Why take NOT take notice when eGFR is under 90 rather than 60?

Apparently kidney disease is on the increase. Or maybe more people are becoming aware of it. There are so many reasons for kidney disease: diabetes, hypertension, genetic causes, other conditions and the associated medications, dietary habits can be a contributing factor, hydration….. I’ve been told that an eGFR of 60 - 90 is good. Nephrologists often don’t even see patients until the eGFR is below 60. Many times a PCP doesn’t make a referral to nephrology until the eGFR is in the 40’s or 30’s. Many patients don’t know what their lab results mean and don’t know to seek help because there aren’t obvious systems with kidney disease. What is your eGFR now and how are you feeling? Are you happy with the nephrologist you found?

Hi Cheryl, @cehunt57, thank you for replying.

My eGFR: last week 62; 6 weeks ago and 6 months ago 48; one year ago 74. Since 2017, its been jumping around from a high of 74 to low of 48 6 months ago.

Up until 2 years ago, I was working for a nonprofit 50-60 hours a week with no problem. I've been out of work for another unrelated issue since then. In the last 6 months I have been tired and recently light headed.

Since 2017, my Creatinine has been bouncing around from .87 to 1.25 which was my highest twice this year, but a few weeks ago it went down to 1.0 - I went off Fenofibrate 2 weeks earlier. I do have high protein and iron.

I can tell you these numbers as I just finished inputting the numbers into a Google spreadsheet which really helped putting this into perspective. I'm now doing it for my husband as I took a closer look at his blood tests...that's for another posting. 🙂

I see the Nephrologist next month-only met him in January. He is very nice and spends time and listens. He became a Nephrologist a few years ago from a major med school/teaching hospital.

@kathymiami You pose a great question! Most primary care doctors do not have a wealth of knowledge about kidney disease, because it is so specialized. As @cehunt mentioned, there can be different causes of chronic kidney disease, the two big ones being diabetes and high blood pressure.

From the American Kidney Fund, here is a breakdown of the stages of kidney disease: https://www.kidneyfund.org/all-about-kidneys/stages-kidney-disease

We as kidney patients, know the value of advocating for ourselves, and stepping up to do a kidney friendly lifestyle. Including diet, exercise, stress reduction, and educating ourselves, we can help delay the progression of our condition. If we see the numbers going down for our kidney function, we can start taking care of it now, rather than wait for the doctor to tell us. That's what I did around 2005, when my primary told me, "oh, it looks like your kidney function is sliding, but no need to worry about it." I immediately started myself on a kidney diet, even though everyone said it wasn't necessary. It is my firm belief doing that kept me from progressing quicker, and it wasn't until 2022 I had to go to dialysis.

We can make those decisions to self-advocate, no matter what our medical team might say. We have the final word!
Ginger

My spouse didn't learn that he had kidney issues until a little over a year ago when his EFGR was showing in the 30's.

He has had diabetes and high blood pressure for many years and nothing was ever mentioned to him.

I recently obtain some of his medical records from 2013 and back then his EFGR was 60. Nothing had been shared for the last 11 years. AND he has been seeing doctors regularly.

What I did learn from this experience is that we can't rely on the doctors to take care of us. We are our own advocates. Sadly that means that I have to go behind every single diagnosis the doctors gives and medication that they prescribe.

I've learned a lot and have had a lot of support from these forums. For that I am grateful.

Thank you.

So true. My primary doctor told me, drink more water! Glad I didn’t listen to him.

@kathymiami having your lab results bounce around sure can be frustrating. Especially when we can’t identify reasons for the improvements or worse ones. My eGFR has bounced too, between 14 - 42 since 2016 when I started really paying attention to it. It is currently 36. I don’t track my creatinine as well as you do (since it figures in to the eGFR). I have protein in the urine, but it has been negligible for awhile now. I have anemia related to my kidney disease. In the past I’ve had to take iron supplements and even iron IV infusions. My iron is stable right now. I also recall experiences of being tired and light headed. The worst was associated with an episode of severe anemia. I think that was before I even knew I had kidney disease and was another unrelated condition. Still my nephrologist asks me if I am experiencing those symptoms (tiredness and lightheaded) when I have office visit follow ups. Could you mention those symptoms to your nephrologist at your next follow up?

I've been keeping a list of questions to ask my Neph when I see him in a few weeks to go over genetics tests. My iron is high and from my reading of results it seems I have 2 genes (one from Mom & one from Dad) for Hemochromatosis. I'm also keeping notes for my next meeting with the Dietician. Since my PCP has been prescribing a statin for some years but my triglycerides still high, I made an appointment for the first time with a Cardiologist who ordered a number of tests. My new PCP referred me to the Headache Clinic at the local hospital. Keeping questions for all of them. I was perfectly healthy last Fall. LOL.