Good morning, everyone!

To sum up the reason for this title of this post....

I have had T1 X 44 years. I got it relatively well-managed 5 years ago. Since doing so my eyes have improved to 20/25 both sides without contact/glasses while 5 years ago I was legally blind without correction.

So, numbers good for sugar, cholesterol.

Proud of myself for getting it done. Now, kidney function tests:

GFR: 38
Creatinine: 1.8
BUN: 25

I am afraid I am having a WTF day.

Doctor's office called to tell me to see a nephrologist. I SAW a nephrologist last year because the numbers were becoming concerning. Good ole neph says it is idiopathic and not related to DM at all.

Anyone else have this kind of stuff going on? If it was related to my sugars, I could, maybe, understand. But idiopathic? Seriously? (means they have no idea why my kidneys are being buttheads.)

THank you all for listening.

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Believe it or not, the study of kidney disease is still fairly new. There are an awful lot of cases of ideopathic kidney disease. The bottom line is that the cause doesn't really matter (unless you need to get your sugars under control or stop using ibuprofen) because the treatments are the same. It is still possible that your kidney disease is due to the diabetes. It can take a long time of damage before things show on your blood work.

But, as I said, from now on in the cause doesn't matter. You need to cut back on sodium, animal protein, watch your bp (maybe take an ACE inhibitor or an ARB which are shown to be protective), and not take things like Advil.

I was predialysis for over 20 years (had protein in my urine from when I was 16), was on dialysis for a year, and then had a transplant over 10 years ago. If you have any questions, just ask.


Thank you, Cora!

I DO have questions... I always have questions. sorry?
I haven't done the ibuprofen since my GFR reached in the 50s. Was taking a 'pril (ACEi), and it made my K+ (potassium) go up to dangerous levels. So, started furosemide (Lasix) to waste the K+ and lose some water (was retaining). Numbers continued to head toward the commode, so one day decided to stop the meds. (I know, only discontinue meds on a doctor's advice....). Anyway, BP instantly went back to normal, K+ to normal, water left, and the doc's office called after my labs were drawn to ask what I had done. All kidney tests were normal! I told them and they said they had wondered how long that would take. (I did not question that then, but do now). So, now, after 6 months of no meds, the numbers are going funky again. So, I started back on the ACEi at a small dose, and it is being effective on the BP. Maybe being ACEi naive again will make the med more effective, too. WHO KNOWS?
Self experimentation? you bet.

Cora, I am SO glad you got a kidney! That is the route I would consider if/when it gets to that point. I know some people can live just fine with a GFR as low as even 8. Time will tell.

Again, thank you so much for your answer and support.


glomerular disease is normally caused by meds or toxins.Diabetic nephropathy is also another cause,Idiopathic primary renal hematuric or proteinuric syndrome what ever the condtion is,Since the underlying causes of this syndrome are so poorly understood, there is no known prevention like cora i to suffer with kidney problems,A percutaneous nephrostomy is what i have sone every 6 months to make sure my other kidney is still working and is the best way of finding out if there is any damage.But my problems where caused by having D,You need to a nephrologist but may some who understands diabetes better.Yes there can be other causes like having a high BP also,I wish you all the best of luck




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