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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@macbarb0503

Thanks for the information. I called the nephrologist’s office, and was told they’ll look at my labs and call if they think I need an appointment. I think I need an appointment, after losing at least 11 GFR points in a short period of time. I’m in FL and am beginning to wonder if they wait until we’re ready for dialysis or a transplant where the big money is to bother with us. I’m elderly and won’t be getting a transplant. We don’t have enough doctors here for all the people. I just want to know what’s causing this, and how to slow it down. Don’t doctors try to diagnose the problem, prescribe medicine or anything? They just seem to want to ignore me.

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@macbar0503 I had a dip from GFR (creatinine based) of 55 to 36 in a short period of time. It is back to 51. We are still in a relatively okay state with kidneys in stage 3A (and stage 2 is normal for those of us of a certain age).

Have you had a Cystatin C GFR done? For me that was much better which led my doc to think of other causes of the bouncing GFR based on creatinine. (And bouncing around is normal, especially with differences in hydration).

My blood pressure is low and nephrologist had me do an echocardiogram to make sure my heart is working well. Both these factors can cause a lower eGFR.

I am hydrating more and stopped all NSAIDS, only tylenol. I halved my B vitamins and potassium intake. I increased salt and protein. Salt raises blood pressure and protein addresses muscle mass loss, which can lower the creatinine based GFR.

You are wise to avoid IV contrast though ingested contrast might be okay if really needed. Good luck!

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@windyshores

@macbar0503 I had a dip from GFR (creatinine based) of 55 to 36 in a short period of time. It is back to 51. We are still in a relatively okay state with kidneys in stage 3A (and stage 2 is normal for those of us of a certain age).

Have you had a Cystatin C GFR done? For me that was much better which led my doc to think of other causes of the bouncing GFR based on creatinine. (And bouncing around is normal, especially with differences in hydration).

My blood pressure is low and nephrologist had me do an echocardiogram to make sure my heart is working well. Both these factors can cause a lower eGFR.

I am hydrating more and stopped all NSAIDS, only tylenol. I halved my B vitamins and potassium intake. I increased salt and protein. Salt raises blood pressure and protein addresses muscle mass loss, which can lower the creatinine based GFR.

You are wise to avoid IV contrast though ingested contrast might be okay if really needed. Good luck!

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Thanks for your reply. I’m glad your doctors are doing the tests needed to help you. I don’t know if I’ve had a Cystatin C GFR test. Test results come in a portal that’s hard to navigate, but I’ll look again. I’ve wondered if low blood pressure could be the cause. My BP is all over the place. The bottom number is often too low, but the top one is always okay or too high, and I have no symptoms like dizziness. I can’t imagine how low it goes when I’m sleeping. I don’t think there’s a way to raise it is there? I do moderate cardio at least 40 minutes most days. Neither my primary doctor or the kidney doctor seem interested in finding out what’s wrong. I wasn’t concerned when the GFR was over 60, but except for one over 60 reading, it’s gone down consistently for years, and within the last few years it’s dropping fast. Maybe there’s just nothing they can do. I’m 78 and shrinking. I read shrinking kidneys can cause this too. It just doesn’t seem like we should have to guess or figure out what’s wrong on our own.

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I’m sorry that happened. Do you know what caused it? I hope your next lab results are better.

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@macbarb0503

Thanks for your reply. I’m glad your doctors are doing the tests needed to help you. I don’t know if I’ve had a Cystatin C GFR test. Test results come in a portal that’s hard to navigate, but I’ll look again. I’ve wondered if low blood pressure could be the cause. My BP is all over the place. The bottom number is often too low, but the top one is always okay or too high, and I have no symptoms like dizziness. I can’t imagine how low it goes when I’m sleeping. I don’t think there’s a way to raise it is there? I do moderate cardio at least 40 minutes most days. Neither my primary doctor or the kidney doctor seem interested in finding out what’s wrong. I wasn’t concerned when the GFR was over 60, but except for one over 60 reading, it’s gone down consistently for years, and within the last few years it’s dropping fast. Maybe there’s just nothing they can do. I’m 78 and shrinking. I read shrinking kidneys can cause this too. It just doesn’t seem like we should have to guess or figure out what’s wrong on our own.

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@macbar0503 I am in my 70's and would never expect a GFR to be above 60. I didn't seek a nephrologist until I hit a GFR of mid-30's. I think anything in the 50's is not seen as a big problem. But a sudden drop might be something to look at in terms of hydration and medications you take.

The GFR goes down with age, normally, I have been told.

I have an autoimmune disorder and I needed to check my kidneys out for that reason. I am reassured and hope you can be too.

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@windyshores

@macbar0503 I am in my 70's and would never expect a GFR to be above 60. I didn't seek a nephrologist until I hit a GFR of mid-30's. I think anything in the 50's is not seen as a big problem. But a sudden drop might be something to look at in terms of hydration and medications you take.

The GFR goes down with age, normally, I have been told.

I have an autoimmune disorder and I needed to check my kidneys out for that reason. I am reassured and hope you can be too.

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I’m happy for you that you’ve been reassured, and thanks again for taking the time to reply. I’m not concerned that the GFR is 49, only that it drops so fast in such a short time. we’ve been told not to, but since no doctor has discussed it with me, I looked on the Internet and read a loss of more than 2 points in a year is severe loss of function. That may or may not be right. When I first learned it was CKD I had lost 11 points in 8 months. My concern is that if it keeps falling so fast it will lead to dialysis before long, I also read that if a person has certain medical conditions they can’t even go on dialysis.

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I'm drawn to this area of research because my GFR (based on creatinine I believe) had dropped from 54 to 47 over a few months. Two insights I've seen are: While GFR is a preferred measure of kidney function, it doesn't provide the best measure of ""disease severity", the better measures are proteinurea and albiminurea. That coud be a discussion to have with your specialist. I'll be looking at that at my next visit.
The other revelation seems to be that kidney disease is at least partly related to inflammation, so that's one factor to look at.
I believe the studies that contained those http://www.sciencedaily.com
Two other studies found that substances that can tame inflammation can cause improvement in kidney function. Get ready to disbelieve: baking soda is one substance that has apparently shown some efficacy; while curcumin (2 500 mg doses per day—taken with a soluble fat because it doesn't easily pass into the bloodstream—can also have multiple positive effects on sensitive organ structures. I also have neuropathy in my legs so I'm experimenting with curcumin. Sometimes it seems to be working. I'll know after a month or two.
Wishing you the best!

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Again I went from 55 to 36 in three months. Drops like ours need to be investigated. These tests do bounce around but the Cystatin C was steady.

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@macbarb0503

Thanks for the information. I called the nephrologist’s office, and was told they’ll look at my labs and call if they think I need an appointment. I think I need an appointment, after losing at least 11 GFR points in a short period of time. I’m in FL and am beginning to wonder if they wait until we’re ready for dialysis or a transplant where the big money is to bother with us. I’m elderly and won’t be getting a transplant. We don’t have enough doctors here for all the people. I just want to know what’s causing this, and how to slow it down. Don’t doctors try to diagnose the problem, prescribe medicine or anything? They just seem to want to ignore me.

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@macbarb0503 Sounds like you are now in control.

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Same,only lower (47). Nephrologist pulled me off all supplements (was taking a B1, B12, and others recommended by Peripheral Neuropathy “Specialists”), and immediately stopped any NSAIDS (meloxicam for arthritis). Statins, ADD med. reduced water intake to 50 oz (I’m now 165lbs). eGR shot back to 60 within 1 month (which has been normal for me for years. Hope this helps. work with your nephrologist right now, take responsibility for leading and coordinating your “team” of physicians (they don’t do it as a matter of course).

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@pursuingwellness

I'm drawn to this area of research because my GFR (based on creatinine I believe) had dropped from 54 to 47 over a few months. Two insights I've seen are: While GFR is a preferred measure of kidney function, it doesn't provide the best measure of ""disease severity", the better measures are proteinurea and albiminurea. That coud be a discussion to have with your specialist. I'll be looking at that at my next visit.
The other revelation seems to be that kidney disease is at least partly related to inflammation, so that's one factor to look at.
I believe the studies that contained those http://www.sciencedaily.com
Two other studies found that substances that can tame inflammation can cause improvement in kidney function. Get ready to disbelieve: baking soda is one substance that has apparently shown some efficacy; while curcumin (2 500 mg doses per day—taken with a soluble fat because it doesn't easily pass into the bloodstream—can also have multiple positive effects on sensitive organ structures. I also have neuropathy in my legs so I'm experimenting with curcumin. Sometimes it seems to be working. I'll know after a month or two.
Wishing you the best!

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what is your weight and how much baking soda. it makes sense…

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