I think my issues with kidney stones are pretty well documented in the various threads we’ve had on here. I had my first when I was 18, but over the past 4-6 years (now 42) I’ve passed 40+ and my most recent CT scan reported another 23 pending (the calcium oxalate variety). Most of those won’t cause much more than a slight discomfort, if any pain at all, but there are a handful of >5mm stones in there that likely will be a bit more problematic.
There are certainly hereditary and dietary/dehydration elements to my situation, but something obviously changed significantly in my mid-30s. @Egore posted some good info in a different thread a year ago (quoted below) that is relevant to my case.
Doctors have their own general methods for diagnosing and treating medical conditions. During my move to Florida, my biggest hurdle with my new urologist and nephrologist was actually getting them to believe I had passed 40+ stones in a short period of time. My previous nephrologists either took a method of 1) a battery of Litholink tests and comprehensive metabolic tests (broad not specific), a nuclear med scan (inconclusive results), and a next step of general exploratory surgery to look at my parathyroids (I wasn’t ready for that) or 2) an almost immediate regimen of HCTZ (which I was warned about by the other practice).
With my new nephrologist, it felt like I had to steer him toward the primary hyperparathyroidism (PHPT) path. He said it was rare and accounts for less than 5% of chronic kidney stone diagnoses (not really true, but who am I to argue with the specialist). Even my endocrinologist was skeptical of the diagnosis and had her own tests done. I say all of this because it has taken around 5 years (and a f—k ton of pain) to find a diagnosis.
After a lot of persuasion, multiple PTH w/ Calcium tests, multiple Vitamin D tests, and a 4DCT scan of my parathyroids (fairly new tech), the diagnosis was finally confirmed. I have at least one parathyroid gland that is 15.5mm in size (should be around 3-4mm), high levels of PTH (about 3x what it should be), high blood calcium (within range but at the very upper bound), and low Vitamin D (that’s what she said).
I am moving back to Atlanta next month and will be having surgery at Norman Parathyroid Center in Tampa in July (their website is the one linked by Egore and they are considered the best in the world). Honestly, reading about what all this condition (hyperparathyroidism) can cause, it has me wondering if there are other things that may clear up (brain fog, depression, insomnia, etc.). The kidney stones are good enough, but anything else will be icing on the cake, of course. Not only do many doctors miss it when diagnosing kidney stones (as I said, my kidney specialist was adamant that it was very rare for chronic kidney stone issues), but other conditions such as fibromyalgia can be mi linked to this particular gland.
If you end up with chronic kidney stones or start randomly having a lot of them form OR you end up with various other conditions (osteoporosis etc.), it is definitely worth having tests for PHPT.
There are certainly hereditary and dietary/dehydration elements to my situation, but something obviously changed significantly in my mid-30s. @Egore posted some good info in a different thread a year ago (quoted below) that is relevant to my case.
Doctors have their own general methods for diagnosing and treating medical conditions. During my move to Florida, my biggest hurdle with my new urologist and nephrologist was actually getting them to believe I had passed 40+ stones in a short period of time. My previous nephrologists either took a method of 1) a battery of Litholink tests and comprehensive metabolic tests (broad not specific), a nuclear med scan (inconclusive results), and a next step of general exploratory surgery to look at my parathyroids (I wasn’t ready for that) or 2) an almost immediate regimen of HCTZ (which I was warned about by the other practice).
With my new nephrologist, it felt like I had to steer him toward the primary hyperparathyroidism (PHPT) path. He said it was rare and accounts for less than 5% of chronic kidney stone diagnoses (not really true, but who am I to argue with the specialist). Even my endocrinologist was skeptical of the diagnosis and had her own tests done. I say all of this because it has taken around 5 years (and a f—k ton of pain) to find a diagnosis.
After a lot of persuasion, multiple PTH w/ Calcium tests, multiple Vitamin D tests, and a 4DCT scan of my parathyroids (fairly new tech), the diagnosis was finally confirmed. I have at least one parathyroid gland that is 15.5mm in size (should be around 3-4mm), high levels of PTH (about 3x what it should be), high blood calcium (within range but at the very upper bound), and low Vitamin D (that’s what she said).
I am moving back to Atlanta next month and will be having surgery at Norman Parathyroid Center in Tampa in July (their website is the one linked by Egore and they are considered the best in the world). Honestly, reading about what all this condition (hyperparathyroidism) can cause, it has me wondering if there are other things that may clear up (brain fog, depression, insomnia, etc.). The kidney stones are good enough, but anything else will be icing on the cake, of course. Not only do many doctors miss it when diagnosing kidney stones (as I said, my kidney specialist was adamant that it was very rare for chronic kidney stone issues), but other conditions such as fibromyalgia can be mi linked to this particular gland.
If you end up with chronic kidney stones or start randomly having a lot of them form OR you end up with various other conditions (osteoporosis etc.), it is definitely worth having tests for PHPT.
