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 – 58,000 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 Now

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.

For the first two and one half years I concentrated on patients who have no complicating systemic diseases. Most of what I would choose to say is written. What remains is editing, fixing links, updating and the general curating of what is there.

The Next Phase

I am asking you questions because I would appreciate your help.

What kind of articles do you want? More primary articles with all their links to PubMed? More explanatory ‘secondary’ articles? More public writing?

DId you like the video format?

What topics do you want more of? What have I left out?

My Ask

Comment on this brief article and give me your answers to my questions.

Your Responses

As of 12/13/16 you provided 18 comments, all good. In addition, three people simply added their ideas via my email. Because I want all of the comments visible, I am pasting them below.

Brian Lindsey:

I like to hear more and know more about acid reducers and how they affect the Kidneys and the effects on creating Kidney stones. I can say I have had more Kidney stones since I started with Prilosec then I did before I have stopped taking that and my stones have decreased in forming since is this a common theme ???

Andrew Dahlberg:

I have enjoyed reading your informative emails over the past year. A future topic for consideration may be one addressing Oxalates and how they specifically impact the creation of kidney stones. Along with this it would be very interesting to hear more about what other types of green vegetables you would suggest can be substituted for those high in oxalates as I find it difficult to get the appropriate number of vegetable servings recommended.

Thank You for your newsletter and more importantly all the research you and your colleagues do.

Linda Robin:

Topics
Foods to avoid that contribute to the make of stones
Good foods to eat to stay healthy
Subject of how much water to drink a day
Why take potassium pills if you have kidney stones
Why take a water pill if you have kidney stones
Importance of exercise as we age
Why we need to keep our bones strong
The facts re osteoporosis
Happy and Healthy Holiday
You are the Best
Thank you for all the wonderful medical advice that you provide
Warmly

A Summary of What You Asked For

I have made a table of all requests and ideas. It is an extract of all of your comments below.

Some things are already on the site, meaning I have not done so well with organization.

Some will need new articles and I hope to write them.

41 Responses to “A QUESTION TO MY READERS”

  1. Kristina Donofrio

    I love your style of writing and data sequencing, Dr. Coe. Today was the first time I found and read any of your articles.
    Serum uric acid reaches saturation and precipates. The precipitate collects in various joints causing symptoms for gout.
    Serum uric acid is removed/filtered by the kidneys and sent to the bladder for elimination.
    Do the kidneys accumulate uric acid in the filtering process, where uric acid might precipate to form or make larger stones?
    Do we know if gout leads to kidney stones?
    Do stones inhibit uric acid filtration, raising serum concentration so gout occurs?
    Do the kidneys distinguish and prioritize candidates for filtration?
    What impact does bile (and gall stones) have on uric acid processes?
    I would also like to know how the endocannabinoid system influences our filtration systems.

    I REALLY appreciate this opportunity you’ve given us. I have a million more questions!

    Kind Regards,
    Kristina

    Reply
    • Fredric Coe, MD

      Hi Kristina, Thanks for the compliment and that you enjoy the site. It is serum sodium urate that crystallizes in joints; blood pH is too high – 7 – to permit uric acid itself. Filtration of urate has no crystallization risk, and in the tubule fluid sodium, potassium and ammonium hydrogen urates do not supersaturate enough to cause crystals; but in the terminal parts of the nephrons pH can fall and uric acid itself crystallizes. There are subtleties. WHen serum urate levels become high enough – not sure about the level – tubules could plug with urate salts – so called ‘urate’ nephropathy as distinguished from uric acid nephropathy which is uric acid crystallizing in the terminal parts of the nephrons and in the final urine. Doubt exists about whether urate nephropathy occurs and how often. As for filtration, urate is alone in blood – uric acid is not present above trace amounts because of the pH. The endogenous endocannabinoids may indeed affect renal filtration because exogenous compounds do. Anandamide at least in rate, reduces filtration by dilating both the afferent and efferent arterioles. Likewise there is evidence for cannabinoid receptors in cultured renal proximal tubule cells and when occupied they signal changes in tubule cell tubule cell sodium handling that itself can control filtration via tubulo-glomerular feedback. I hope this gives at least some sense of what these compounds may be doing. I do not discuss them on this site as they have no obvious relationship to kidney stones. Best, Fred

      Reply
  2. Christine Routh

    Hello, Dr. Coe.

    Do you have any articles regarding matrix stones? I haven’t been able to find anything real specific around what the exact cause is, side effects, etc.

    Sincerely,
    C Routh

    Reply
    • Fredric Coe, MD

      Hi Christine, I am sorry to say I do not have anything on matrix stones. Are you sure no crystals occur in your stones? Be sure, because if any do the answer is to prevent them. Regards, Fred Coe

      Reply
  3. andy

    Dr Fred,
    your library length of information on this site is wonderfully educational. Not only has a link to the site stayed in my email inbox but I keep coming back to read 😂. Glad to read about citrate benefits. I’m on fresh lemon juice…

    I wonder if it is possible to add your knowledge of how bladder diverticulum can harbour multiple crystals,stones/size increase over time and how antibiotics can fail to clear a bladder infection that is being seeded by interlayered stones/multi bacteria in bladder diverticulum.

    Reply
    • Fredric Coe, MD

      Hi Andy, Thanks for the comment. Crystal formation and persistent infection in a stagnant chamber like a diverticulum – many would say it long dwell time itself permits urine to dissipate its supersaturation in crystal formation and bacterial infection of crystals that hampers antibiotic clearance. I have not written on this and need to. Whether the theory of mere stasis suffices – that is moot. Regards, Fred Coe

      Reply
  4. Midge Gilmour

    Dr. Coe,

    Thank you so much for your informative and easy to understand articles. I would like to know if there is any literature out there linking kidney stones to Cushings Syndrome. Also, my son Morgan who is in his second year of medical school would like to know if there is an established link between Cushings Syndrome and kidney stones, what is the biochemistry/disease process behind the link?

    Are there any links between thyroid disease and kidney stones?

    Thank you again for being so engaged with your patients.

    Sincerely,
    Midge Gilmour

    Reply
    • Fredric Coe, MD

      Hi Midge, Cushings can cause stones because it can cause hypercalciuria. In a lifetime I have seen it only rarely. You have probably surmised that my site has yet to contend with the systemic diseases. It is the next phase, easier in a way but detailed. As for thyroid disease, hyperthyroidism is a cause because of hypercalciuria. I will add these to my list. Warm regards, Fred

      Reply
  5. Stéphane Holistique

    Hello again, About the kind of articles. I like primary article more because I like to understand all in detail. But the secondary are nice, to have the whole picture, and in case the primary was too complex.

    Thanks for your extraordinary work and dedication to help others.
    Stephane Holistique

    Reply
  6. Al R.

    Hi Dr. Coe,
    First, warm congratulations and thanks are in order! This is a tremendous milestone and a great gift to all who suffer from kidney stones and to the doctors that treat us! I started reading in 2015, and assumed the site must have been around for many years because of its breadth.

    Thank you for asking for input. I have found the videos to be well chosen and they really helped to crystalize the concepts in my mind (no pun intended.) That said, I’m an analytical reader at heart and gravitate toward you primary articles. I have a number of ideas for articles of various types. Some would likely require new research.

    1 – How to diagnose the sub-types of IH (absorptive, renal leak, etc.) using supersaturation tests, blood work, bone density, or etc.
    I see many scattered dots in your graphs that deviate far from the averages, and my hypothesis is that some of this might be explained by different subtypes. Various treatments also seem to work better for some than others (e.g. me). My thought is that knowing more about the root cause of one’s IH could improve outcomes.

    2 – Significance of not just what we eat and how much we hydrate, but when.
    Calcium coincident with oxalate containing foods is a key example. This seems like an area ripe for research. Fortunately many patients can be stone free without worrying about this level of detail, but others are harder cases, and it may help many when traveling. We have already discussed eating a day’s protein in one large meal vs. more spread out. I am also very interested in how supersaturations rise and fall over the hours following a meal. Graphs would be wonderful. Some foods seem to cause a quick spike. And you have taught me that others, such as salt, have an effect averaged over several days. (I’ve been investigating using test strips to collect such data, but it has been challenging to get accurate and repeatable readings with the resolution I would like.)

    3 – How our body acts, and how supersaturations and stone risk vary day vs. night.

    4 – Effective strategies – thinking outside the box – to avoid kidney stones during travel. Consider airport/airline food, limitations on hydration (e.g. due to limited rest facilities), unfamiliar food overseas, and limited availability of nutrition information. It’s a zoo.

    5 – Significance of, and how to interpret blood work, such as renal panels to track progress of treatments.

    6 – Continue your excellent work on interpreting supersaturation reports and explain the rest of the parameters, such as UUN 24. Also more on high creatinine, and on factors that can skew PCR.

    7 – Research new inhibitors which could be injested to add to the well-known benefits of citrate.

    8 – As already suggested, perhaps a dedicated article highlighting the relationship to bone disease. Perhaps explain when DXA scans are appropriate.

    9 – As already suggested, more on phosphate stones and dietary considerations.

    10 – Risks, benefits, tradeoffs of ureteroscopy vs. ESWL and other topics and suggestions related to passing of stones.

    11 – How to make the best use of imaging, and tradeoffs of each. False positives, false negatives, minimizing radiation exposure risk, etc.
    E.g. I find ultrasound has often greatly exaggerated stone size. And have a friend that had ureteroscopy without a CT scan first to confirm other imaging, only to find that there weren’t actually any stones. Also whether doing CT scans both with and without contrast make any sense, given the amount of radiation, if it is clear that pH is far too high to support uric acid stones.

    12 – Research on ways to reduce urine pH when needed for CaP stone formers without requiring the unwanted an unhealthy release of calcium from the bones to stave off metabolic acidosis.
    13 – Comparison of various potassium supplements, including side effects such as stomach irritation. Citrate vs. Chloride vs. Gluconate, etc.
    My pharmacist said KCl seems to be the worst, and I don’t seem to be able to tolerate even ER tablets. Also get the word out on the importance of the serum potassium level on Cit 24 and the SSs.

    While we’re talking about the upcoming year…given your appreciation for beauty, you might enjoy taking a well-earned vacation here: https://kidneystones.uchicago.edu/treatment-of-idiopathic-calcium-stones/. I’ve had the privilege of standing in that spot. Glacier NP is beautiful. And if possible, continue to the Canadian Rockies for gems like Morrain Lake-my personal favorite. Do go in the summer, however. Winters are long and some roads may be closed for three seasons.
    Thank you again, and best regards, Al

    Reply
    • Fredric Coe, MD

      Thanks, Al. No, the site began just 2.5 years ago, and it has indeed taken up a lot of time. Very worthwhile, and I think lots of people use it to their advantage. I will add your comments to my table – linked to the article, and try to answer to them over time. I would like to go to the parks again, and perhaps I will. Warm regards, Fred

      Reply
      • Al R.

        Hi Dr. Coe,
        I have been re-reading many of your articles this year and really appreciate all the work you have been doing to update and to add new content. I found FLUID PRESCRIPTION FOR KIDNEY STONES of particular interest and help with my questions above!
        Thanks again! – Al

        Reply
  7. Lisa M Viviano

    Hi Dr. Coe!
    My question is this. I have been diagnose with MEN1 and before I was prescribed Natpara I was taking 8000 mg/day of supplemental calcium approved by my endocrinologist after parathyroid cancer x 2. There were some hiccups during my initial Natpara treatment and I was on far more than the 1200 mg/day I’m now taking. I’ve had a 24 hour Litholink test done and my urologist says my risk factors for more stone formation are minimal. I’m still suffering from symptoms daily, though. It’s miserable. Any idea how long it will take to clear my renal system from them? THANK YOU!

    Reply
    • Fredric Coe, MD

      Hi Lisa, I take this as two entries. One is that we need some articles on the site about primary hyperparathyroidism and its related diseases. The other is about you. I believe what you are describing is this: You have a diagnosis of parathyroid cancer for which your parathyroid glands have been removed and you are therefore hypoparathyroid. For this you were taking 8,000 mg/day of calcium and then put on parathyroid hormone and presently 1,200 mg of calcium. You have symptoms I presume are from low blood calcium. The drug is supposed to be used in a combination: serum 25D is in the normal range; active vitamin D may be used to minimize the dose of PTH; calcium supplements are adjusted to maintain serum calcium. If you have symptoms you need more calcium supplement, and this is reasonable as your urine calcium is – I gather – not high. I would bring the urine data to the endocrinologist who is actually treating you, as he/she is the one who needs to navigate between blood and urine calcium. I take it what you mean by clear your renal system is somehow get rid of stones. They will not dissolve, so if they pass the goal is to not form more – thence the concerns about your urine calcium. Your care is really complex, and I am sorry for so long a note. Long as it is it is not complete because your physicians have access to the real data and I am simply inferring. Regards, Fred Coe

      Reply
  8. Meghan

    If you had kidney reflux (grade 1) as a child, would that scar/damage your kidney? Would it cause constant kidney pain as an adult? I have the symptoms of MSK without the actual sponge kidneys.

    Reply
    • Fredric Coe, MD

      Hi Meghan, Reflux can lead to scarring as well as high blood pressure and loss of kidney function. Pain would be more likely if scarred regions became infected. Another possibility is obstruction has developed or reflux remains. Your urologist has probably looked into all this already. Warm regards, Fred Coe

      Reply
  9. Laura Bousada

    First of all I would like to thank you Dr. Fred Coe for all of the times and effort and love that you have already put into this site. It is a remarkable site and appreciated by so many. I don’t want much for the future of this site except for all you can keep giving, all your knowledge all your patience and information that I know was found though many years of research and data and late nights. If I wanted anything for myself from here it would be more info on the exact differences of tubual pluggings and msk. Also, everything that you know about brushite stones to have come to the conclusion they are nasty. You are one in a million and we here in my group all appreciate all what you are doing for kidney stone knowledge. Thank you from the bottom of my stoney kidneys and of course my heart.

    Reply
  10. Stéphane Holistique

    PS : Why recommand to take less oxalate to prevent calcium oxalate even in people without hyperoxaluria? Same question about purine for uric acid stone without Hyperuricosuria. It must be other things, lack of inhibitors maybe?

    Thank you,
    Stéphane Holistique

    Reply

Leave a Reply