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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@csage1010

Thank you. I'll try to relax, sometimes it's difficult.

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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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@gingerw

@reecie1950 Welcome to Mayo Clinic Connect. Have you sought the care of a nephrologist [kidney care specialist] yet? Decreases in eGFR can be caused by kidney disease brought on by the two main causes of high blood pressure and diabetes, or factors like genetic tendencies, lifestyle choices, etc. Basically, doctors will look at trends rather than a specific lab result, unless there is an acute situation. Also, hydration can play a big part in the test results, as can a different in the actual laboratory/equipment used to process the samples.
Ginger

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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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@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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@dks In my experience, even within the same lab, they can use different machines, based on what testing is being done. While the equipment is calibrated, there might be small differences. And, in most situations, the lab marks down the patient's age/gender and fasting/non-fasting indications. As you no doubt have read within these threads of conversation, it is best to look at trends, not a single set of results.

I am curious why you are considering changing labs?
Ginger

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@gingerw

@dks In my experience, even within the same lab, they can use different machines, based on what testing is being done. While the equipment is calibrated, there might be small differences. And, in most situations, the lab marks down the patient's age/gender and fasting/non-fasting indications. As you no doubt have read within these threads of conversation, it is best to look at trends, not a single set of results.

I am curious why you are considering changing labs?
Ginger

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Thank you for your reply, Ginger!

In the case of my blood work, the lab I've been going to is very tiny & I was referred to go there by my previous doctor (whom I'm no longer seeing). Last week when my husband went there for his labwork, he was not impressed with the way it was handled. So, I was thinking that maybe I might check out the Dignity Health Lab, which is a much larger medical association in our area. I'm not looking for a different outcome regarding my CKD, just possibly a better experience.

Thank you for answering my question as to the results most likely not differing b/c that was a fear of mine: that they might differ by quite a bit & that would then be very confusing.

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@randyr

I was diagnosed with Stage 4 CKD in 2018 with a GFR of 15 and Creatinine of 3z8. I’m now at Stage 3b with a GFR of 42 and Creatinine of 1.77. I’ve found GFR is very susceptible to hydration levels, so I wouldn’t be overly concerned about a 4 point drop, especially if you’re hydrating well. My Nephrologist believes Creatinine is a much more reliable indicator than GFR. I drink 3L of water a day.

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I would like to know how you improved your egfr and creatinine so much. My husband has stage 4. Egfr is 19 and creatinine is 3.3. At his appointment last week we saw a PA who acted like he would be needing dialysis very soon. Sent him to a kidney class which gave us nothing new. The nephrologist we normally see has been telling us he is stable. Now I do t know what to think. We are goi g back to talk to the doctor again.

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@anet

I would like to know how you improved your egfr and creatinine so much. My husband has stage 4. Egfr is 19 and creatinine is 3.3. At his appointment last week we saw a PA who acted like he would be needing dialysis very soon. Sent him to a kidney class which gave us nothing new. The nephrologist we normally see has been telling us he is stable. Now I do t know what to think. We are goi g back to talk to the doctor again.

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First, I would consider finding a new Nephrologist. My first Nephrologist wanted to put me on the transplant list when I was first diagnosed. I said no. After my initial diagnosis, I was on EPO to raise my hematocrit which was at 21. That lasted for 18 months. I’m now in the 40’s. I also immediately went to a low oxylate diet as that’s what caused my damage (oxylates). That, along with 3-4L water a day gave my kidneys the opportunity to improve my Creatinine and GFR. The only protein I eat are chicken and eggs. Hope this helps.

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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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I asked my nephrologist to prescribe my tests every three months. He had no problem with it. Six months is too long to wait to see if the changes you've made are having any effect.

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@randyr

First, I would consider finding a new Nephrologist. My first Nephrologist wanted to put me on the transplant list when I was first diagnosed. I said no. After my initial diagnosis, I was on EPO to raise my hematocrit which was at 21. That lasted for 18 months. I’m now in the 40’s. I also immediately went to a low oxylate diet as that’s what caused my damage (oxylates). That, along with 3-4L water a day gave my kidneys the opportunity to improve my Creatinine and GFR. The only protein I eat are chicken and eggs. Hope this helps.

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Thank you.

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My eGFR dropped from 50-55 to 36-41 in 6 months. I cite two tests because I drink more water and have a second test each time.

I have never seen a nephrologist and my doc misread the repeat tests of 36 and 41 in one week, to being over longer time and wrote me things were "stable."

I made an appointment with a nephrologist. I have systemic lupus that has never manifested with organ damage, was treated for breast cancer, my blood sugars are somewhat erratic (I am very thin). and I am on Tymlos for osteoporosis, a med that can cause kidney stones from high calcium but does not seem to cause kidney damage. I occasionally take flurpriprofen an NSAID. but very rarely.

The drop is significant and mysterious. I need to ask about my next bone med, Reclast (endo will do 20% dose to start), contrast with imaging, and dose of Paxlovid if needed. And what meds to avoid.

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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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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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