A QUESTION TO MY READERS

My Question

Tell me what you want next on this site; that is my question.

I have been writing this site – with the able help of my co-authors – since July 2014, and have reached what I might call a kind of plateau. Much of what I came to say about the most common kinds of kidney stone patients is said. Because the main work is done for the moment I have come with my question to you.

The readership of the site has grown from 50 people in the first month to a present running average of 55,000 – 65,000 people monthly, depending on the season, and many of the visitors read quite a bit each. People find the site valuable, and I am happy for that.

But, what next? I can guess, I can plan, and I can write.

I can also ask.

You might question why I chose Wedding Dance Outdoors by Pieter Bruegel the Elder. The picture is wonderful, so my reasons may not matter all that much.

Up Till 2017

Because I set out to create a definitive site, not a mere collection of opinions, I built a three layer cake.

Primary articles rest on peer reviewed literature and have links in them – some say too many, some say not enough – to scientific papers on PubMed. Secondary articles elaborate on and explain the primary ones in less technical detail. They link back to the primary articles rather than to PubMed. Public articles are for patients and their families. They show how science gives us useful ways to prevent stones. They have fewer links, and those are mainly to secondary articles.

Since 2017 to now – July 2018

Since I first wrote this article I created the Kidney Stone guide Book, and new topic listings for the whole site. Some of what people asked for I have done. Here is the table of all of it. Done means just that. Part means I know I need some components. Some means I have examples and can add more.

Going Forward

As I did in 2016, I am asking again for your suggestions. Please leave them as comments. Since I have added a lot this past year, perhaps your topic is already here. If so it will be a link or at least an entry in the table.

148 Responses to “A QUESTION TO MY READERS”

  1. Linda L.

    Thank you for such an informative website, I have found it very helpful. I am curious about drinking water quality and the effect it has on kidney stone formation. Our house water source comes from a well that has hard water. When we moved in 9 months ago there was a lot of scale build up on all of our fixtures because of the hard water. The house was built in 1980. We installed a water softener on January 5th that uses Soft Salt, a few weeks later we also installed a 3 stage filter system under the kitchen sink for our drinking water. I have had issues with oxalate stones for about 15 years. On January 19th I got the results of my 24 urine collection, my calcium levels for the first time were high, at 458 mg. I had been taking a total of 800 mg of calcium citrate spit into 4 doses. My urologist took me off all calcium and referred me to a nephrologist. Because of referral issues it took almost 4 months to get that appointment so after a month I started taking 400 mg of calcium split into two doses. In 2018 I had a bone scan and was diagnosed with mild ostopenia and told to take 1000 to 1200 mg of calcium daily. The nephrologist checked my PTH, along with other labs and they were all in the normal range. I was prescribed 25 mg hydrochlorothiazide in split doses and told to take 800 mg of calcium citrate, which I am taking in split doses with meals. The last 24 urine collection was done in 2018, back then my calcium urine was in the normal range. Do you think the elevated urine calcium was from the well water? Considering that I have osteopenia and I am on hydrochlorothiazide should I adjust my calcium dose? I get some added calcium diet, but probably no enough to get the 1200 mg that was recommended after the bone scan. I stay very hydrated, maybe too hydrated, my last 24 urine collection was 4055 ml and the prior one in 2018 was 2800 ml. A CT scan was done in January and I still have about 5 stones, passed a few stones when comparing the scan to the last kidney x-ray. But I still have one stone that is considered too large to pass that may need to be removed.

    Reply
    • Fredric L Coe, MD

      Hi Linda L, It is hard to answer you because timing is not given. I gather stones began before your move, but that is a guess. On Jan 19 your urine calcium was reported as 458 and in 2018 your urine calcium was ‘normal’. You have been taking considerable amounts of extra calcium for bone loss, and there is some question about water as a past calcium source. To me the most interesting fact is that a normal urine calcium in 2018 was 450 in 2021. By the time of the collection you had installed filters, so water was no longer an issue. I do not know your age, but perhaps you became monocausal between 2018 and 2021, and are actively losing bone. Alternatively you have developed primary hyperparathyroidism. This latter raises serum calcium, but often slightly – are your serum calcium levels (not on thiazide) below 10? If not, I would be suspicious of PHPT. With so little information, I cannot do more. Regards, Fred Coe

      Reply
      • Linda

        I am 67 years old and went through menopause over 10 years ago. I was tested for hyperparathyroidism at my first visit with my nephrologist this spring, the test showed normal levels in the blood. Based on the 24 hour urine collection and normal hyperparathyroidism test the Dr prescribed 25 mg of hydrochlorothiazide. My serum calcium levels have always been in the normal range. The kidney x-ray from 2018 showed I still had about 8 kidney stones, which was before I was diagnosed with high urine calcium. My first MRI 15 years ago showed a dozen stones between both kidneys. Some of those stones were smaller ones that have passed over the years. The recent MRI indicates a 6mm stones that I have been told will probably require removal because it is too large to pass. The two 24 hour urine collections were done 3 years apart, 2018 & 2021, both had high oxalate 52, and now 61 mg. Oxalate has gone up even though I cut way down on oxalates in my diet. I used to eat a lot of foods high in oxalates, almonds, beans, and high oxalate vegetables. I made a lot of dietary changes in 2018, after a very painful kidney stone passing episode. I am wondering if I should still take the 1000 mg of calcium citrate that was recommend after my bone scan, considering that I have started taking the thiazide? Should I ask the Dr about doing another 24 hour urine collection before my next appointment which is not scheduled until September? Thank you for your time.

        Reply
        • Fredric L Coe, MD

          Hi Linda, You do not mention your urine calcium. Is it high? Did the thiazide lower it? High urine oxalate can be from the wrong foods – here is our best on that. If you take a calcium supplement, split it into portions and use part with each main meal, as calcium will block oxalate absorption and lower urine oxalate. Thiazide is no reason to stop the calcium supplement. I would get a new 24 hour urine to see if the drug has lowered stone risk. Be sure and analyze any removed stones. Regards, Fred Coe

          Reply
  2. Elizabeth

    Thank you for this website, Dr. Coe. I’ve found it very helpful. I have a few questions:
    1) First, a chicken and egg question. Do you know if having a current stone (otherwise causing no problems) can raise blood pressure? Or is it that people with hypertension are more likely to form stones? I’m a little unclear from what you said on the site as to which comes first — the stones or the elevated blood pressure. I ask because since having a (calcium oxylate) stone episode in the spring of 2019, my blood pressure has gone up by about 20 points (systolic, about 5 points diastolic). Previously, I was in a normal range but now am in a concerning one. And this is after I have lost weight, reduced sodium in my diet, and increased the amount of exercise I’m doing. I also wonder whether increasing the volume of water I drink might be a factor. Since my stone incident, I am drinking close to 3 liters of fluid (mostly water) per day.
    2) Do you know if there is a relationship between thyroid abnormalities (apart from the parathyroid) and stone formation? In my case, I was diagnosed with a toxic goiter 13 years ago, had radioactive iodine treatment for it, and have been on Synthroid since then. I had my first kidney stone within a month of being diagnosed with the goiter (before the iodine treatment) and then had two more at the same time (one in each kidney) in 2019.
    Thank you very much for your help.

    Reply
  3. TreeSprite

    Dr. Coe,

    I have enjoyed your website greatly. Thank you for sharing your knowledge. My questions are as follows:
    1.) How often do stone formers form stones in only one kidney, while the other shows no stones and looks perfectly healthy under CT scan?
    2.) Can rotation of the kidney on the sagittal axis be a cause for large uric acid stone formation, or is large stone formation generally the cause for rotation?
    3.) Does treatment/removal of stones affect rotation of the kidney?
    4.) Would treatment for uric acid stone formation in an injured and/or rotated kidney be cause for issues with a healthy kidney that is not forming stones?
    I’m sorry for so many questions. You thoroughly covered the topic of uric acid stone formation (thank you), but I didn’t see any information that addressed any of the above questions. Thank you for taking the time to notice my questions. I sincerely hope they aren’t too far off topic.

    With thanks and appreciation for the knowledge already given,
    TreeSprite

    Reply
    • Fredric L Coe, MD

      Hi TreeSprite, Not rare to be on one side – but the other can begin making them. Often the side with stones has something odd anatomically. Rotation is an oddness that can promote stones, but uric acid stones are special and need a very acid urine – take a look. Rotation is not altered by stopping stones. Prevention of uric acid stones will not endanger either kidney. Note: Uric acid stones come from overly acid urine and can always be prevented by alkali to raise the urine pH. Best, Fred Coe

      Reply
  4. Eric

    Hi
    What are the chances of someone having multiple (4) kidney stones having chronic kidney failure?

    Reply
  5. Patty Nelson

    Hi need your help. I have a kidney stone 1 cm. My urine show few bacteria and white blood cells and a few Squamish cells and some nitrates. I just finished a round of antibiotics and all of the above still present. Dr wants me to take the keflex again for 7 days and get a shot of an antibiotic I have passed soft clots that came back as being dried blood and one culture showed calcium phosphate. They want to do a lithotripsy on Friday and put in a shunt. I’m concerned I’m not so sure this is safe for me if the stone is infected. They think the stone is throwing off the infection which is E Coli. Please let me know what you think. I’ve been faithfully doing Jill’s kidney stone diet. My health is so important to me. Please advise us lithrotripsy safe with infection?

    Reply
    • Fredric L Coe, MD

      Hi Patty, I gather you have infection with a stone and calcium phosphate crystals were found in a urinalysis. Usually antibiotics are enough to treat E Coli, and your physician seems to be trying to rid you of the infection before doing SWL. It seems about right. The alternative, ureteroscopy, would involve even more instrumentation. Of course I am not a surgeon and am far away, so your personal physician is in a far better position to judge. From what I can tell, she/he is doing what I would expect. Regards, Fred Coe

      Reply
  6. Dan Fischer

    My goodness what a wonderful resource. Thank you for all your work and contributions!

    I’ve a few things I search for answers to that my benefit your readers. Personally, I’ve a calcium deficiency and form UA stones. I also seem to get headaches from Urocit-K in does as low as mEq 7.5. Oddly I can drink Crystal Light at 2/3 strength (don’t care for the taste of full strength, and I’m drinking 3l day of the stuff, so…) Thus these questions:

    1) What should I expect from Calcium Citrate as regards urine PH? I expect a raise in my PH, but limited testing with Citrical Max Plus has shown a lowering. At the same time correlation is not causation, so I’ve taken to the internet for something definitive. Sadly, I’ve found nothing. That answer might be of benefit for many. Would you share your thoughts on this as an attempt to boost my calcium and increase my PH (lower acidity)?

    2) I asked my urologist (who is cooperating) to move me down from the 15 mEq bid to 5 mEQ ER bid in the hopes I find my own tolerability level in terms of release concentration (dose) and daily intake (frequency). Obviously I need to move up from 5mEq. However, so far I’ve not found anything speaking to the release duration/window or half life. I may have found reference (link below) that suggests ER’s efficacy is 12 hours, but I’m not sure I interpret correctly. Would you share your advice?

    https://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=d2c923d5-85c1-4bbb-9f93-556080a5ef87
    (section 12.1)

    3) Related to the headaches from Urocit-K, I’ve been told by my son (ED doc) that some medicines require an adjustment period to build tolerance (lay person interpretation). He’s suggested I may be able to tolerate 15 mEQ ER bid if I build up to it. He’s no idea if Potasium Citrate might behave in such a way. I’m sure he’ll look for me, but again, your thoughts would benefit not just me, but others too.

    4) Finally, towards raising my urine PH to an average PH of 6 – 6.25, I’m considering increasing the alkalinity of the water I drink. The internet, as always, had supporters and doubters. Your site is highly trusted site and your comment on alkaline water would be deeply appreciated, I suspect, by all of us in similar situations.

    My sincere thank you again for this website!

    Dan

    Reply
  7. Darlene Shultz

    ? I’ve had kidney stones ( 1 kidney) and wear a illestomy and need to collect a 24 hr. urine to find out what kind of stones is forming? How would I do that?

    Reply
    • jharris

      Hi Darlene,
      You urinate into a collection jug. Should have no problem even though you have an ileostomy-
      j

      Reply

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