Uric Acid Kidney Stone (Not!)

[woodywhippet61]

I liked your post because of the good positive attitude well done. (Didn't want you to think it was because of the pain issues.

 

[andcol]

You have the same problem as me. I am generating calcium kidney stones. I have raised calcium levels in my urine and is caused by sarcoidosis. My immune system has attacked my lungs *now it finished with my pancreas) which are now generating the calcium. The consultants do not want to treat it with the high steroid doses needed in case it causes the T2 again.

So my sympathy on the pain I know what you are going through.

PS my first one tore my kidney and got stuck in my urether (it was 7mm) and left me in hospital for 4 days (luckily it was shaped so that it didnt block the flow) - took 3 weeks to wear away enough to start moving . My understanding is a large stone that is not moving isn't an issue so they may just leave your 1cm one. fingers crossed for you

 

[Grateful]

Latest development is a "whole day" urine test. This involves peeing into a jerrycan supplied by the lab during a 24-hour period, giving it a good shake, then sending a small phial of this "well mixed" pee back to the lab. To my surprise, I filled the entire 4-liter jerrycan in 24 hours, showing that my "constant hydration" regime is working pretty well!

 

[andcol]

Wow I managed about 1/2 of a gallon plastic bottle. I then had to take it all in. Just (as of this afternoon) had the results of the latest CT scan and my kidneys are clear. So hopefully yours will clear up as well.

 

[Grateful]

Just (as of this afternoon) had the results of the latest CT scan and my kidneys are clear. So hopefully yours will clear up as well.

Excellent! I wish they had done a CT scan at my appointment 10 days ago but looks like they don't do those routinely for kidney stones; this time they only did a (pretty sophisticated) Doppler ultrasound. They did a CT scan at the A&E with my first stone back in May, but at the time they were actually searching for "the bad stuff" (cancer and other nasties, presumably) as my main symptom was acute abdominal pain. Fortunately they found the stone and thus ruled out "the bad stuff."

 

[andcol]

Yes they were not sure about this CT scan as I have had 3 in the last year because of the sarcoidosis. I did say I thought they would just do an ultrasound but the consultant said they aren't much good unless you have a large stone.

 

[Grateful]

I'm in America, and cost would be an issue (as it also is for the NHS). The charge for my CT scan was 1,102 dollars while the ultrasound was 581 dollars. I do have good insurance but even so, I end up paying for most of the cost because of the large deductible.

 

[DCUKMod]

Wow I managed about 1/2 of a gallon plastic bottle. I then had to take it all in. Just (as of this afternoon) had the results of the latest CT scan and my kidneys are clear. So hopefully yours will clear up as well.

For my 24-hour urine collection I only just managed on two of the larger containers. My GP's comment when to arrived to deliver them in their double bagged format was,.......... How can a little person like you do that much in 24 hours? In deference to her education, I didn't bother explaining the physiology of it all.

(My testing was cortisol related, so apologies for going off-topic.)

 

[annalevis]

I am also having the same problem as I am having a severe pain in my right kidney some of the time but I am not sure that what was the actual reason for this severe pain. I am worried about my kidney pain I have also consult a doctor and taking medicines but some of the I am having sever pain. I have research a lot for this sever pain attacks and I have found several ideas why I am having this pain but not sure that the mention reason was the cause of this pain. Here are the several reason to cause kidney pain but I am not having any issues like that then what was the actual problem with me ? https://www.healthmagaz.com/kidneys/kidney-pain/11-signs-may-kidney-pain/

 

[Grateful]

Have recently heard back from the kidney stone specialist.

"I've reviewed your 24 hour urine testing and this shows you have a very elevated level of urine calcium. I suspect this is the primary issue and would benefit from medical therapy, specifically with a class of drugs called thiazide diuretics. On the basis of these results, I think you would benefit from meeting with a nephrologist (an internist that specializes in the management of kidney disorders with medication and diet)...."

I emailed the doctor and reminded him that I had been taking calcium supplements, and eating mountains of nuts, both of which I discontinued only a few weeks before the urine test. I asked him for the actual results of the test. His response:

"I am still waiting for the form to be scanned in -- the hard copy is still in my office and not uploaded yet. You probably can't see the results [online] bc it is from an outside lab. My recollection is that it was in the 400's, which is very, very high and your urine sodium level was normal, which usually is the easiest diet link. You could get the levels up with calcium supplements, but that would be feasible only if you were taking those without food."

I now have an appointment with a nephrologist at the end of the month. I am not happy about the idea of going on thiazides, which are in fact a form of blood pressure medication (which happens, also, to be effective in lowering calcium levels). I am personally certain that the kidney stones are caused by my huge change in diet, post-T2-diagnosis, and therefore would like to try handling this entirely with diet, and see if that works. (If I start taking drugs immediately, I will never know whether a diet-only approach would have done the trick.) OTOH the doctor does seem to be convinced that the high calcium levels were not caused by diet (in which case, the appearance of kidney stones only three months after starting the LC diet is a hell of a coincidence!!!!).

Edited later to change "drugs-only" to "diet-only" in last paragraph.

 

[Bluetit1802]

May I ask what your blood pressure is?
If it is normal or slightly under average, taking meds that will lower it (even if that is not the reason for taking the meds) doesn't seem a good idea to me. I know this from experience!

 

[Grateful]

May I ask what your blood pressure is?

It is slighly elevated. The doctor recorded 130 over 80 at my last medical. I do have a tester at home and recently ran one-week tests (this was done to measure the effect of drinking coffee). I did three daily tests, so it is an average of 21 numbers for each week. With coffee: 129 over 83 one-week average. Without coffee: 128 over 86 one-week average. After which I lost interest in the subject of "high blood pressure" given that these numbers are only slightly elevated, AFAIK.

 

[Bluetit1802]

If you do end up on those tablets you may need to do plenty of BP checks to make sure you are not going too low.

 

[Grateful]

If you do end up on those tablets you may need to do plenty of BP checks to make sure you are not going too low.

It would be ironic if, after dealing with a major chronic disease (T2) entirely without drugs, I ended up having to take BP medication -- even though I don't have high BP -- merely to control kidney stones (which I consider to be a huge and painful nuisance, but not in themselves a worrisome health issue in the absence of actual kidney disease).

 

[Bluetit1802]

It would be ironic if, after dealing with a major chronic disease (T2) entirely without drugs, I ended up having to take BP medication -- even though I don't have high BP -- merely to control kidney stones (which I consider to be a huge and painful nuisance, but not in themselves a worrisome health issue in the absence of actual kidney disease).

Exactly. I am in a similar position. I have recently been diagnosed with an ectopic heart beat resulting in a fast heart rate. Because of this I have been put on a beta blocker. This has done its job. Heart rate right down and as far as I can tell, ectopic beats gone (not confirmed by 24hr ECG as yet) However, the tablets worked over time on my blood pressure, bringing it down too low. Much too low, so my GP halved the dose down to the minimum. I never did have BP issues. Always normal. Now I'm in the position of having to check my BP a few times daily to keep an eye on it. Annoying to say the least. Hopefully the beta blocker will be short term.

 

[ringi]

One option is to take the drugs until your current stones are all dissolved, then see what diet does, along with more tests to see if diet is working.

 

[Biggles2]

I now have an appointment with a nephrologist at the end of the month. I am not happy about the idea of going on thiazides, which are in fact a form of blood pressure medication (which happens, also, to be effective in lowering calcium levels).

Also read up on the effects of Thiazide diuretics on glucose control. The following is from the New England Journal of Medicine (NEJM):

“In these two studies, thiazide diuretics — but not a potassium-sparing diuretic or beta-blockers — impaired glucose tolerance within 4 weeks after treatment initiation. The authors conclude that thiazide diuretics should be used with caution because of the possibility of inducing type 2 diabetes.”​

https://www.jwatch.org/jc201205230000003/2012/05/23/effects-thiazide-diuretics-glucose-metabolism

Another good article from Diabetes Self Management:
'Drugs That Can Worsen Glucose Control':
https://www.diabetesselfmanagement....ement/drugs-that-can-worsen-diabetes-control/

 

[Grateful]

Also read up on the effects of Thiazide diuretics on glucose control.

Yes, I had already come across those studies. I was surprised that the kidney-stone doctor would suggest, to someone with diabetes, a drug that is known to raise BG. I forgot to mention this in my earlier post here....

 

[Bluetit1802]

Yes, I had already come across those studies. I was surprised that the kidney-stone doctor would suggest, to someone with diabetes, a drug that is known to raise BG. I forgot to mention this in my earlier post here....

Statins? Certain Beta Blockers? Steroids when something milder might do? There are lots of them out there and being prescribed.

 

[Grateful]

I had my first appointment with the nephrologist (= kidney expert) today. To my great surprise, the appointment lasted one-and-a-quarter hours. The first 45 minutes was with an assistant doctor, who peppered me with questions about my diet and lifestyle. Then the nephrologist was added to the consultation.

Turns out the level of calcium in my mid-December "24-hour urine test" was extremely high: 433mg/day (the normal range would be 250 or lower). This is in the "red, danger zone" as far as kidney-stone formation is concerned. All of my other urine numbers were very good: "very low risk" of kidney stones.

Anyway, they are running a whole battery of additional tests (blood tests). There are various causation factors for "high calcium in urine" including Vitamin D and parathyroid hormone.

For what it is worth: When I had my first kidney stone in May, the calcium levels in my urine were normal (!!!). The decision today was as follows:

1. Go immediately on a "low sodium" diet, which apparently is about the only dietary mechanism that could lower the calcium level ("low sodium" was defined as less than 2 grams per day). For what it's worth: the 24-hour urine test showed a "normal" sodium level i.e. I have not been over-doing the salt. But they now want me to go explicitly "low sodium."
2. Re-assess a couple of months from now; the doctor was not very optimistic that I could lower my calcium levels sufficiently entirely with diet, but he wanted to give it a try.
3. If it does not work: doctor suggests putting me on thiazides, a class of blood-pressure medication that also lowers calcium and which I would have to take for the rest of my life.

I was, in general, very impressed by the thoroughness of the appointment and their willingness to listen to my concerns, namely, that I firmly believe my kidney stones are very likely caused by my huge change in diet when I got the T2D diagnosis nearly one year ago. They are not rushing to "medicate" me and seemed genuinely interested in figuring out what is going on.

I am awaiting the results of the new tests.....

Edited later to replace "sodium" with "calcium" in the third bullet point in the "decision" paragraph.

Edited to add: When I told the doctor I had heard that thiazides increase BG levels, he said, "only at high doses." The dose he has in mind apparently would not have a major effect on BG....