Kidney Ultrasounds and other tests....Lessons to learn from

[Marvin8]

Folks,

I was diagnosed with CHRONIC KIDNEY DISEASE (!) by my PCP just over three years ago with a creatinine-based eGFR of 55. I'm 61 years old. Of course, I flipped out...and I mean REALLY flipped out. Can't even begin to estimate how many DAYS (not hours) I've spent researching the internet about CKD, the natural course of things, how long I have to live etc. etc. etc. As is typical, I had my PCP repeat the blood work a month after diagnosis, and wouldn't you know, it comes back as >60...the magic number. Phew! But then I looked at my old charts and saw that my eGFR was at 75 just 4 years earlier. NOT a good trend. Worry time once again. How much does eGFR tend to decrease each year? How long til dialysis? How long can you live on dialysis? Lions, tigers, bears...OH MY!!!

But WAIT!...I found some REALLY old test results back from 1996. My creatinine levels were 1.2 twenty four years ago, which was within the reference range. That's right, 1.2. And what were my results from two weeks ago.....1.3. Yes, twenty four years later, my creatinine increasing from 1.2 to 1.3....and I didn't even fast two weeks ago. But I'm getting ahead of myself....

When I was first diagnosed, my PCP also suggested that I should go for a kidney ultrasound for CKD confirmation. Absolutely!, I said. Of course, in order to get insurance to pay for it, I needed to have a diagnosis. So she writes CHRONIC KIDNEY DISEASE on the order form. I bring the order to the ultrasound technician, she takes one look at it and BAM....both she and the radiologist are biased toward finding supporting evidence. I mean, who are THEY to disagree with my PCP, right?

Here's the report from 3 years ago;

FINDINGS:

EXAMINATION: US KIDNEY BILATERAL

HISTORY: Chronic kidney disease stage III.

COMPARISON: None.

The RIGHT kidney is atrophic measuring 9.2 cm. The LEFT kidney is within normal limits in size measuring 10.0 cm. There is mild bilateral increased echogenicity of the kidneys consistent with medical renal disease. No focal lesion or hydronephrosis is seen. There are finding suspicious for a possible left lower pole renal calculus.

IMPRESSION:

Minimal atrophy. Findings consistent with mild medical renal disease. Possible left lower pole renal calculus.

So according to the ultrasound, I have CKD. Then it was time for a trip to the nephrologist. He basically said I have some mild scarring and damage. No need for a biopsy. Watch my salt and protein intake, make sure I drink at least 2 liters of water a day, keep an eye on my blood pressure, maybe take a low dose ACE. Mind you, I've had 130/80 blood pressure for at least 24 years, probably due to constant dehydration and lack of aerobic exercise. 130/80 used to be called normal.

Flash forward to today. I just had new labs and requested an ultrasound again. But but but...THIS time, I told my new PCP NOT to write "chronic kidney disease" on the order form. Instead, I told him to write "kidney stones" so as not to bias the technician or radiologist. Here is the report;

Labs: Creatinine 1.3

Ultrasound:IMPRESSION: Questionable small bilateral non-obstructing renal stones.

Narrative

US RENAL - 2/20/2020 2:55 PM

Indication: Nephrolithiasis.

Comparison: None

Technique: Abdominal ultrasonography. Obtained images are permanently stored in PACS.

Findings: The kidneys measure 9.8 x 5.8 x 4.4 cm on the right and 9.3 x 5.2 x 5.3 cm on the left. No hydronephrosis is evident. The renal contour and cortical echogenicity are unremarkable. There are microscopic reflective foci of the renal sinus fat of both kidneys consistent either with tiny non-obstructing stones or vascular calcifications. No masses are found in the urinary bladder. There are bilateral ureteral jets.

My Summary: My PCP said to look for stones, so the radiologist found some stones or whatnot. More importantly, the radiologist DIDN'T find echogenicity this time around, which is a hallmark of CKD on ultrasound. I have indeed had two stones in the past which probably caused some damage, and the radiologist did notice the same tiny potential stones as three years ago, but the takeaway from this is the lack of echogenicity. Three years ago, my kidneys were abnormally echogenic, which confirmed the diagnosis of CKD. This time, no echogenicity. That's great, but what gives?! Even crazier, look at my kidney sizes. Although a bit small, notice that the radiologist did not use the word "atrophic". That's another buzzword that signifies shrinking kidneys, which is normal for CKD. But here's the bigger takeaway: Did you notice that the sizes of my kidneys are completely reversed from the ultrasound three years ago!!!! DOCTORS, TECHNICIANS, AND RADIOLOGISTS MAKE MISTAKES!!!...and they do so frequently.

Don't take what ANY of these folks say as gospel unless it's double-checked, verified, then run by another doctor for a second opinion. You really need to be your own advocate.

I've also found something to put my mind at ease, and that is to request a Cystatin-C test. Cystatin-C is another byproduct marker for CKD, but the advantage over creatinine is that it isn't affected by muscle mass, sex, race, and the other factors that creatinine is. Although my creatinine-based eGFR over the last three years has put me at levels ranging from 52-59 (it's 59 as of last week), my Cystatin-C levels put me at an eGFR of 77. Combining the two (there are indeed formulas that do this), which is probably the most accurate estimator, puts my eGFR at around 68. Combine that with my nephrologist's opinion, and I'd characterize my kidneys as generally a bit crappy, prone to stones, and need to be gently taken care of, but that I'm not gonna die of kidney disease this year or probably next or probably the year after that if I take care of myself. My goal is to try to live life as best I can, try to stay by eating right, exercising, and hydrating, and try to make my kidneys last until they come up with a decent artificial kidney or stem cell treatment. Do I have crappy kidneys? Yes. Do I have CKD? Probably, but perhaps a gentler label is more befitting.

[RickHow]

Yours is one of the most interesting and comprehensive posts I have read. And in many cases reflects my own experience. The hours and hours of panic and searching the internet when first labelled CKD Stage 3b! My kidney function was all normal. Then a cancer tumor on one kidney caused its removal. The next morning they labelled me CKD stage 3b. My PCP said I have to see an kidney doctor immediately. My creatinine was 1.7, 1.8. I see the kidney doctor. I get the typical speech of low protein, drink water, blah, blah, blah. Now in preparation for the kidney removal I naturally had ultrasounds and tests. All the reported was large non cancer cyst on one kidney (the good one), and tumor (cancer) on the other. No mention of any other problems. After operation I had followup ultrasounds. All simply reported size, etc., of existing kidney. But no severe problems except the large non cancerous cyst. Then 2 months later another ultrasound. Huge letters of echogenicity on the kidney as a result of long standing kidney disease. WHAT?? Many ultrasounds with no such report, now it is reported and it says it has been there for a long time from disease?

The kidney doctor said this is scarring. I asked why never mentioned before. She had no comprehensible answer. My PCP shrugged his shoulders. My creatinine was by this time a fairly consistent 1.7. My next appointment with PCP, he was on vacation. I saw a fellow PCP. Who I now see. He explained it all. He hates the egfr labelling. He said first of the echogenicity that to just ignore it. At age 70 this will be the case on almost everyone. And most technicians don't even bother to report it unless significant. Others are more intense and report everything. So it all just depends on who is reporting the data. Usually unexperienced report it all the time. Experienced make a judgement if it is severe enough to mention. That is why one report no mention, then next mention, then next no mention. As for my creatinine, that it is highly unusual for a person with one kidney, unless youthful, to have "normal" creatinine levels. 1.7 or 1.8 is to be expected and quite normal. You can not expect one 70 year old kidney to do the complete task that 2 kidneys used to do. My creatinine has remained constant for almost 3 years, in fact lately has been 1.5 or 1.6. I mentioned all this new info from the new PCP to the kidney doctor. She says, yes it is all true. The ultrasound, the creatinine, etc. WHAT? For 2 years you never mentioned this? And I've been called CKD 3b because of some formula based on what is "normal" for a man my age. But that normal is for a healthy man with 2 kidneys and normal aging? So many are living in fear, panic because of the crazy formula, the reports of technicians just as you described.

[Marvin8 in reply to RickHow]

Thanks for that very thoughtful reply, Rick. I came across your similar post yesterday and had to chuckle. Wish I'd seen it sooner. FYI, I spoke to my neighbor who is a kidney transplant recipient in her mid-50's. Got her kidney about 5 years ago and her creatinine is now a bit over .90. I wonder what age the kidney donor was. Then again, this woman weighs 85lbs dripping wet and hardly has any muscle mass. Like I wrote above, folks should really ask for a cystatin-c test and plug it into the combo formula. It's best used as a confirmation and for prognosis according to the literature. If your cystatin-c eGFR is higher than your creatinine eGFR, that bodes well for the prognosis of heart disease and sliding into renal failure. Conversely, if your cystatin-C is lower than your creatinine eGFR, this bodes more poorly. Stay well, my friend. We think alike. And btw, if you search the literature within the last couple of years, you'll find some really prominent nephrologists who absolutely ABHOR the eGFR category label of 3a automatically meaning kidney disease.

[RickHow in reply to Marvin8]

Thanks...keep in touch as you wander through this adventure :).

[Marvin8 in reply to RickHow]

Thanks, and you as well.

[sidrajamalfarru]

Hello Marvin8!

Your post gives me some hope. We should go and check out the kidneys at a random hospital again with out mentioning our disease now what I learned from your post. Take a neutral check up with out mentioning the radiologist earlier the diagnosis it will be fair enough with us. Otherwise they will just right something on the basis of the diagnosis the nephrologist do earlier "Renal impairment stage 3 CKD". Surely we will find some positive and better results of ultrasound.

Thanks again.

Bye.

👍😊

[DaveThebe]

Hi Marvin,

Your story is similar to mine. To say I was terrified when my PCP told me my eGfr was 52 back in June 2019 is an understatement. I spent hours scouring the internet learning about my situation. I'm a bit relaxed now but I still worry now and then as I have a young family (I'm 41) I did ask for a cystatin C test after seeing your previous post. Here's my latest results.

Creatinine egfr - 71

Creatinine-cystatin egfr - 77

Cystatin C egfr - 83

My three consecutive Creatinine egfr are 62, 66, 71

My nephrologist says she can't confirm CKD, have to monitor once a year.

Thanks for your post.

[Marvin8 in reply to DaveThebe]

You're more than welcome. You're gonna be just fine. Keep an eye on things, stay hydrated, eat well, and exercise. Your prognosis is very good. I'd do labs every 6 months to be on the safe side. If your numbers take an abnormal dip, I'd go for an ultrasound, but be sure to have your PCP or neph put something other than CHRONIC KIDNEY DISEASE on the order form.