Physicians can only do so much with stone prevention because a large part of the work can only be done by patients themselves.
The Five Steps to Stone Prevention, the two articles on how to read your 24 hour laboratory reports for calcium and uric acid stones, and the article on how to be a successful kidney stone patient are the reference materials you need to accomplish your part of your personal stone prevention program.
It is now time to pull these four articles together into an organized approach that any patient can follow.
USE YOUR PHYSICIAN INTELLIGENTLY
Before your visit to decide on prevention Read the article on how to be a successful kidney stone patient, where you will find lists of materials to bring with you.
Know your stone type(s).
Get the right blood and 24 hour urine testing.
Read your own 24 hour urine laboratory reports and make notes so you will be fully prepared to make use of what your physician knows
Perform what I call the ‘Great Integration’ and have it ready as a key part of your discussion with your physician.
WHAT ARE YOUR STONES MADE OF?
How, exactly, do you prevent what you do not know?
Stone analysis is the foundation of your prevention.
Find past analyses. If you have stones in your possession, get them analyzed.
If there never have been any analyses and you have no stones, make a good guess. Part 1 of Five Steps details an approach, so read it now if you do not know your stones.
Do not give up easily. Someone, somewhere, may have your report. If all you can do is guess, guess as best you can. Have your physician guess, too.
GET PROPER BLOOD AND 24 HOUR URINE TESTING
The needed blood tests can be obtained from any certified laboratory. Be sure they are fasting.
Proper 24 hour urine testing is best done through one of the national vendors of such products. Local hospital laboratories are not ideal and often simply send the urine out to such vendors with high possibility of adding errors. Vendors provide home collection and mailback materials, and issue a graphic and complete report of all measurements including supersaturations.
Much of the value of your 24 hour testing is determined by your behavior. You need to collect so the results reflect your average life conditions. If you show off and drink a lot, you will be fooling yourself. If you collect only on a weekend day, likewise. Two collections are much more valuable than one. If a collection goes badly – loss of a sample, uncertain timing, throw it out and do another – it costs nothing and prevents mistakes.
You are the one who times your collections. Make a copy of your start and stop times, so you can compare your results to those in the final report. Sometimes there is a mistake in transcribing.
You will measure the urine volume in many cases, or can measure it from markings on the container. Write them down in case there is a question of errors. The largest vendors, Litholink (a branch of LabCorp) and Quest actually infer the 24 hour urine volume and do not use your measurements in most cases. They add one or another proprietary marker to the collection container and measure its concentration. This latter tells them the volume in which the material has been diluted. That volume is the 24 hour urine volume. Here and there, though, if you have measured carefully your measurements may help resolve problems when the multiple samples from you fail to match in their completeness of collection. For your measurements to be useful, you need to read the volume as precisely as possible – get as specific a reading from the measuring scale as you can – and write the results down.
READ YOUR 24 HOUR URINE RESULTS
As I launch into this I want to make clear my intent is to enable patients to make the best use of their physician visits. You need a physician, but you can do a lot before the visit to become thoughtfully informed and thereby be a more useful partner. If you have thought through your own information the time you have together can be used for more detailed explanation and less for routine matters you can do beforehand for yourself.
ARE THE COLLECTIONS OF GOOD QUALITY?
Find the 24 hour urine creatinine excretions and see if they match within about 15 percent. If not, one is wrong. Recheck your timings. If you think the urines were perfect, call the vendor and check their times and volumes. If times and volumes match and the creatinines do not match you probably have made a mistake and you should get a third as a tiebreaker before going to your physician.
WRITE DOWN ALL THE MAIN MEASUREMENTS AS NORMAL OR ABNORMAL
Abnormal means the 24 hour value is known to be associated with risk of stones. Mostly the associations are from prospective observations. Some are based on very firm physical chemistry. The following is directly from the two articles on reading 24 hour urines for calcium or uric acid stone risk.
Write down each of the following that is abnormal – this is your list of abnormalities that are candidates for treatment
Urine Volume below 2 liters per day is abnormal – low flow
Urine calcium above 200 milligrams per day is abnormal – called hypercalciuria
Urine oxalate above 35 mg per day – called hyperoxaluria. (Strictly speaking, values above 25 mg per day are abnormal in that an association with stones can be detected above it. But most people indeed excrete more than 25 mg of oxalate, so a more practical level is above 35 mg per day). Hyperoxaluria is almost always due to a high diet oxalate intake, low calcium diet intake, or both. Values above 80 mg per day are very unusual and may reflect a systemic disease – your physician will note this – be sure it is discussed.
Urine citrate below 400 mg per day is abnormal – called hypocitraturia.
Urine pH below 5.5 confers a risk of uric acid stones – low urine pH
Urine pH above 6.3 confers a risk of calcium phosphate stones – high urine pH
Urine sodium above 100 mEq per day is above the recommended for US population – high sodium intake
Urine sodium above 65 mEq per day is above the optimal intake for the US population – above optimal sodium intake
WRITE DOWN YOUR URINE SUPERSATURATIONS
Supersaturations are not compared to normal or to stone risk because we lack the critical information. But we know one thing: If you are forming new stones, the supersaturations for the crystals in your stones are too high and need to be lowered.
PERFORM THE ‘GREAT INTEGRATION’
Here it is, and you are ready.
This is a breakdown of what is already said in another article.
IDENTIFY THE RELEVANT SUPERSATURATIONS
DO YOU REALLY FORM NEW STONES?.
Think about it and make your own decision. When you see your physician, he or she will read your scans with you and count if stones are increasing or decreasing in your kidneys. You will have gathered all your old records and will know when stones have passed or were removed. Your physician may have more such information. Decide if new stones are indeed forming.
IF YOU FORM NEW STONES WHAT ARE THEY?
We have been here before – most critical to know.
WHAT ARE YOUR URINE SUPERSATURATIONS RELATED TO THE CRYSTALS IN YOUR STONES?
Write them down; these are your relevant supersaturations
IDENTIFY URINE ABNORMALITIES CREATING RELEVANT SUPERSATURATIONS
This can be confusing so lets review things.
The purpose is to lower by half or more the supersaturations in your urine related to the crystal(s) in your stones. If your stones are mostly calcium oxalate then calcium oxalate supersaturation is your main target. If your stones are mainly calcium phosphate then calcium phosphate supersaturation is your main target.
CALCIUM OXALATE SUPERSATURATION IS YOUR MAIN TARGET
Correct abnormal urine volume, calcium, oxalate and citrate in that order or priority. For calcium I have linked to idiopathic hypercalciuria, being the usual cause, and that will link to diet sodium and diet sugar as factors your can correct without medications. If your sodium is above optimal (see above) lower it. If you eat lots of sugar, stop. Then, when fluids and diet are both corrected recheck. If CaOx SS has fallen by half or more that may be enough. In principle you could wait and see if stones are now prevented – time will tell.
I am not saying that you treat yourself nor that this is an approach written in stone. I am saying this is a common strategy that your physician may well want to use. There may be reasons not to: You have had too many stones; you have only one kidney; risk to your general health of any more stones is really high.
Thiazide diuretics are a next step when fluids and diet have failed to lower supersaturation enough or new stones form. They should usually not be a first step but rather when follow up 24 hour urines demonstrate that urine supersaturation has not fallen by half or, if it has, if observation shows you that new stones are still forming. Potassium citrate is like thiazide as it will lower urine calcium – not as dramatically – and lower supersaturation by binding calcium, as well as inhibit crystallization. But this agent has become expensive, and is always hard to take because pills are big. So thiazide is a more common first drug.
CALCIUM PHOSPHATE SUPERSATURATION IS YOUR MAIN TARGET
Correct abnormal urine volume, calcium, pH, and citrate in that order of priority. High volume (above 2.5 liters) is a very useful step here because it can be sufficient in some cases. Calcium is as for calcium oxalate: reduced sodium and sugars, thiazide diuretics is needed when diet and fluids have failed. Urine pH elevation in calcium phosphate stone formers is usually innate and not directly amenable to change but there are odd situations where this is not true. Sometimes people take in very large amounts of fruits – especially smoothies – compared to proteins and have an alkaline diet. One can try rearranging things if you are like this. Potassium citrate is an uncertain treatment here because no trials have been done for calcium phosphate stone formers.
URIC ACID SUPERSATURATION IS YOUR MAIN TARGET
Correct abnormal urine pH and volume in that order of priority. This is the easy one – raise the urine pH, almost always with potassium citrate or other alkali formulations. Whatever uric acid has been forming will form no longer, and some may dissolve.
DO YOU HAVE A SYSTEMIC DISEASE CAUSING STONES?
This is not for you to figure out.
A good screening table is in Five Steps. It requires blood and 24 hour urine measurements and a physician to interpret them. Do not try to figure this one out yourself – it is not wise nor is it practical or safe. Most stone formers do not have such diseases but those who do are in a different realm than the rest. Sites like this one, even though medically rigorous, cannot guide patients with these diseases but only inform them.
The table is not comprehensive nor meant to be. It is a table of highlights. I know many more rare and obscure causes, and so do your physicians.
By all odds you do not have any of the diseases. But do not assume.
Be sure with your physician.
If you have a systemic disease, much of the foregoing will become subsumed in systemic treatments, and these are beyond what we can do here.
MAKE YOUR MEDICAL APPOINTMENT
Between Five Steps, How to be a Successful Stone Patient, and the articles on reading your reports you are ready to do your best when you see your physician. You should expect to leave with mainly lifestyle and diet changes after a first visit, and plans for a follow up with labs in a month or two. Every cycle is the same, however, until you have reached your supersaturation goals and stones no longer form.
I hope these articles help you achieve what we all want. Let me know. Write a comment. Being only electrons, these articles can be reshaped any time, but it is really patients who can tell me how best to do that.
Having been plagued with large stones one 14mm one 12mm and a few small ones for over a year and having gone through 4 laser surgeries, one lithotripsy, multiple stents which I currently have two of, I stumbled upon your website as I am searching for better answers and treatment than I am currently receiving. I knew that there had to be a way to at least slow down the development of these stones. I will say that it is a lot of information to take in and I have a followup appointment to see my urologist on Wednesday to hopefully remove the stents and find out what he feels would be the next step. My question is would I be better trying to find a nephrologist that specializes in stone treatment ( I have not found anyone in the Charlotte, NC area) or should I go to a larger university. In all this time, I have never done a 24 hour urine test. He said he had some ideas that might work I however would like to at least have more optimism than might work. Your site has been very helpful, but with underlining medical conditions I need more than just the website. I have started increasing my fluid intake and checking on foods that I should avoid.
Any information on someone in the area or if I need to travel there would be helpful.
There are fine kidney stone physicians at Duke which is in NC – I think. Dr Glenn Preminger is outstanding and runs the stone urology group. He knows anything I would know, and I know him personally as a superb physician. Warm Regards, Fred Coe
Dr. Coe, i was a patient of yours and would like to follow up with you regarding my status. Can you please email to follow up with you. Thanks.
Hi Ernie, the easiest is to call Kathleen at 773 702 1475 and she will take care of everything. Regards, Fred Coe
Hi Dr. Coe,
I am getting ready to do two 24 hour collections, with a follow-up through Litholink after I change my diet (lowering oxalates, sodium, sugars, and animal protein, plus consistent increased fluids). My new nephrologist ordered this at my request after I explained your protocol to him. My question is – How long should I wait after the 48 hr. urine test to do the follow-up? I want to give the dietary/fluid changes time to see if there is a obvious change in my numbers. My doctor didn’t know, so I asked Litholink and they said a month or longer.
Thank you,
Carla
Hi Carla,
Ideally we want you to wait 4-6 weeks as the dietary effects are crucial in your results. This amount of time ensures that.
Jill
Thank you, Jill. I appreciate your response.
This is such an excellent resource. Thank you so much. I am only recently suffering with stones and this information is vital to me. Great work!
Hi Dr. Coe,
I am a dietitian and I am trying to wrap my mind around all the dietary implications when you have a Litholink report. I have found this website to be a WEALTH of information in helping me understand. Many thanks to you and your colleagues.
From a dietary standpoint, do you limit oxalate when the SS CaOx is elevated and/or when Oxalate 24 is elevated?
Also, if I am understanding correctly (in reference to CaOx stones), there really isn’t a reason to limit calcium in the diet and if they are not getting enough, it may be prudent to add a 1,000 mg (500 BID) supplement daily? At first, I was getting thrown off by the Litholink report of high urine calcium, but that may result from calcium loss from the bone and indicate that they need more calcium to help replace bone loss and bind with oxalate? Sometimes I see Litholink reports that advise reducing calcium and so I am becoming confused.
Is low sodium diet recommended only when 24 hr Na is high on the Litholink report, or does this go hand in hand with recommendations for CaOx stones?
Again, thank you to you and your associates for this great work. It still goes over my head at times, but I have found it to be very useful!
Marilyn
Hi Marilyn, Oxalate intake matters when urine oxalate is high, otherwise no. Low calcium diet has no place in stone prevention, and will increase absorption of food oxalate. The amounts you mention are accurate. Food calcium sources can go a long way. We are writing an article on how to get high calcium low sodium foods – not easy. As for hypercalciuria, it is at heart a disorder of renal calcium – sodium balance. As diet sodium rises – marked by urine sodium – urine calcium rises in everybody. Idiopathic hpercalciuria arises from an abnormally high slope of calcium increase per unit of sodium increase. SO lowering diet sodium will bring most hypercalciurics into the normal range. Values of 1500 mg diet sodium are ideal. For bone, in the one reliable bone balance study that addresses the matter, bone mineral gain could be achieved only with high calcium combined with low sodium. Hypercalciuria is central to calcium oxalate and the two calcium phosphate stone formers: hydroxyapatite and brushite. So it is a general problem with all calcium stone formers who are idiopathic – no systemic disease as a cause. I hope this helps, and thank you for the excellent questions, Fred Coe
Hi Marilyn-
I would have many nutritionists ask me to consult them when they got a LL report. If I can ever help, please let me know. Would be a pleasure.
You can email me at jharris1019@gmail.com and can set it up!
Very best,
Jill
Dear Dr. Coe,
Can you recommend a good nephrologist for my son to consult with in LA. He is covered under the Kaiser system there and has had two stones removed in the last two years. They were too large to pass and caught in his ureter.
Your website is very helpful, thank you for putting all of this information out there so patients can understand their issues better.
Hi Sharon, In your region I think Dr Fuchs is the best surgeon. I would try to have him manage things if Kaiser will permit it. Regards, Fred Coe
Excellent information – is there a doctor you would recommend in the Seattle area.
Thanks,
Carl
Hi Carl, I do not mention physician choices on this site – apart from a few special exceptions but we have communicated by private email. Regards, Fred Coe
Any doctors in the Seattle area that you would recommend?
Thank you very much for this very clear articles about kidney stones. I have followed many of the steps you mention and I will make the story short. I have medullary sponge kindey (only one) and in this one I have stones since my early twenties (not sure why they didn’t appear before my 21st year of age, may be due to me starting on levothiroxine at 18?). I have been on diuretic and allopurinol for 10 years and things were quite smooth until I moved to UK where doctors recommend me to stop taking this medicine. The following 5 years without any regime (only drinking lots of water) made me go through 9 surgeries of different types. I got tired and i consulted specialists in other countries and they put me back into my previous treatment of diuretic and allopurinol, they found i still have Hypercalciuria and Hyperuricosuria. Now my stones have been tested and they are 80% calcium phosphate and 20% struvite. I don’t understand how this is possible as my urine is always very acidic, it has been all my life. They also recommend me to take potassium citrate but I am afraid as it is no good in cases of infections, and I have a couple of infections during the year. So I decided to drink lots of lemonade (homemade) and keep my regime of low purines, low salt, low sugar. I have received so many different views from doctors that I do no trust completely in them anymore.
Hi Andrea, I wonder if most or all of your stones are coming from the one kidney with diagnosed MSK. If so, the urine from that kidney might be very alkaline whereas that from the other kidney acidic so the bladder urine average is out of step with the conditions where stones form. The struvite is a concern as it means some stone material is being produced by bacteria themselves, although I must caution that it is detection of struvite that analysis labs most often fail. Let me know if my guess is correct. Regards, Fred Coe
Hi Doctor Coe, thank you very much for your reply. I went through some difficult times since I left my question here so I am sorry I completely forgot about checking this website. I re-discovered it days ago and I have to thank you and your colleagues for the vital and useful information that it contains. I liked most the info about MKS, some of it was completely new to me. I have been stone free from left kidney until very recently, when some small stones have been found in it too. All my problems (staghorn calculi, surgeries) have come from my right kidney, diagnosed with MSK. I don’t know if I have dRTA too but I am suspecting it. I said that my urines are normally acidic, but I didn’t clarify that urine checks collected in the morning are usually neutral or acidic, but 24 hs urine tests were all more alkali: 6.77, 6.5, 6.50. I had two stone analyses done and the result was apatite 80% and struvite 20%. Since I re-started my drug treatment with idroclorotiazide 25 mg, clorhidrato amiloride 2.5 mg and allopurinol 100mg per day (middle 2015, recommended by doctors in my country, not in UK) I have had no serious infection in my kidneys and apparently not too much stone grow. But my physician in UK says my calcium and uric acid tests in 24 hs urine comes normal (when done in my country they never come normal, which makes me think about which normal range do they work with here. In Argentina, where I am from, the top normal level is 220 for calcium, while you, on this website, say that the top limit is 200, which makes complete sense to me). So my doctor here (UK) recommended me to take potassium citrate instead of my other drug treatment (or at the same time) and I am concern about its effectiveness in my case. Also, in two occasions, when my vit. D and PTH were tested, they came a bit abnormal. My vit D was low (6.20nG in 2011, and 15.10nG December 2016) and my PTH a bit high (62.9pG in 2011 and 58.9 December 2016). Some doctors in my country recommended me to take vit D supplements, but I am afraid of causing more damage to my delicate calcium excretion balance, so I haven’t taken them yet. My serum calcium (and other serum minerals) has always been normal, but not my calcium in urine. My concerns are as follows: Should I make my urine more alkali? Should I take potassium citrate? Should I be concern about my PTH and vit D levels? Unfortunately, I have had mixed answered to this, which have made me more confused. I have all details registered in a file as you recommend in your website and I could send it to you if you think you need to know more. I wish I had someone like you or your colleagues to see near where I live. Thank you very much for whatever you could tell me and I apologise for my long comment.
Hi Andrea, Your stones are the most important matter. They are apatite – calcium phosphate – no doubt because of the alkaline urine and high urine calcium, and struvite which is formed only by urea splitting bacteria – infection. This latter can be an artifact in that struvite crystals are often mis interpreted in stone analysis labs, so I would not be certain unless multiple stones contained it. Treatment is best with low sodium – 1500 mg diet, high calcium 1,200 diet, and the chlorthalidine. Potassium citrate is not ideal. The low sodium is essential for the thiazide to be most effective. Amiloride helps prevent potassium loss. If you are indeed vitamin D deficient I agree with your physicians it should be treated. IN fact given your treatment above I seem to agree with your physicians. ALlopurinol is irrelevant to you and so is urine uric acid given your stone analysis. Being a professor I am always ready to donate my services where possible. If you wish to send me your reports: I will be pleased to read them for you so long as it is clear I am not really in a position to interpret them in the context of your entire medical condition. Regards, Fred Coe
Thank you very much for your reply! The lab analysis of my stones were first done in 2013 after they broke down my huge staghorn calculi during a surgery. This calculi grew quickly probably due to several infections that were diagnosed too late or not diagnosed properly on time (sometimes I do not have fever even having an infection). Doctors told me at that time that the stones were made of struvite and calcium phosphate but I do not have this result with me so I don’t know the percentages. The second lab analysis I made it after I passed a stone in 2015. I took it to Buenos Aires to be analysed. This is the only one I have with me, that says 80% apatite and 20% struvite, after which doctors there put me on a drug treatment with thiazide. I tended to have many infections in the past but since I am on thiazide I noticed that I have a lot less infections. Since you agree with my treatment I am much relieved now. This treatment has been recommended to me by specialists in Buenos Aires. Here in UK they think I don’t need the thiazide drug, but I much disagree because I believe I need it. I have been reading all I can from pudmed and other sources, books too, because I want to know as much as I can about my condition. I have been always in doubt if to higher my ph or not and I have received different opinions from the specialists. One said NO to potassium citrate, the other here in UK said YES. Imagine my confussion! I will try to follow a healthy diet lowering as much possible sodium and sugars too, more than until today, and see if I am better. I am afraid of infections so I think I will not try to make my urine more alkaline, although it is a pity as I love fruit juices!. Thank you very much again for your amazing website and for answering my questions! Best regards, Andrea
Hi Andrea, The struvite certainly is from infection and has appeared in several stones therefore making one believe the analyses. I am glad the thiazide is helping and advise you keep diet sodium as low as possible to make the drug more effective and reduce potassium loss. Regards, Fred Coe
Hi Dr. Coe, thank you very much for answering our doubts. People like me with stones have many questions and sometimes we do not find the answers, or the answers are not convincing or they recommend the exact opposite. I value your opinion a lot. I have never found before such a complete website with excellent information for patients, one that wants to inform but also educate. Well, my questions are as follows: without forgetting your previous recommendations, I wonder if 1. Switching to Chlorthalidone will be more successful at keeping my loss of calcium at a normal range? I used it in my twenties and I remember taking it once a day. Now taking a pill twice a day is not easy, sometimes I forget second dose. In addition, taking the second half at 8pm makes me go to the toilet many times during the night. 2. Is there any (simple? inexpensive?) test to diagnose if I really have incomplete dRTA? 3. Sometimes I see that my PH stays high during the day (instead of being around 8 only in the morning and going down to 6-5 later). Two or three days in a row persistently at 7.5-8ph worries me a lot (as average of both kidneys I wonder how high must be in the one with MSK). Does it help lowering the PH drinking cranberry juice or taking ascorbic acid? Or better stop taking my allopurinol pill? Sometimes the strips comes with positive “trace” of lymphocytes and/or trace of blood (no symptoms at all except a very mild pain); 4. Should I also be concern about oxalate as other stone formers are? I have never had a stone of oxalate, but I have always being told to avoid the food that contains it, and very specially, vitamin C (that actually helped me a lot in my younger years to be cold & eczema free). And finally, as I have read that a high dosis of Vit. D can be harmful, such as 100,00 UI every three months, at the end of the day, if I take a lower dose, let’s say 1,000UI a day, after 3 months I would have taken 90,000UI after all. Is it the same to take small amounts every day or one high dosis every 3 months?.(or until my vit D goes back to normal). I know this is a long post and I apologise for this. They are specific questions that have been in my mind for too long! Many thanks in advance!
Hi ANdrea, Chlorthalidone is indeed more convenient. The best dose is low – 12.5 mg or 1/2 of a standard 25 mg pill. Keep the urine sodium very low to avoid potassium loss. One cannot lower urine pH safely, and I do not care if you have RTA so long as your blood CO2 content – standard blood panels have this – is normal. Allopurinol is irrelevant and should not be expected to help at all. Oxalate is not relevant to your stones. Vitamin D is used up, so 1000 or 2000 units a day is a way to keep your blood levels normal. Regards, Fred Coe
Is it common to have so many stones that they cannot be counted? Thanks!
Hi Michelle, I am afraid it is not so rare. Be sure and get evaluated for the causes of these stones so more can be prevented. Here is my best plan so far. Regards, Fred Coe
i have had 2 kidney stone surgeries in 2 yrs…. I had a 24 hr urine done with the following results;
CALCIUM OXALATE CRYSTAL 1.63 DG
BRUSHITE CRYSTAL 1.65 DG
HYDROXYAPATITE CRYSTAL 6.53 DG
URIC ACID CRYSTAL -0.22 DG
SODIUM URATE CRYSTAL 2.85 DG
are these results normal
Hi Tonya, I guess there is not enough information to say. What were the stones made of? For example were their crystals calcium oxalate, or calcium phosphate, or uric acid or some mixture. Was the urine collected representative of your normal life as was led when you formed stones? Let me know and I will try to help. There is no such thing as a normal supersaturation value, it is that the supersaturation in the urine of someone who is forming new stones is too high in relation to the crystals in the stones formed. Take a look at this video. Regards, Fred Coe
Hi, what is the oxalate content of lentils?
Hi Ed.
Don’t have a known source, but from all my readings, I think they tend to run on the higher side. I would have them in small portions.
Thanks_
Jill
Hello. Lentils have been tested and are LOW Oxalate
Hello, I was just wondering if you could either clarify for me or break down the options a little bit more. I have had 3 kidney stones. The last stone was calcium oxalate. My serum calcium number is 9.6. My Urine Citrate 249mg per day. My urine calcium 351 mg per day. You mention “Correct abnormal urine volume, calcium, oxalate and citrate in that order or priority”. Urine volume seems obvious to fix, increase water intake. How ever correcting abnormal levels of calcium, not as obvious for me. oxalates I would assume could be corrected with diet modification. Then finally citrate I am guessing also would be diet based like lemonade, and potassium citrate supplements. Any further you can help me understand different options to correcting those areas would be appreciated. Thanks for your time,
Adam
Hi Adam, Thanks for the question. So, you have your crystals – calcium oxalate, and you have your abnormalities: citrate calcium and although I do not see a volume presumably that as well. You correctly note that fixing volume is simple enough – though burdensome in reality. Remember the goal is to lower the urine supersaturation with respect to the crystals, which for calcium oxalate means that supersaturation. You do not mention an abnormal urine oxalate, so I guess that is not present.
The text reads: ‘Correct abnormal urine volume, calcium, oxalate and citrate in that order or priority. For calcium I have linked to idiopathic hypercalciuria, being the usual cause, and that will link to sodium and sugar as factors. Thiazide diuretics are a next step when fluids and diet have failed. They should not be a first step but rather when follow up 24 hour urines demonstrate that urine supersaturation has not fallen by half or, if it has, if observation shows you that new stones are still forming.’ So with water I would lower urine sodium and diet sugar and see if urine supersaturation has fallen by half. If so, and if stones are not highly frequent, I often wait to see if that is enough. If not, then thiazide.
Also, I did not mean you are to be all by yourself. Your physician can certainly help a lot. But the intent of the article is to prepare patients to get the most out of the physicians who care for them.
Your question is so important I have edited the article to make these points clearer than they are now. Much thanks, Fred
Hello doc,
I live in Texas. I am a 36 years old male. I am 5.7 tall and weigh 150 pounds. I mean, I am in a great shape. However, 2 weeks ago I passed a calcium kidney stone. My PCP told me to check online about the dietary recommendations after having a calcium kidney stone. Believe me, the research for a near perfect diet for this is more frustrating than having a kidney stone. Every sources tells a completely different story. I am tired of researching due to varying perspective.
So, you tell me what do I eat and drink and what not? I am exhausted of looking at oxalate, low oxalate , high oxalate, and all this crap.
PLEASE HELPPPPPPP!!!
Hi Gus, You are reading the article I wrote about what to do. It does not really make much of oxalate but rather that you need to know why the stones form in order to prevent them. First, what is the stone? Calcium goes with another name like oxalate or phosphate and that matters. Second has your physician looked for and excluded systemic diseases as a cause? Third, you need 24 hour urine testing: WHat is causing stones of the kind you formed? There are no varying perspectives about what I just wrote: Every responsible physician will agree these three steps are needed. Once you know what is wrong diet or even meds can be figured out. Without these basics, no one can tell you what will work. In general, assuming you have the common calcium oxalate stone and no systemic diseases, the ideal kidney stone diet is more or less the modern ideal US diet; take a look. Regards, Fred Coe
I had a first calcium oxalate stone 4 years ago. Then another one that got removed through surgery in October.
Both stones were about 6 mm big.
I just did the 24H urine test.
” Only” the following results are outside the recommended ranges:
– citrate: 160 mg
– magnesium: 44 mg
– potassium: 17.
I have been adding a small spoon of pure lemon juice into each glass of water that I drink, and I drink 6 to 10 large glass of water per day.
What treatment would you recommend to prevent recurrence ?
Hi Frank, I gather from the article that you have indeed been evaluated properly and your stone is indeed calcium oxalate. YOur urine citrate is low enough to pose risk of stones. I notice the low urine potassium and magnesium and assume that you have no organic bowel disease; this leaves poor diet as a probable contributor. Low intake of fruits and vegetables will cause so low a potassium and magnesium and also low citrate. Rather than fool about with lemon juice add the recommended 6 servings of fruits and veggies daily and retest – this may do it for the citrate. If not, potassium citrate is a tested treatment. I presume your urine calcium is below 200 mg/day, and oxalate below 30 mg/d as these would be common risk factors as well. I also assume at least 2.5 liters/day of urine volume. Regards, Fred Coe
Thank you for this wonderful resource! I recently passed a 4MM stone left kidney (1st one). The CT from ER visit revealed another 4 MM in left kidney and 4 smaller stones. The analysis of the stone I was told was 95% calcium oxalate.
A subsequent KUB 2 weeks later as result of miserable back and left side pain revealed only the 4 MM and did not detect other stones. The pain subsided after about a week, but I have no confirmation of passing another stone or the cause of pain. My 24 hour urine results are:
Urine Calcium 244
Urine Sodium 171
Urine Oxalate 34
Urine Citrate 764
Urine PH 6.977
Urine Volume 1.71
My urologist’s P.A. suggests increase in water, decrease salt and ordered another KUB and urinalysis with C&S if indicated, in 3 months.
After absorbing information from this site, I’m thinking that I should have another 24 hour urine, perhaps request along with the other 3 month tests. I’m also wondering about the oxalate and PH and if they indicate measures of prevention outside of limiting sodium and increasing volume. Lastly, it was mentioned that 4MM is borderline for lithotripsy. Of course, no one wants to pass a stone but I don’t know much about this procedure and when it makes sense. Your comments are appreciated!
Hi Lisa, I gather you have a calcium oxalate stone and your urine values indicate hypercalciuria, high sodium intake, high pH and fair urine volume. I agree with the low sodium, and a good goal is 1500 -2000 mg, lower is better. Likewise, since you have bone disease – your second comment – and hypercalciuria you need 1200 mg of calcium. That high calcium diet will lower your urine oxalate all by itself, and the low sodium intake will keep the urine calcium from rising with the higher calcium intake. Here is an article on that three way approach. The high urine pH is not of obvious cause, but the stone is CaOx not calcium phosphate so leave this alone right now. By all means get a follow up 24 hour urine and be sure the sodium is down, the oxalate is down, the volume is up and the urine calcium is no higher. Regards, Fred Coe
Hello Dr. Coe,
I recently passed another stone .6cm- 98%Calcium Oxalate, 2%Protein.
My first stone passed was .2cm-96%Calcium Oxalate, 1% ea Calcium Phosphate Carbonate and Hydroxyl, 2% Protein.
I have “a few” tiny 1-2mm non obstructing stones scattered in right kidney.
My 2nd 24 urine indicated:
Sodium down to 105 (from 171)
Oxalate down to 30 (from 34)
Volume up to 2.54 (from 1.71)
Calcium rose to 284 (from 244)
Protein (PCR) increased to 1.4 (from .9)
My doctor is talking about thiazide, but we are doing another 24 hr urine in 3 months. I am not excited about medication. I’m perplexed about sodium because adding up the foods from last 24 hr I was way over on sodium due to “less sodium” soy sauce that is outrageous but did not keep diary of foods from 1st 24 hr to compare, protein at approx. 76. Suggestions? Thank you in advance!
Hi Lisa, Your urine sodium is much better, your urine calcium seems to have risen perhaps you added diet calcium, your protein intake is too high and would have increased your urine calcium. You do not mention supersaturations but I suspect they have fallen, and if so perhaps you might leave things as they are. Take a look here. Regards, Fred Coe
Hello Dr Coe,
I just passed my 2nd stone, (“several” 1-2 mm left)
6MM, 98% Calcium Oxalate Monohydrate, 2% Protein
1st stone was,
4MM, 96% Calcium Ox., 2% Protein, 1% ea Calcium Phosphate Carbon./ Hydroxyl
My 2nd 24 hr urine analysis revealed:
Volume up from 1.71 to 2.54
CaOx down from 7.42 to 4.99
Sodium down from 171 to 105
Urine calcium up from 244 to 284
Calcium/Creatine down from 211 to 207
Calcium/Kg up from 3.7 to 4.3
I’m surprised at the sodium as I ate “Reduced sodium” soy sauce yikes!! My sodium was way high as result, 2300 mg for 1/4 cup.-total 3050/24 hrs, My protein came to approximately 76, Calcium only 70% of goal of 1200. I was trying to see what I could get away with on a somewhat normal day.
The recommendation is to begin Thiazide but settled with looking at another 24 hr urine in 3 months. I am normally am much better with sodium than this 24 hr analysis, but frustrated with high protein (reason for thiazide).
Suggestions? Thank you so much in advance!
Hi Lisa, I answered your first comment; but this one, though similar offers a bit more information. Your urine calcium rose from 244 to 284, but your urine calcium/gm urine creatinine was the same- this means the new urine was over collected compared to the first one. Creatinine excretion is steady as a digital clock, so if the calcium /creatinine is the same and total calcium higher, creatinine is higher. One of the two urines is more than 24 hours or one less than 24 hours. This means the urine sodium fell more than you thought = it was 90, not 105; I see the SS fell to 5/7, so you need to do a bit more – I vote for a lot less protein. Regards, Fred Coe
Hello again Dr. Coe,
I am getting ready for another 24 hour urine and a little confused with calculating protein intake. Can you help me with the amount of total protein and animal protein in ounces that you would recommend for my situation? Also, eggs are not considered in the animal protein count, correct? Lastly, I have not had bloodwork. What is the name of the test I should ask for? Thank you again! Your input is so helpful.
Hi Lisa, the blood is a simple renal panel. Protein foods are all the same, and animal protein is not a stone risk. So you want 0.8 to 1 gm of protein per kilogram of body weight – the normal amount for normal people. Warm regards, Fred Coe
Oh and I was diagnosed with osteopenia last year with first bone density test….
Hi Lisa, I replied; idiopathic hypercalciuria can reduce bone mineral and high calcium diet low sodium diet can help. If needed thiazide can be added, but that is often not needed. Regards, Fred Coe
hi doctor,
I have been facing kidney stones for the last 20 years. Every ear I have stones of multiple origin expelled by litholapaxy or herbal medicines or ESWL.
I just did the 24H urine test with abnormal urine citrate of 2.21 mg. with all other tests being clear.
my age is 40 years now and the urologist advised urocit-k 10mEq b.i.d , which I took for 3 months. After stopping the medication, I again develpoed stone. Please give me your advice.
Hi Irfan, With just the one number what can I say? I believe you meant 221 mg/24 hours, not 2.21, but perhaps it is in millimoles/24 hours. Here is what you really need. If you pursue an organized approach prevention is usually effective. Regards, Fred Coe
Dr. Coe,
When I had a stone last year that required a ureteroscopy (it was stuck in the ureter and was 90% calcium oxalate/10% uric acid), another stone showed up in the CT scan that was 5cm.. I was told it was in the kidney and may stay there indefinitely without causing a problem, unless it grows. Once a stone is already there, is there anything I can do to prevent it from becoming dislodged and traveling down the ureter? If it’s another calcium stone, do they ever get smaller or dissolve on their own or even disappear, or is there anything that can be done to get rid of it, short of a ureteroscopy? It’s like walking around with a loaded gun, never knowing ifor when it’s going to go off… very unnerving. Thanks
If my post gets read, I meant to say 5mm, not 5cm.
Hi Lee, Calcium oxalate stones do not dissolve. The uric acid portion – if the stone has any – will dissolve with increased urine pH. You should have your physicians monitor growth of the stone, and also be wary of pain or bleeding that might signify the stone has obstructed. Whether it is free in the renal pelvis or attached on to the kidney also matters. From here, only generalities, I am afraid; one needs to see the CT scan, and make judgments only your physicians can make. OF real importance, you should have a proper prevention program because more may form. Here is a good introduction. Regards, Fred Coe
Dr. Coe,
I am writing today with a lot of frustration. I was diagnosed with a 5mm kidney stone in April that was in my kidney. The ER referred to a urologist. Upon my visit to urologist, I was told it is difficult to pass that size, but given a week to pass it with a prescription of Flomax. In a week, I had not passed the stone and they scheduled me for lipotripsy. Since the surgery, I have felt worse. I went back, they did another ctscan and said it was now a 2mm in my ureter tube near bladder. It is now June and I am really feeling worse. The urologist sent me for a ultrasound yesterday because I still have blood in my urine also. I discovered at the ultrasound the urologist never told me all the ct results because I still have a 5mm in my kidney as well as the 2mm. I have been reading over the last several weeks and found so many recommendations to drink lemon water. I have been doing that very frequently; of course, in hopes of dissolving the stone. Today, I found your site. I have never once had the urologist recommend blood or 24 hour urine test. I do not know what kind of stone I have. I cannot understand why it would be taking this long to pass it and if all my pain and discomfort is actually just from a stone. After reading several of your articles about oxalate, I am now concerned the lemon water may have been adding to my problem. I have been wondering if these stones could be caused from a green smoothie health kick I had been doing for 2 months prior to the first onset of problems. All this being said, I don’t know what to do from here. I do not feel like I am getting anywhere with the current physician. I do not want to do the lipotripsy again. I am open to diet change, but I don’t even know if it is an oxalate stone. Does the physician have to order this 24 hour urine test? Thank you for any information and help!
Hi Angela, I am sorry for all your problems. Your physicians are indeed essential but most evaluate and treat stone formers. The article you commented on is indeed a gateway article into stone prevention and links into Five Steps etc. I would begin to use it to plan your evaluation and help your physicians get it done. Please to not go about finding remedies at random, but follow the plan. Here is perhaps a helpful other article that is just getting finished. Your smoothies might have been culprits but frankly those destined for stones are vulnerable to many kinds of stresses other people shrug off. Regards, Fred Coe
Hi Dr. Coe,
Many thanks for your detailed kidney stone information! So many other sites simply suggest that one should drink a six pack of Coca-Cola and down a cup of pureed asparagus! One and done!
I’m taking a stone in for analysis tomorrow and plan to discuss my current situation with the urologist. Long story short, is it possible that a 2 month work-out and protein (meat and protein shakes) binge could have precipitated a recent bout with stones? I’m 46 and have never had a problem until 2 weeks ago. Is it possible NOT to have had gout but to now have uric acid kidney stones? Drinking lots of water with lemon, aloe vera juice for ureteral irritation, flo-max for max output, and some baking soda and apple cider vinegar here and there.
Many thanks,
Rob Lewis
Raleigh, NC
Hi Rob, The Coke treatment is nonsense. Once you get the stone analysed and get 24 hour urines and bloods you will know exactly what to do. One can have uric acid stones without gout – not even uncommon. Regards, Fred Coe
Hello, Dr. Coe.
I had one 2mm stone back in 2008 and another 4mm stone last year in 2016, both originating in the right kidney. Unfortunately, I passed both without being able to capture the stones for analysis. My second episode took 2 months for the stone to finally pass being lodged at a point just before the bladder. Reflecting on my past dietary habits, my fluid intake was lower than suggested and my oxalate intake was very high so I am making the big assumption that the stones were CaOx.
I really wanted to take a moment to thank you for your work. Moving forward, I will heed all of your advice. The one question I have is, why is there so much discrepancy out there with regard to the level of oxalate in foods? Is it the method of testing? One resource will say coffee is higher in oxalate and another will say it’s low. Because of your incredibly informative website and scientific approach to managing kidney stone formation, I plan to use your information over other resources. Thanks, again. All the best. Steve
Hi Steve, I do not know why the lists vary so. Our list originated in the Harvard School of Public Health. Prof Ross Holmes, who really is a food oxalate expert, curated the list and corrected as necessary. He is aware of the many conflicting lists, and thinks they are just old errors. Regards, Fred Coe
Hi Dr. Coe,
I have had four kidney removed in the last twenty years. I take potassium citrate twice daily. My urologist had me do another 48 hour urine collection which was both days was over 400 in calcium. He wanted me to see an endocrinologist for possible hyper parathyroid. I contacted Norman Parathyroid Center in Florida because they do so many of the surgeries. They don’t think that I have it but rather renal calcium leak, which they don’t treat. My PTH intact was 71pg, my calcium ionized serum was 1.32 mmlo/L, my calcium was 9.7mg and my vitamin D was 34ng. My sodium is 141 which my urologist said to reduce, which surprised me, because I watch my salt intake very carefully. After I read the symptoms of a hyper parathyroid, I was sure that was the problem because I have so many of the symptoms. I am so tired, my legs have hurt so bad for the past year, I have such bad headaches, am forgetful and just crabby . I have gained a lot of weight, but am not sure if it’s because of my legs and hips always hurting. I just feel lousy for about a year. I don’t know who to see next. Would I come to your practice or do I see an endocrinologist. Any advice would be appreciated. Thank you.
Karen
Hi Karen, You have normal blood calcium and high urine calcium, and if the former is always the case in properly drawn samples, fasting, primary hyperparathyroidism is not present. I can certainly see you if you can come to Chicago. But I imagine the problem is idiopathic hypercalciuria, easily treated. The high PTH may be low calcium diet, a very bad idea indeed. You would need a high calcium low sodium diet. Let me know, Regards, Fred Coe
Dr. Coe,
Thanks for your reply. I live in Chicago. I do have a very low calcium diet. I have looked at my salt intake and think it’s low but might have to make it lower. Is there a general diet to follow for this that would help. Also, would adding calcium help with the bad leg cramps that I have daily?
Karen
HI Karen, If you are in Chicago the easiest would be to just come to see me and get real advice based on a proper knowledge. Adding calcium has many purposes, and I would be better for you in person. Regards, Fred Coe
Dr. Coe,
Thanks. I will just make an appointment.
Karen
Dr. Coe,
How do I make an appointment to see you. Thanks.
Karen
Hi Karen, Kathleen Dineen, 773 702 1475, can take care of everything for you. Regards, Fred Coe
Thanks. I will make an appointment with you. I appreciate the advice.
Karen
Hi Dr. Coe, My daughter is 16 yrs. old. She just passed a kidney stone on (Feb. 19th, 2018) (My husband passed his second stone in December 2017. He has calcium oxalate stones and his look entirely different than the one my daughter passed.) Hers is a whitish color and has a rusty looking spot on it and very jagged looking all over and in a rectangular shape, whereas my husbands is dark and not so jagged at all. I am planning on having hers analyzed to see the type of stone it is.
My concern is how young she is and already having a kidney stone. We live in northern indiana by Nortre Dame and see that you are located in Chicago. Would it be a good idea to see you since she is so young and already has passed a kidney stone? (Kidney stones run in husbands family) In the meantime I plan on looking at your website to find as much information as I can. Thank you for your time.
Hi Andrea, In fact with a husband and daughter with stones, and given your location, you might just do as well coming to the UC where I or a colleague can just get the evaluation done and treatment started. I wish to make clear that I am paid as a professor and derive no financial incentives from medical practice and so feel free to make this recommendation. My secretary is Kathleen Dineen, 773 702 1475. Regards, Fred Coe
I am 49 years old and had one stone 2 years ago that had to be removed with ureteroscopy as lithotripsy did not break it – test showed a mixture of calcium oxalate and phosphate stone . urine analysis showed hypercalciuria 256 mg , Phosphorus 1381 mg with supersaturation for Brushite
Does use of HCTZ have a role
Do you have any recommendations for a stone clinic in Houston
Hi John, My approach is to use the kidney stone diet and if that does not lower urine supersaturation for the crystals in the stones add medication. This article details the approach. I have no special thoughts for Houston, but UT SW in Dallas has some very fine stone prevention physicians. Regards, Fred Coe
Hi Dr. Coe,
I am a 61 year old male who has an extensive stone history (perhaps 30 stones and 10 to 15 lithtotripsies (sp?) over 20+ years. Two months ago I had 3 surgeries (one sonic and two lasers) in 3 weeks to get rid of stones. Soon afterwards the Urologist, in a follow-up exam, said I was stone free. Two weeks ago I was having trouble urinating and after drinking copious amounts of water (w/ lemon juice), I passed some sand or gravel and then a fully formed stone. I had the stone analyzed and it was 40% calcium oxalate dihydrate, 55% calcium monohydrate, and 5% calcium phosphate. Several months ago I was experiencing blood in my semen and discomfort in my left testicle area and I took 3 different regiments of antibiotics. I am wondering now if that might have been a factor in this latest episode of stones. I have completely quit eating nuts/peanuts, chocolate, and potatoes and attempting to drink more water. Do you have any other suggestions? Quite frankly, I have not seen a lot of interest from my urologist in helping me prevent more stones. I have also lately experienced gout and my family physician thinks I need to drink more fluids which I am attempting to do. Even though Chicago is a substantial distance from me I would consider a trip to see you if you think it would be warranted. Anyway, I feel that my visit to this site today has been very beneficial. Thanks for your great work in trying to help “stone formers.”
Hi Tom, You seem like a regular calcium oxalate stone former. The article you comment on is a good summary of how things can be done. You do not mention 24 hour urine and blood testing, however. The gout does add a bit of complexity, as well. The antibiotics seem irrelevant given so long a stone history. If you can come, I can be a physician for you. At a distance all I can do is recommend articles to read and offer some general advice – like getting fully tested. But this article is my favorite and perhaps can help a lot. Regards, Fred Coe
Thanks Dr. Coe. Your information is very helpful. I am going to ask my brother, who retired from teaching microbiology to medical students in California, to assist me in deciphering some of the information. I amy follow up with an appointment after that. I will contact your office if I decide to do that. Thanks again.
Hi Tom, Let me know how things are going. Regards, Fred Coe
Hello Dr. Coe,
I recently passed my 2nd stone, (“several” 1-2 mm left in right kidney), composition:
6MM, 98% Calcium Oxalate Monohydrate, 2% Protein
My first was,
4MM, 96% Calcium Ox, 2% Protein, 1% ea Calcium Phospate Carbonate/Hydroxyl
My 24 hr urine comparison revealed,
Improved:
Urine volume up from 1.71 to 2.54
CaOx down from 7.42 to 4.99
Urine Sodium down 171 to 105
Calcium/Creatine 211 to 207
Not good:
PH up from 6.0 to 6.1
Urine Calcium up 244 to 284
Protein .9 to 1.4
Phosphorus .826 to 1.085
Sulfate 30 to 55
Nitrogen 7.32 to 12.69
Calcium/kg 3.7 to 4.3
During this 24 hr analysis, I tried to keep it somewhat real and did not realize the sodium in “reduced sodium” soy sauce (2400 per 1/4 c.) so that was out of ordinary, will not use again!
I didn’t record foods in 1st 24 hr to compare.
Sodium 3,000 overall
Protein about 69 (high also)
Calcium only 69% of 1200 goal (low)
Thiazide recommended but doing another analysis in 3 months first. I really don’t want to take medication. Could this be off due to sodium, protein, calcium above? Surprisingly my sodium was within range(?)
Suggestions? Thank you so much in advance!
Hi Lisa, You are a tease; just as I answer one query there is another with more information! This one shows quite a rise in urea nitrogen – too much protein. You need to bring that back to 1 gm/kg/d and your urine calcium is fall; likewise you need a bit more water – extra liter a day, and I think you will perhaps avoid thiazide. Regards, Fred Coe
Thank you! My apologies, I was not seeing evidence of the message sending so you must have received many as I kept trying-ugh.
I am taking Octreotide (shots)20 mg) once a month for liver cancer and have developed bilateral kidney stones. 30% calcium opal ate monohydrate, 10% calcium o slate dihydrate, 60% calcium phosphate (hydroxy-and carbonate-apatite
Is the calcium oxalate in Octreotide causing my kidney stones.
Hi Mary, Octreotide does not contain calcium oxalate, it is a version of somatostatin. The drug can cause diarrhea and that could cause stones. Perhaps that is the problem in your situation. Stones are not a well recognized side effect of this agent. Regards, Fred Coe
Dr. Coe,
Thank you for your work.
I am a 70 year old woman who has been on generic levetiracetam 500 mg. for three years for a brain angioma cavernous in the right temporal area of the brain to prevent seizures.
Will this drug cause kidney problems or stones? What is the mechanism of action that might cause this problem. This drug is excreted via the kidneys unchanged, but in older people 40% of the drug may not be cleared by the kidneys. Just recently the urine has been amber and cloudy, with oxalate crystals, high specific gravity of 1.032, ph of 5.5, mucous, and blood. Also having nausea at a low grade daily. I think the drug is causing these issues. Thank you.
Hi DM, A comprehensive listing shows no kidney stone relationships. But you may be dehydrated and that is causing the urine changes. Regards, Fred Coe
Dr Coe, I have a history of small (sand like) kidney stones. I had a botched ureterscopy that perforated my bladder. After my bladder repair last year, I had 2 more surgeries (Jan and April ’18) to remove calcified white matter in bladder wall that formed at repair site. Last week, I had laparoscopic surgery to repair bladder again since calcified white matter continued to return despite my 4/30 surgery. My UA’s in past year have shown presence of oxalate crystals. One doctor put me on potassium citrate pills but it didn’t make a difference in eliminating deposits. My last 24 hour urine test showed elevated calcium levels which may have been coming from the calcified white matter. I was told to increase citrus. Still confused on what is the best diet.
Hi Gretchen, I deleted what seems to be a shorter version of this comment, and I am aware of a longer version, so this is a partial response. I suspect these are calcium phosphate crystals, not oxalate, and that your high urine calcium is not from the crystals but their cause. Please see my response to your longer comment for more. Regards, Fred Coe
Hi Dr. Coe! I am hoping that this post isn’t too long. First I thought I’d better give you a little background before asking my question. I am a 43 yr old woman with Medullary Sponge Kidneys. I was diagnosed at 27 when a large stone was stuck in my ureter. I can be honest and say that for a few years I lived in denial and then a bit of depression. Now I am accepting and trying to live the best life I can with my husband and 4 children.
So the question I have is about what would be causing the crazy results on my last 24 hour urine. (None of mine have been normal but this time seems very out of whack)
Oxalate urine was 69 mg
Uric Acid urine was 991 mg
PH urine was 72 mg
Phosphorus urine was 1,509 mg
Creatinine urine was 1,858 mg
Brushite was 3.42
Sodium Urate was 2.51
Everything else looked good but my nephrologist said he had lots of concerns but wasn’t sure he could help me. On another note, in June, I had an ESWL on both kidneys and I’ve had lots of infections since then.
Any thoughts? Thanks bunches!
Hi Sarah, I am not sure how big you are but I suspect the urine is over collected. The urine creatinine is that of a largish male because it arises from muscles. Everything else is high, too: Oxalate, uric acid, phosphorus, which fits with a collection problem. The pH is 7.2 I imagine, very high, so perhaps you take potassium citrate. See if your physicians agree. Likewise, divide the creatinine by your weight in kilograms and see if it exceeds 22 or more – unusual in all but large and muscular women. Regards, Fred Coe
Hi, I am a 42 female, diagnosed with MSK in both kidneys. I’ve passed over 300 stones since my first one at 28. MSK was missed until last year. I’ve only had to have 2 surgeries on stones until last year. I had a percutaneous nephrolithotomy last Oct to remove a stone over 1/2 the size of my kidney and clean out the rest. Three months later, I was back to kidney impacted with stones (right kidney has quite a few but not that many presenting/reoccurring problems). The last 2 months have been rough. I am tired of fighting something I can’t seem to control. I had emergency surgery 3 weeks ago to place a stint, and they tried getting the stone this last Wednesday….no luck. Yet, since stint placement and time passed to get the stone, a 2.5cm stone has been discovered in addition to 10mm stone stuck in ureter. They are going to want to do another percutaneous surgery. Never again, I cannot do it anymore. Went to see specialist at Mayo 3 weeks ago. I have no answers. Autotransplant kidney surgery has been suggested, Mayo doc says really bad idea. I’m about to the point of just saying take out the left kidney if right can function ok. I’m never thirsty and to the point I don’t even want to eat. Oh, I also have heart problems. This is just no way to keep living. Any suggestions on where I can really get some much needed help?
Best Regards,
Stephanie V
Hi Stephanie, You have two problems. One is surgical and best handled by consulting another surgeon – one with a very high level of skill. I could recommend Dr James Lingeman at Indiana University, or Dr Manoj Monga, at Cleveland CLinic. They are specially skilled, even beyond what you might get at Mayo – in my personal opinion. You also seem to have a very aggressive form of stone disease – you did not mention the stone type – that will have evident causes on serum and 24 hour urine testing, causes that can be corrected to prevent so many more. If you tell me where you live I can suggest places to consult at. I gather Mayo did not address this issue. Regards, Fred Coe
Hello Dr. Coe:
I have “kidney stones” detected by ultrasound and I have blood in urine after workouts. My physician wants me to take a “CT Urogram”. However his CT order form says it’s a “abdomen/pelvis CT scan w/o contrast” and the it’s for “bladder stones”.
(1) Is “CT Urogram” the same as “abdomen/pelvis CT scan w/o contrast”? I got conflicting answers so far.
(2) Is it important to mention “kidney stones” and/or “bladder stones” in the CT order form? Does it make any difference to the ultrasound technician?
Thank you.
Hi Albert, Your physician has ordered the right CT. The radiologist will read the CT for stones anywhere they lodge. Regards, Fred Coe
Hello Dr. Coe,
(1) CT scan shows I have a 5 mm dependent stone in the bladder. The doctor wants me to do an ultrasound a month later to see if the stone has passed. I wonder if ultrasound is good enough for a 5 mm stone? Shall I do another CT instead?
(2) The CT report says my prostate measures 5.6 cm. What’s the equivalent weight or volume?
(3) How long do soluble oxalates stay in one’s digestive tract? Can I separate the time of eating oxalate food and the time of drinking milk by 15 minutes to half an hour?
(4) How much milk shall I drink to bind every 10 mg of oxalate (or soluble-oxalates) in food? Is there a recommended ratio?
Thank you.
Hi Albert, I think ultrasound should be suitable – your urologist is the best expert for that because she/he knows exactly where it is and if it can be seen. As oxalate, it is absorbed in the colon. If you eat the calcium products with the oxalate products, they will get to the colon more or less at reasonably close times. There is no known human data on the intake ratios. All that exists is in the graph showing effects of diet calcium on urine oxalate – a copy is in this article. Regards, Fred Coe
Hi there,
I feel chronically dehydrated. When I get sick with small amount of vomiting or diarrhea, I require IV. The only result that’s been concrete is low volume. I have sand like stones filling both kidneys. I haven’t been able to catch/analyze them. My anion gap stays on the high side (not high, just highest to be normal). My sodium & potassium stay low. I increase my sodium intake to not feel chronically dehydrated. Any lifestyle choices I can implement to feel hydrated & avoid producing more sand like stones? Thsanks
Hi Amber, Are these dehydration attacks with stones or seeming to be a cause of stones? I have seen this, but it is not clear from your note. The sodium and potassium, are these in the blood or urine, likewise the anion gap. If you fill in these questions I can try to help. Regards, Fred Coe
My latest visit April 11, 2023, with Urologist/Specialist letting me know results showing a small stone & not to worry! He missed reading my full info chart because I had to inform him about blood in my urine. He then said, I will see you in Sept. 2023!– I could not believe what he said…I’ve been worried sick & have pain on right side of kidney area for last 2 years! Nobody seems to know anything about this pain & I don’t think it is Sciatica nerve.
On May 2nd, again my 4th Emergency run with blood in urine & was finally told I had cysts on my kidneys.
There is a long period of waiting time of close to 300 days, with many people ahead of me with the one & only Urologist Specialist in the area. I will not know what type of stone or, if the cysts are benign or not until I see him.
In this case, patience is not my virtue! I’ve called his office twice & was told I had to wait my turn! He is too busy with ‘other & younger’ patients at this time. It’s just does not seem fair!
Sincere regards,
DD
Hi Dianne, Many specialists are swamped. Perhaps a university program would be more helpful. You can look online to see which programs are near you. If I knew where you lived I would gladly do that for you. Regards, Fred Coe
I recently did a litholink 24 urine test and I think I measured/reported the total volume incorrectly. How does this impact my test results?
Hi Ann, Indeed it makes 24 hour excretion rates unreliable. But concentrations and supersaturations are usable. I would do another one. Fred
Dr Coe,
I have read your article and many of the comments and have found it helpful. However, I still do not feel confident in my plan. I had a stone removed in January. It was calcium Oxalate. In my post surgical appt with the doctor he gave me an Oxalate food list and told me to use LithoLyte. He did not specify how much. I started researching about kidney stones and asked for a 24 hour urine test which I got. The appt following the test was with the nurse practitioner. She suggested writing a prescription for pills for easy of use and because my insurance would pay for them. What I learned was that the prescription would cost $250. But also I learned that the urocit-K is a very high dosage, and I don’t want to take it if it is not necessary. I also learned that potassium increases the pH and mine is already 6.824. My calcium Oxalate saturation is 3.03 and magnesium 164. My sodium was 140 mmol. Sulfate 15, urea nitrogen 5.43, protein catabolic rate 0.5. Everything else was within normal limits although volume was a little bit low at 2400 ml. My plan is to try harder to increase water and decrease salt and sugar even more. I will take two of the packets of LithoLyte a day and avoid the very high Oxalate foods. Does this make sense with the results of the test.
Hi Linda, While potassium citrate has been effective for calcium oxalate stones, it is used in relation to the 24 hour urine testing results. Is your urine citrate below normal average (below 400 mg/d)? Given your low SS for calcium oxalate perhaps fluids and diet have already done enough. The low PCR of 0.5 suggests an incomplete urine collection or a very low protein diet, incidentally, which is not ideal. Litholyte raises urine pH, and you do not show the CaP SS which is important for calcium oxalate stones. So more or less things so not look clear to me at this stage. Regards, Fred Coe
I am 45 yo female and have had small recurring kidney stones since my early twenties. After bouncing around to doctors for years, I was finally referred to a urologist in 2019. My Litholink test in 2019 showed low Cit 24 (322) and high pH (6.55) with low p24 (.465). I was put on Potassium Citrate and told to follow a low oxalate diet “if it helped” and up my water intake. I can definitely tell when I eat high oxalate foods or miss a dose of Potassium Citrate, but have noticed remarkable improvement in bladder and kidney pain especially compared to where I was 20 years ago. My 15 year old daughter recently experienced severe back pain that was ultimately ruled a pulled muscle, but during the process it was discovered she has multiple 1mm stones in both kidneys and was referred to a nephrologist. We received her Litholink results and her test also shows low Cit 24 (232) and high pH (6.464) with K24(30) and P24(.460). Her follow-up appointment with nephrology isn’t until January 2025j are there any tips or suggestions on navigating that appointment? Should we consider a genetic link? I would like to prevent the pain and misery I experienced and get her the proper diagnosis and treatment.
Hi S. Mil, you have be heterozygous for a form of renal tubular acidosis in both having low citrate and high pH. I would suggest gene testing for this. You do not mention high urine calcium, which is compatible with this possibility. Chapter 12: Distal Renal Tubular Acidosis Regards, Fred Coe
Dr. Coe, Thank you for your response. Neither of our Litholink results are flagged with high urine calcium (mine was 39 and hers was 90). Could it still be renal tubular acidosis with just the low citrate and high pH? My daughter has had several other things going on (in addition to stones) — delayed puberty, severe muscle spasms in her back, 2 visits to ED in last year for dehydration following vomiting from suspected stomach virus (with little vomiting, she became rapidly confused and disoriented and at one point completely incoherent). At ED, she was given fluids and the last visit was put on Magnesium Citrate and Potassium. I’ve asked her pediatrician and nephrologist if all these things could be related, and neither seems to think so. Her nephrologist did put her on potassium citrate last week. She is unable to swallow the large pills, so is on a powder form. I have two younger children; how would I go about requesting genetic testing for dRTA?
Oh my; this requires some special knowledge. I would think the nearest medical school kidney stone program would be best. Renal tubular acidosis – like – syndromes can be complex and multiple problems can be associated together. From here, there is nothing I can do to help. Best, Fred Coe