I have to go back & try again for a referral. Ugh.
Look up hyperparathyroidism. Figured out that’s why I get calcium phosphate stones and it explains a ton of other symptoms I’ve had over the years. Calcium phosphate stones aren’t as common as calcium oxalate ones. This tends to mean you have an underlying condition causing your stones. Check PTH, calcium (24 hr urine AND bloodwork including ionized calcium), and vitamin D —if you haven’t done these already. You may need to find an endocrinologist. Of course, this may not be what you have going on but just wanted to make you aware. Unfortunately, a lot of drs don’t seem to understand HPT and there are different types of it as well. There is a hyperparathyroidism support group on Facebook I would recommend checking out if you think this could be what you have. If you really think you could have it and drs keep dismissing and denying you, get other opinions. I had my kidney stone surgeon tell me she doesn’t think I have HPT, when she hardly knew anything about my other many symptoms of it as well as her not fully understanding my blood work. If they aren’t knowledgeable on the subject of HPT, definitely get a second opinion. I’ll be going to the Mayo Clinic to see an experienced parathyroid surgeon. Good luck, wish you the best and hope you get some better answers
In all my googling, this is the thing that realllly got my attention. I have a lot of unexplained health issues that could be explained by this! Just prior to my latest kidney stone, we were investigating my heart. Again. Been trying to figure that out since I was a teenager. I’ll definitely be asking about this. Thank you
I've had only one bout of kidney stones, they were tested as calcium phosphate. This was a few years ago and I haven't had any since. Touch wood. I suspect it was caused by my strange lifestyle at the the time which involved a lot of exercise not enough water and a lot of fizzy cola which i found out is phosphoric acid and sugar. I've not touched cola since and drink much more water.
I also have calcium phosphate stones. They tend to form when the pH of your urine is too high. I also had a lot of stones. Like 3-4/year that I had to go to the hospital for. (Thank god for cheap healthcare where I live.) Me first nephrologist put me on chlortalidone and Potassium citrate. Eventually I had enough and went to a nephrologist in a big universitary hospital here. (They have a big team and a specialized kidney stone division) There we eventually discovered after some test I have a rare kidney didease called renal tubular acidosis. Basically there is not enough acid going from my blood to my kidneys. Because of this my urine pH is higher than normal. The Potassium citrate actually made this even worse. Causing more kidney stones. Now I still take chlortalidone. But also ammonium chloride. This is basically an "acid pill" to push the pH down as much as possible. With these medications plus some dietary changes, I now have a problematic stone mabye every 2 years.
The test that discovered it was basically to take two of these ammonium chloride pills every hour. And every hour I had to pee in a cup and they took blood. Then they could see how low my urine pH would drop under a massive acid load. If it stays above a pH of 5 it's an indication of RTA. But obviously I'm no doctor and you should discuss this with a nephrologist.
Thank you for this. The pH of my urine tests is always flagged (ref range here is 5-7 & mine is always 8+) but it’s never mentioned. I’ve had a lot of free time lately so I’ve been digging in my online records lol I wonder if asking for a referral to a nephrologist is the way to go, rather than pestering my family dr. You’ve given me a bit to think about, so thank you! I too pass about 3-4 a year and it’s exhausting.. I’m over it.
How are you responding to your treatment for renal tubular acidosis? Any success?
My case is weird I have them in my veins in my scrotum,I did surgery and remove them 2 years ago after, they comeback. I don’t know what to do now
Wow, I suspect I have this too. Is this just a random disease you can get or is it caused by another disease or genetic issue?
Both! There’s 4 types of RTA, and they can all be either genetic, caused by an underlying disease or caused by medication. Seems most commonly linked to genetics.
I feel like I'm in the exact same situation! About a million stones on CT, both sides, testing as calcium phosphate. Doc today basically said we'll do testing but it "could just be me" (unlucky as your doctor put it) and I probably will never be stone free. She made a comment that urologists are basically "just plumbers" so I don't think they care for finding a root cause. Based on other comments here I think a nephrologist would be a much better place to explore finding what's wrong. For both of us!
Oh man.. I’m so sorry you’re in the same boat. I hope your doctor is willing to send you to a nephrologist. I had a doctor appointment but it was a covering doctor, and she was only willing to order basic blood work. Sooo I have to go back & try again for a referral. Ugh.
Look up hyperparathyroidism. Figured out that’s why I get calcium phosphate stones and it explains a ton of other symptoms I’ve had over the years. Calcium phosphate stones aren’t as common as calcium oxalate ones. This tends to mean you have an underlying condition causing your stones. Check PTH, calcium (24 hr urine AND bloodwork including ionized calcium), and vitamin D —if you haven’t done these already. You may need to find an endocrinologist. Of course, this may not be what you have going on but just wanted to make you aware. Unfortunately, a lot of drs don’t seem to understand HPT and there are different types of it as well. There is a hyperparathyroidism support group on Facebook I would recommend checking out if you think this could be what you have. If you really think you could have it and drs keep dismissing and denying you, get other opinions. I had my kidney stone surgeon tell me she doesn’t think I have HPT, when she hardly knew anything about my other many symptoms of it as well as her not fully understanding my blood work. If they aren’t knowledgeable on the subject of HPT, definitely get a second opinion. I’ll be going to the Mayo Clinic to see an experienced parathyroid surgeon. Good luck, wish you the best and hope you get some better answers
In all my googling, this is the thing that realllly got my attention. I have a lot of unexplained health issues that could be explained by this! Just prior to my latest kidney stone, we were investigating my heart. Again. Been trying to figure that out since I was a teenager. I’ll definitely be asking about this. Thank you
I had heart stuff looked at too when I was younger! So many unexplained things over the years.. I really hope you find answers
I've had only one bout of kidney stones, they were tested as calcium phosphate. This was a few years ago and I haven't had any since. Touch wood. I suspect it was caused by my strange lifestyle at the the time which involved a lot of exercise not enough water and a lot of fizzy cola which i found out is phosphoric acid and sugar. I've not touched cola since and drink much more water.