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My urologist is at a loss

Posted , 7 users are following.

Guest
Guest

I’m a 5’4” 128 lb 41 year old mom who’s had kidney stones since I was 18. Otherwise, I’m very healthy and active. I’ve had lithotripsy twice and my most recent CT scan showed I have over 20 stones in each kidney. One side has a 10mm and another side has a 6mm. We’ve been only doing X-rays over the past few years during my appointments because we thought I had the type of stone that shows up on X-rays. Clearly that was wrong and the CT showed the other larger stones plus some. My 24 urine analysis showed my urine citrate is extremely low (155). I take Theralith XR and just recently talked my urologist into taking me off hydrochlorithrizid (25mg) because really nothing is helping and I had been on the diuretic for so many years (I’m kind of granola in that I try not to take medicine if it’s not really needed.) Dr is thinking I have 3 different types of stones in my kidneys. He said I’m no longer a candidate for lithotripsy but said he didn’t want to go into what the next steps would be right now since I’m not in any pain. I’ve been told to drink a minimum of 100oz of water a day and redo the 24 hour urine because the results don’t make sense. I'm a little concerned what my next steps would be which I should have pushed but I didn’t. What do you think is the next step? Does anyone have a similar situation? Besides water is there anything else I could look into? I read something about taking B-5 or B-6? 

0 likes, 11 replies

11 Replies

  • nina2561
    nina2561 Guest

    Posted

    I think I if you are not seeing a urologist at a tertiary care center ( a center that specializes ), I would get another opinion.    Nina 
  • vaughn18610
    vaughn18610 Guest

    Posted

    Very sorry about all your stones - all mine have been one at a time. Highly recommend to see a nephrologist for your strategy moving forward. Good luck😊

  • elizabeth03619
    elizabeth03619 Guest

    Posted

    Wow! That's a lot of stones! Besides drinking water, did he tell you to avoid salt and certain types of food?

    • Guest
      Guest elizabeth03619

      Posted

      No dietary changes. Dr and I think my kidney stones problems might be hereditary. My grandfather had them but not on the scale that I do. 
  • angela46352
    angela46352 Guest

    Posted

    Have you had your calcium levels checked? My stones were due to a faulty gland in the neck called parathyroid gland. You have 4 of them situated next to the thyroid. They regulate your calcium and if one or more goes into overdrive the others shut down or go into sleep mode but the faulty one made my calcium ‘go crazy’ forming the stones. 

    I’ve had it removed and now the  3 normal ones have ‘woken up’, and my calcium is back to normal. So mine were a hormonal/gland problem called hyperparathyroidism. This is a fairly rare condition  though I understand. 

    Maybe get that checked ? 

    I’m now left with quite a few residual stones in each kidney. 

    Just giving my experience. 

    Angie. 

    • jane16431
      jane16431 angela46352

      Posted

      I also had that procedure done about 12 years ago but it had no effect on my Calcium levels.   I’m glad it worked for you!
  • sarah87162
    sarah87162 Guest

    Posted

    I had kidney stones all last year and finally a consultant urologist operated and removed them.

    When I went for follow up appointment with him I asked him what I could do to prevent them coming back.

    He said "WATER WATER WATER!!!

    Someone recommended Robinson's Lemon Barley Water to me and I think that helped with the pain and discomfort while I had the stones.

    Hope you feel better soon

    Take care and keep in otuch

    Sarah xx

  • jane16431
    jane16431 Guest

    Posted

    Like you I take Theralith and HCTZ 25mg daily.  I also take Potassium Citrate (10MEQ) and Allopurinol (450mg daily.  However, I have only had Calcium Oxalate stones.   This course of medications has been helpful to me.  I have not had a stone in awhile (KNOCK WOOD).  I continue to get a 24hr collection annually and meet with a Nephrologist.

    What is odd about your story is your comment about three different types of stones at the same time.  I find this to be unusual.  I know there are actually four different kinds of stones but Calcium are by far the most common, followed by Uric Acid stones.  Women are also apparently prone to Struvite stones. 

    Note that KUB XRays will only show larger calcium based stones.

    The key to prevention from all I have read is WATER WATER WATER.  This is more important than any medication.

    As far as what to do now?  If I was not satisfied with what my doc was telling me I would go for a second opinion.  Are you seeing a Nephrologist or a Urologist?  

    • Guest
      Guest jane16431

      Posted

      I do not have struvite stones. From the collected stones over the years, Lab has said the results of different stone samples are 2 types of stones. That’s why we’ve always done X-rays. I had a CT scan because I found a hard lump on my rib that turned out to be an inflammation from possibly straining during a workout. 

      I see a urologist in a large practice in a large city that is known to be the best in urology. This is very unusual which is why I reached out to this site wondering if there was anything else out there. As I’m sure some of you feel, I feel like a ticking time bomb with all these stones. When are the big ones going to start moving. I seem to have a pretty good pain tolerence since I’ve passed smaller ones with no problem. And I always thought lithotripsy was nothing and always an option but now that’s off the table I’m freaking out a little. 

    • jane16431
      jane16431 Guest

      Posted

      I view Urologists are the ones who deal with existing stones and Nephrologists as the ones to help prevent them.

      I would not say Lithotripsy is “nothing”, especially considering the stent afterwards.

      I have read and been told that stones can be in the kidney for an essentially indefinite amount of time, especially ones in the lower lobe.  So your comment of ticking time bomb is actually pretty accurate, unfortunately 

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