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.

164 Responses to “A QUESTION TO MY READERS”

  1. Cathy Wagner

    Hi Dr Koe,
    My husband was part of your kidney stone research many years ago. He was taking 2 medications you prescribed that were very helpful. I believe they were chlorthalidone and amiloride. He was stone free on them for 1 1/2 years and was taken off them due to other medical concerns. He continues to have a lot of kidney stones and just had surgery to have 8 of them broken up. I would like his cardiologist and urologist to revisit what was working in the past and see if he can be put back on it but I can not find the records. Is there any way you can help?

    Reply
  2. Racquel Harris

    Good afternoon Dr. Coe, I have Mast Cell Activation Syndrome and I have been taking H1 and H2 blockers Claritin and Pepcid, for more than 10 years. I formed a kidney stone 4.5mm 80% Calcium Oxalate Monohydrate and 20% Calcium Oxalate Dihydrate. I am just learning all of the parameters, reading your site, and have begun a relationship with the KSD in recent months. I have done some research that Pepcid can cause kidney stones due to the calcium carbonate. It is one of the things that helps to calm my mast cells, prior to taking this medication, I did not have kidney stones. No family history and this has been one occurrence. If there are no other alternatives, would your best advice be to stop the H2 blocker? Are there any other alternatives? I will do any and every thing not to go through that surgery and pain ever again. Thank you kindly in advance for your advice and wisdom on this matter.

    Reply
    • Fredric L Coe, MD

      Hi Racquel, Calcium carbonate can cause kidney stones, and if you were taking large amounts it would be a reasonable cause. H2 blockers do not contain calcium carbonate, however, and are not known to cause calcium oxalate stones. If you need the histamine blockers, is there an alternative to the calcium carbonate? Regards, Fred Coe

      Reply
  3. Ed Steinmetz

    Hello Dr Coe,
    During a go to meeting Jill Harris asked that I ask you these question- . Prefacing question –
    Urine calcium being 131 mg/d, urine oxalate 44mg/d, urine citrate 290 mg/d, urine pH 6.348, supsat CaOx 3.6 , urine Oxalate 44, SupSat CaP 0.47, SupSat uric acid 0.16, urine uric acid 0.543 ->
    composition first Stone was 30% CaC2O4.H2O & 70% CaC2O4.2H2O — after 1st stone, given 1080 mg K3C6H5O7 ER TID w/ meals -4 months later 2nd stone composition was
    80% CaC2O4.H2O & 20% CaC2O4.2H2O . <–Urine calcium 289 mg/d, urine oxalate 28mg/d, urine citrate 795 mg/d, urine pH 7.246, supsat CaOx 2.50 , urine Oxalate 44, SupSat CaP 1.63, SupSat uric acid 0.02, urine uric acid 0.630 .
    Q1. stone compare compostion flip flop regarding CaC2O4.H2O & CaC2O4.2H2O ? Q2. Why such a great increase in Urine Ca ?
    Q3. With urine pH over 7 seems CaP stone possibilty ?
    Q4. Maybe cut back on K3C6H5O7 ER 1080 mg tab.
    Q5. Drinking 84 oz- 112 oz daily water Average 100 oz — and 76 yrs of age — seems this would defer kidney stones ? Still also trying to figure why my initally low urine citrate ? I want to thank you for your site which I have read and your email I received…, "STRUCTURE OF SCIENTIFIC RESEARCH" ( by you and your daughter — fantastic perception and presentation ) accompanied with your dedication and sense of humor also. Along with Jill Harris LPN kidney stone prevention — I feel most fortunate & hope you do not mind that I have shared with others, including some doctors. Ed

    Reply
    • Fredric L Coe, MD

      Hi Ed, The two common forms of calcium oxalate crystals, mono and dihydrate not rarely coexist. The former generally reflects a relative excess of oxalate over calcium, the latter the opposite. Oxalate concentration is much lower than calcium in urine (0.2-0.4 vs 2 – 4 mmol/l). Urine citrate is regulated by acid base balance, and can vary – I notice it went up nicely with K citrate. This usually points to a dietary origin (too few veggies and fruits). Your urine SS values seem rather low, so I am not overly worried about a recurrence. Also, you have Jill on your side – enough for most people, I would say. Regards, Fred Coe

      Reply
  4. Lisa Russo

    Not sure if i am writing in the right place but i have a question for Dr Coe
    Diagnosed with RTA in my early 20’s, now 57. Chronic kidney stones. Previously was taking potassium citrate. Just recently, by a new physician, was told to stop taking potassium citrate because my urine is very basic. Also urine citrate level is low. Currently taking magox and vitamin D. Stones are calicium/ phosphate and a small amount of oxalate. Waiting on 24 hour urine results from litholink.
    Confused about diet recommendations i have read. According to what i have read , some of the food/fluid recommendations will actually cause further increase in urine ph. Because my urine ph is already high , i am confused as to what i should be eating/drinking and what i should be avoiding.

    Reply
    • Fredric L Coe, MD

      Hi Lisa, Very complex. A lot depends on how your urine pH actually behaves. Does it even come down, even without alkali treatment?? As you give alkali citrate and pH both rise. In RTA urine pH is never low (below 6) and often is so high without alkali that one treats with potassium citrate to get citrate into the urine. In more common calcium phosphate stone formers – whose urine citrate is low for the urine pH – one follows the SS for calcium phosphate. Citrate lowers is, it rises with pH and one aims for the lowest SS. Your physician is educated for this and has to figure out the best way. You can get genetic testing for RTA and insurance pays. If you have RTA nothing will lower urine pH and one just treats to raise citrate. Regards, Fred Coe

      Reply
      • Lisa Russo

        Thank you for your response My urine PH is ALWAYS high. Never had genetic testing done. I have always thought this was caused by a reaction to a medication I had as a child. I will get genetic testing done. My daughter-in-law was just diagnosed 6 months ago with dRTA – her father had the same. Therefore, I am concerned my granddaughter may have dRTA as well. She is currently 2 years old. This is so shocking to me as it is my understanding that dRTA is very rare. She will need to be tested

        Reply

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