GFR dropped 5 more points and I don't know why.

Posted by csage1010 (Sue) @csage1010, Sep 22, 2021

HI all, I got some blood work today and I was actually expecting the results to be good, or at least stable. My GFR dropped from 59 to 54 in 2 months. I have lost 20 pounds and my sugars are within normal limits. So sad.

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@flow

I’m sorry about your numbers… I get the anxiety over that. How are all your other numbers. Seems GFR can be affected by so many outside things, that the other indicators need to be taken into account as well. Can I ask you and others how often your Dr is willing to order labs? I’m in my first year of diagnosis at Stage 3 and find I have to practically beg for tests more often than than once every 6 months. And no one orders urine tests unless I insist. Sure it’s due to insurance companies. I wish to track every 3 months in this first year or two to make sure I’m on the right track with changes I’ve made. I’ve recently discovered that if affordable to us, we can order our own testing directly from the labs who process them. No Dr order needed. They cost a little bit but may be worth it to track progress so can adjust our efforts if indicated. Just search labs online to see tests available…. there are many! Labcotp and Quest are two I’m aware of offering this service.

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Be consistent with lab company that you use. Different labs use different calibration equipment

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@dks

I have been having my labs done at a very small lab near me over the past 3 years but am now thinking about changing to a Dignity Health Lab for my next labs.

Do you (or others) have experience with changing labs & were there significant differences in your results?

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I use the local hospital lab company. There was a slight difference in another hospital lab once. I was encouraged to use the same lab consistently

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@codered032

I use the local hospital lab company. There was a slight difference in another hospital lab once. I was encouraged to use the same lab consistently

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Thank you for sharing your experience with labs.

I messed myself up by changing radiologists once for mt DEXA scan for osteoporosis.

I didn't realize it at the time but their machine was completely different than my previous scans from the other radiology company & gave conflicting reports.

I had to beg my Primary to re-order the test for me to return to my previous radiology company & be retested. I paid for that 2nd test out-of-pocket.

This experience makes me cautious now.

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@codered032

Be consistent with lab company that you use. Different labs use different calibration equipment

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Really good advice! Thank you.

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@badriv

My doctor nephrologist in PA was willing to order blood every 2 months, no issues. No urine or other tests ordered. Don’t think the dr will object to other tests if requested. I meet the dr every 3 months at stage 3b/4 . They say it’s stable but eGFR swings between 27 to 32 and back down in that range. Not sure if my diet is making any difference to improving eGFR ( diagnosed IGA nephropathy) God damn kidneys!!!

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@badriv Continue on a renal diet that works for you. I am sure it will help you. Might not be as tasty as you like, may not be as varied as you like, but the results can be good. I kept to a renal diet for years before the doctors told me to follow one. In fact, they told me such a regimen wasn't necessary, but I argued that point.

@windyshores Drops and change in eGFR can be confusing. Different machines processing the sample, your hydration level at time of the sample, medication changes, even not feeling well due to allergies or illness, can affect the results, as can changes in the underlying cause of your kidney disease. It doesn't take much, I know!
Ginger

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@reecie1950

Mine dropped 19 points since last August, and 6 points in last two weeks.

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Good morning. My situation is very familair to yours. July/2022 mine was 78. April 2023 it went down to 64. Very recent blood work 05/30/2023 it went down to 53. It has dropped 25 numbers in 10 months. I am righteously very worried! My Doctor did "Admit" my Kidneys are stressed, but does not seem concerned~ I go back for blood work in June with a urine test which I requested. You would think with this drastic drop, my Doctor would have requested it! I hope yours gets better. What I have been reading, many on this forum have had sudden crashes with their Kidney numbers.

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@gingerw

@badriv Continue on a renal diet that works for you. I am sure it will help you. Might not be as tasty as you like, may not be as varied as you like, but the results can be good. I kept to a renal diet for years before the doctors told me to follow one. In fact, they told me such a regimen wasn't necessary, but I argued that point.

@windyshores Drops and change in eGFR can be confusing. Different machines processing the sample, your hydration level at time of the sample, medication changes, even not feeling well due to allergies or illness, can affect the results, as can changes in the underlying cause of your kidney disease. It doesn't take much, I know!
Ginger

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Thanks @gingerw. Same machine, and I hydrated for two out of three of the last three tests (all in one month). Hydration raised it from 36 to 41. I didn't take any meds within a few days of the test but you never know what could be lingering in the blood! I am trying to find out the the underlying cause because I have lupus and a recent positive test for scleroderma, both of which can affect the kidneys. Changing my diet and avoiding all NSAID's!

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GFR @ Mid 40s is Stage 3 approaching Stage 4 CKD. See a urologist ASAP. I have done extensive research. Stressed does not begin to describe your kidney disease at GFR of 40 or below.

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GFR is very susceptible to hydration changes. If you’re even slightly dehydrated, in my experience, your GFR could have dropped 5 points. My Nephrologists have always said Creatinine is a better indicator of kidney function.

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Went to ER for something else and hadn't had much water all day due to nausea, so of course eGFR back down to 37 from 42. I don't pay much attention to specific changes, more to trends, which unfortunately are downward. Seeing nephrologist this week, finally. It is important for me now to consider kidneys with medications (I have a Reclast infusion scheduled 7/10 at 20% dose), food (I eat a lot of protein) and hydration. Paxlovid should be at a renal dose if needed. I decline contrast for imaging at this point and tests affirm that. No more flurbiprofen: I need to consider other pain relief (massage, lidocaine injections?). I have one, probably two autoimmune conditions that can affect kidneys so have to pursue that.

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