The crazy "egfr" formula for CKD - Early CKD Support

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The crazy "egfr" formula for CKD

RickHow profile image
18 Replies

I see several doctors. Primary care, oncologist, urologist, kidney, cardiologist. I am always surprised how universally they speak against the CKD/Egfr staging system. The way my primary care doctor puts it is it puts far, far, too many people into being labelled with a kidney disease (especially stage 1, 2, 3) and causes more unfounded fear than it does good. Here is my example that happened just yesterday. Due to the cancer I get my blood tested every 3 weeks, before a treatment. Consistently for months my egfr has stayed at 43 (stage 3b). Nothing has changed in my diet, routine, medications, etc. But the day before my test yesterday, I celebrated a birthday. The effect on my egfr?? I suddenly was stage 3a!! Because my creatinine dropped a mere tenth of a point and I was "a year" older. The good of the formula, is over time it can identify kidney health, if you suddenly see a dropping in you classification. But it really does not fairly identify your kidney health in general. You can take a test one day and be labelled a certain level. Then for two days be sure to consume 64 to 100 ounces of water each day. Then have a test. Your creatinine level will have dropped (due to water), your egfr will likely be better, but did you kidney get healthier?? No. The message my doctors make clear. Forget the egfr. Monitor your creatinine over time and look for consistency and all is well.

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RickHow
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18 Replies
Ladony profile image
Ladony

Hello RickHow,

My nephrologist said something different... "even if your creatinine might stay the same and at a good number... the egfr and the filtration of your kidney will tend to diminish due to the natural aging process....

Celtic profile image
Celtic

I couldn’t agree more, Rick - it’s always been a bugbear of mine. In fact, I never had an abnormal reading of my creatinine levels until I was put on Losartan Potassium several years ago. The next blood test showed raised creatinine. When I queried this with my renal consultant he said it’s quite usual to see a small increase in creatinine in patients taking Losartan. Quite “normal” it may be but as the eGFR figure is calculated from the drug-induced raised creatinine result, then to my simple mind the eGFR may not be a complete picture of my eGFR level (44 at present). They cover themselves with the ‘e’ = estimated!

Belated happy birthday wishes!🎂

Marvin8 profile image
Marvin8

You're right on the money, mate. My PCP diagnosed me with high Stage 3a three years ago with an eGFR around 60. Creatinine was around 1.26. Now it's 1.36 and my eGFR is 56. My neph doesn't give much weight to eGFR. He mostly looks at my creatinine and other labwork. Says that my creatinine 20 years ago was 1.1 and now it's 1.36. To him, it's no big deal....and we don't even know what caused the damage although we suspect kidney stones, anti-inflammatories, and lack of proper hydration. Of course, I'm now perpetually afraid of dialysis because I....HAVE....KIDNEY.....DISEASE. I now make sure to get my Cystatin-C tested in order to corroborate the creatinine numbers. My cystatin-C was pretty good last time, and when combined with creatinine, my eGFR is around 70....which I'll take. There are also some nephs who believe that the whole eGFR scale is wacko and making folks needlessly worry when there's nothing really wrong with their kidneys. Look it up and you'll see. Bottom line: The present state of nephrology SUCKS.

Celtic profile image
Celtic in reply toMarvin8

Good that at least “some nephs” are on side with our view. Would be even better to hear that they are being proactive behind the scenes in bringing about change. That might be in a perfect world though!

I told one renal consultant soon after my diagnosis some years ago that the very title “chronic kidney disease” was misleading as it wasn’t a disease as such. His reply: “ That’s the name the Americans gave it and we have to live with it”! My friend’s GP told her several years ago that the Government had opened a can of worms when the new eGFR test became routinely used, with many patients subsequently diagnosed with CKD and rushing off to renal consultants in fear. Things seem at a stalemate.

RickHow profile image
RickHow in reply toCeltic

well said

Bunkin profile image
Bunkin

Hey how are you doing?

WYOAnne profile image
WYOAnne

When I was diagnosed in 1992 with CKD, they didn't measure GFR. They would measure creatinine combining it with a 24 urine collection and come up with creatinine clearance. So , when I was first diagnosed my kidney function was at 50% and my creatinine was about 2.0. They didn't start the eGFR measurement until sometime after 2000. Creatinine and GFR can both be influenced by how hydrated you are. And of course the number changes with age. Wonder if there will be a more accurate way someday to measure how well your kidney works

Marvin8 profile image
Marvin8 in reply toWYOAnne

Are you on dialysis now or have you received a new kidney?

WYOAnne profile image
WYOAnne in reply toMarvin8

I am living well with my deceased donor kidney since 1999! So, had my 20 year transplant anniversary in October!

Marvin8 profile image
Marvin8 in reply toWYOAnne

AWESOME to hear. Congratulations!!!! Out of curiosity, how many years were you on dialysis?

WYOAnne profile image
WYOAnne in reply toMarvin8

I was one of the lucky ones - I was on hemo for 6 weeks when I got THE CALL!

Marvin8 profile image
Marvin8 in reply toWYOAnne

OMG were you lucky!!!!!!!!!

WYOAnne profile image
WYOAnne in reply toMarvin8

YES, but I don't think luck had anything to do with it! My parents in Heaven were pulling for me. My kidney - was a 4/6 match from a deceased donor. Was told, that the life expectancy of this kidney was 12-15 years. Here I am, by the grace of God, 20 years later!!! My creatinine is stable at 0.9!

Thinking of you....Merry Christmas!!!

Marvin8 profile image
Marvin8 in reply toWYOAnne

That's absolutely fantastic!

RhenDutchess123 profile image
RhenDutchess123

My Nephologist does the labwork...whether things improve or decline he is more concerned on how I feel.............

The eGFR shows that your kidneys are not filtering at 100% no matter the reason the filtering ability is less than it should be. I have stage 3 and I agree it is frustrating because it is an estimate and I would like a much more specific filtration rate. However, I also know that no matter the eGFR I still have lost kidney filtering ability and the chances of that returning to 100% is slim to none. So, I make the health changes to keep the function that is left without further damage.

orangecity41 profile image
orangecity41

I agree on eGFR, as being older. It is an estimate. Other blood tests come into play. Guess they figure for one's age you are doing ok? One's real age can be different. There is a GFR test.

Playnejayne profile image
Playnejayne

I've wondered about this...🤔

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