Chronic Kidney Stones: Seeking Advice

hi everyone!! i’m 19 and i’ve had chronic kidney stones since i was about 14. i’ve been trying to find the reason i keep getting stones, but it seems every urologist i go to never knows the answer. i’ve done lots or research on what this could be caused by, i’ve heard of a condition called hyperparathyroidism which is a condition in your thyroid that produces too much calcium ( that’s basically just the paraphrased version lol). my urologist suggested i see a endocrinologist, but i just need some advice on the whole situation.

Your answer

SaraKay

2y ago

Have you been tested for MSK? medullary sponge kidney? i have this it’s congenital and I always have kidney stones. It causes chronic stone formation due to the “sponge” like deformed kidneys ☹️

mourningcloak

2y ago

i haven’t been tested for that, im working on trying to find another urologist because mine doesn’t really believe me when i tell her i’m in pain. she said that when she saw that i had 5 stones that they won’t cause me any pain because they weren’t in position to move. well two days later they were moving and i had to go to the hospital so. when i do find one that actually takes me seriously, i’ll definitely mention this. thank you for telling me about this!! i’ve never heard of this before.

SaraKay

2y ago

Definitely get tested usually they catch it on ultrasound but I had an IVP when I was 18 that diagnosed me for sure. It’s not a fun test but very efficient in the diagnosis.

theMeg

2y ago

I have never heard of that procedure before!! I Googled it! I've had the laser, the basket retrieval and lithotripsy too. They've intense ooof Have you had any stents? Those were the bane of my existence omfg

mourningcloak

2y ago

hey i just saw this lol. no i’ve never had a stent, im supposed to have a lithotripsy, but i am nervous about a stent

theMeg

2y ago

Hey there! From what I've gathered over the years of messing with these , it's half hereditary, half dietary :( I'm adopted from Romania so I have zero family history and just gotta keep winging in. I just did a urinalysis with my kidney specialist and are awaiting the results! I've got thyroiditis (hashimotos) and I'm fairly confident the sluggish thyroid of mine wasn't doing me any favors in kidney and butt land. Water non stop. For real. Like invest in a nice glass 64 oz vessel and good water on deck( my last nurse reccomend a Reverse Osmosis filter for the kitchen) She's also got me on the kidney stone preventative, potassium citrate, which helps the the calcium not bind to the oxalate, thus avoiding making a stone. First round of stones and surgeries was 10 years ago and now they're back full force again. A plug in Heating pad is my best friend in the evenings and sometimes at work, those stick on heat patches for your muscle aches are amazing(thermacare IMO is the best) GOOD LUCK Holler if you've got any more questions!

mourningcloak

2y ago

hi!! thank you so much for your feedback, i’ve been dealing with this since i was 13, i’m 19 now and i thought the worst was over after i had my first surgery (percutaneous nephrolithotomy). i also just did a urinalysis and go back to see results next week. i guess i’m just upset at the fact that i have to go through this so young, i’ve had to drop out of college and take time off work because the pain is so unbearable.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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