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.
140 Responses to “A QUESTION TO MY READERS”
Dan S.
When I started to eat a very healthy, vegetarian diet, my kidney function started to slowly decline over the course of 2 years Creatinine level crept up to 2.0. My nephrology was puzzled as I am a healthy 66 years old bike rider. Suddenly, in Nov. 2019, my creatinine spiked to 5.0 and I was in hospital for 3 days. Kidney biopsy shows a lot of oxalate in kidneys, driven by lots of spinach and nuts and oxalate in my supposedly “healthy diet”. Drinking 2.5 liters of water and severely restricting oxatle in foods has brought creatinine back down to 2.1 over 2 months. Any suggestions or comments? I have never had a stone. But did have very high antibiotic use for Lyme 3 years ago. I use the oxalate chart on this site for my diet. Thanks!!!
Fredric L Coe
Hi Dan S, This is a very serious matter. I do not believe a diet of spinach etc can cause oxalate nephropathy without some other cause(s) also in play. Common ones include prior GI weight loss surgery, some form of GI malabsorption, concomitant use of diuretics, laxatives, or high dose NSAIDS, or underlying primary hyperoxaluria of mild degree. I presume your urine oxalate has been measured, but you do not mention the level. If you and your physicians wish I would be pleased to look in more detail, because if mere diet caused a creatinine of 5 and your kidney has oxalate crystals in the tissues one needs to know why so another episode does not occur. I am not at all convinced that mere diet will be enough. Regards, Fred Coe
kristin
My family is not predisposed to kidney stone but they are predisposed to osteoporosis. Is calcium citrate the best form of calcium to take as a supplement – in terms of reducing risk of kidney stones? Thank you.
Fredric L Coe
Hi Kristin, if osteoporosis is occuring before menopause or in men, genetic hypercalciuria is a common cause. It is diagnosed by 24 hour urine testing. If it is present low sodium diet is crucial to permit high diet calcium without undue rise in urine calcium and risk of stones. Regards, Fred Coe
Kimberly
Hello Dr. Coe,
I have Medullary Sponge Kidneys and have kidney stones. The stones come and go and vary in size. I now have bad hypertension which they are possibly contributing to the fact that it was found that I have renal artery stenosis. I also have high PTH but normal calcium & have previously had low phosphorus. My question is, do you know if the renal artery stenosis is related to the Medullary Sponge Kidneys? I cannot find any correlation & am concerned as to why I developed renal artery stenosis. Also wondering why I am suddenly having possible parathyroid issues. I do know that parathyroid issues tend to go along with kidney disease but it is odd to me that it all went crazy at once. Any input greatly appreciated. Thanks so much.
Fredric L Coe
Hi Kimberly, MSK is not associated with renal artery stenosis, so you have two diseases. MSK is often diagnosed from CT scans, and mostly those diagnoses are incorrect. High serum PTH with normal fasting serum calcium is not primary hyperparathyroidism, a cause of stones, but usually from low calcium diet, vitamin D deficiency, or reduced kidney function. So called ‘secondary’ hyperparathyroidism. It is not surgically treated, but points to other diseases – listed – that are treated. The causes of your stones need to be determined by 24 hour urine and serum testing, as in all stone formers. I am sure your physicians have already done this, or will. The reasons for renal artery stenosis are usually atherosclerosis or fibromuscular hyperplasia, and your physicians have probably already figured out which one. Blood pressure treatment with RAS is highly specialized and usually supervised by experts. Regards, Fred Coe
Jamie
I have a long history of kidney stones. My most recent stone was analyzed at 10% calcium oxalate/ 80% calcium monohydrogen phosphate dihydrate (brushite), and 10% calcium phosphate. I have had this same composition for the previous stone I passed as well. I have yet to be able to prevent stone formation. With this stone makeup, what are your thoughts on why I’m getting them and how to avoid getting them? Thanks
jharris
Hi Sylvie,
Bread can still be eaten on a low oxalate diet. This is an article I wrote that has proven to help many patients (https://kidneystonediet.com/good-oxalate-list/). Make sure you get a urine collection done so that you can see what treatment plan will work best for you.
Best, Jill
Edward Trolley
Dr COE, I am sitting in a Lithtripsy center where my wife is having her 22nd lithotripsy. She had gone 5 years since last one but we ended up in emergency room last weekend and scan detected a 4 mm and 8 mm stones. I assume 22 of these things is not normal. Do you have any suggestions on what she should do?
Fredric L Coe
Hi Edward, I do indeed. She has had a remarkable number of stones and needs to change course. Firstly, she needs serum and 24 hour urine testing to determine cause of stones, and of course stone analyses so she knows what the crystals are. Then, why so many SWL procedures? One possibility is that one or more large stone fragmented and fragments are causing more and more procedures. I would discuss this with her surgeon. Ureteroscopy is probably better by now as stone removal can be more complete, but this is for her surgeon to determine. A second surgical opinion is not unreasonable after 22 SWL treatments, and I would ask her surgeon to help arrange that. Regards, Fred Coe
Yuri
Hi Dr. Coe,
I am a 53 year old Make that has been having kidney stones since I was 33 yrs old. Had 4 cases where medical intervention was needed. The most recent was 8/2018 on the right side what was 6.5mm and I need Laser Lithotrypsy when it was stuck.
in 2010 I had a 5.7 on the left side that was stuck, developed hydronphrosis on top of it all.
The stones are a mix, mostly on the Uric acid side.
Last 24 hr collection test showed:
SSCaOx – 10.37
Urin Calsioum -191
Urin Oxalate – 54
PH – 6.118
Uric Acid – 0.875
Was hoping you can suggest something.
Thank you.
Yuri
Fredric L Coe
Hi Yuri, Your labs show a urine pH too high for uric acid stones, but a SS for CaOx perfectly compatible with calcium oxalate stones. Are you sure you know what the stones are? Your oxalate is very high, calcium borderline, and perhaps this reflects a low calcium cite. Surely urine volume is too low given the high SS CaOx, as calcium is not high enough for that. My suggestions are in this article, and this one, too. I think that a methodical evaluation and treatment follow through should be enough. Regards, Fred Coe
Yuri
Thank you Dr. Coe for your fast reply.
the last 24hr test was done 3 months after the last 4x3x5 stone was broken down in 2018 in the right proximal ureter. I was given potassium cytrate, and I started drinking water with high PH. Increased the intake after this test, but still not at 3 liters given the lifestyle.
After the last procedure to remove the stone, I asked if the sample was collected and I was told no.
I am hoping you might be able to recommend someone in the NY area to be able to help if needed. I am trying not to lead to surgery every time I have a stone. The stones in every case were detected over a week prior to getting blockage. The process of lets wait and see if it will pass is not working.
Id there a way to break down the stone before it gets stock.
Thank you again,
Yuri
Fredric L Coe
Hi Yuri, Dr David Goldfarb at NYU would be my choice – he is very skilled in stone prevention. Please feel free to use my name by way of introduction. Regards, Fred Coe
Yuri
Thank you for the referral Dr. Coe.
One other thing that I remember is the first stones were dark in color dark grey I would say.
For my info what is the normal calcium level, and what is the normal calcium intake?
Yuri
Fredric L Coe
Hi Yuri, serum ca 8.9-10.1 in our lab – lab dependent; urine calcium stone risk begins at 200 mg/d. Regards, Fred Coe
JC
Hi Dr. Coe, after having abdominal pain since August 4th, I went in for a CT scan on August 8, which showed a 5-6mm stone in my right proximal ureter. X-ray on August 14th showed stone still in proximal ureter, but while I experienced frequent pain from August 4th – August 13th, no pain since August 13th. My urologist wants to schedule ureteroscopy, but I was wondering if it would be imprudent to wait 2-4 more weeks to see if the stone passes naturally. Thank you and my best regards.
Fredric L Coe
Hi JC, I presume your urologist has decided that your proximal ureteral stone is not destined to pass – it is at the critical size – and poses a risk for obstruction. Lack of pain means nothing, as obstruction can painlessly destroy a kidney. So, I sense your urologist is right to want to remove the thing. Of course I am far away and without any details here so this is mere commentary. Regards, Fred Coe
Victor Stankevich
Hello Dr. Coe. I’ve searched your site but could find no information regarding Chanca Piedra (Phyllanthus niruri). Anecdotal information seems to be encouraging. Is there any research on this? Thank you.
Fredric L Coe
Hi Victor, I have promised myself to write on this and cannot quite get up the energy. It is probably nonsense so far as I can tell, but one really good scientist did some nice work in it. As for dissolving stones, no possibility. For prevention, unlikely, but I need to read the few publications worth reading. Sorry for the delay, Fred Coe
Arlene Kuchar
Dr Coe. I have had large uric acid stones. Lithotripsy, laser surgery and surgery thru my back to crush and vacum the stones..
However, once I started Potassium citrate acid crystals powder 2x a day in liquids…I’ve been stone free for almost 2 years…MY DILEMMA…BOTH PHARMACEUTICAL COMPANIES HAVE DISCONTINUED PRODUCING THIS PRODUCT…I TOOK CYTRA-K CRYSTALS 3300/1002 mg.
What can I take as a replacement..I am also hoing to have Bariatric sleeve surgery in a few months…
Thank you in advance for your response and guidance..
Fredric L Coe
Hi Arlene, POtassium citrate 1080 mg tabs are available and work as well as cytra. You must be on it or an equivalent as it prevent uric acid stones perfectly. Uric acid stones are promoted by excess body weight, incidentally, because high BMI leads to low urine pH. With a sleeve and weight loss your urine pH may rise and the stones cease. Regards, Fred Coe
Ed Haidenthaller
I have been told i have silica based stones. I get one about every 10 years and they normally are 9 MM or larger and require lithotrypsie to breakup before they can be passed. How can i prevent them?
Fredric L Coe
Hi Ed, the most likely cause in the US and in an adult is use of silica based antacids. This is the most recent review I could find. Regards, Fred Coe
alex
Dr Coe,want to get an opinion on a patients panel, how can I contact you
Fredric L Coe
Hello Dr, my email is flcoe@uchicago.edu. Regards, Fred Coe