No diabetes or hypertension but GFR/Creatinine cratering

[JohnfromWA]

What could be wrong with my kidneys if I'm not a diabetic and my high blood pressure has been completely controlled for years (129/78). A1c was normal, blood sugar normal (89), no protein in urine, BUN low, BUN/Creatinine normal, normal calcium, and potassium. My GFR was 54 and my Creatinine was 1.39 on February 17th and on March 8th my GFR had dropped to 47 and my Creatinine went up to 1.50. After I received my results on February 17th I began drinking 64-80 oz of water a day, lowered my daily protein intake to less than 50g a day and completely cut out exercise and my labs still cratered. I had a renal ultrasound three days ago and my kidneys look normal on ultrasound. I'm somewhat angry because I've been diagnosed as CKD Stage 3a and my primary care doctor very nonchalantly said "oh you're Stage 3 kidney disease. You've been having some high creatinine and low GFR a couple times in the past couple years." For goodness sake! I went from not knowing anything about CKD to Stage 3a. Cripes. What happened to Stage I and 2? The doctor has referred me to a nephrologist but it'll be a few months before I get in to see him. Do I need a kidney biopsy? Are my kidneys diseased? Any answers?

[Hidden]

Welcome to the club. There are many of us here in the community that didn't find out we had CKD until Stage 3 or even later. The fault has been with the medical community in not being open and honest with their patients. Slowly, oh so slowly, that is beginning to change.Before I go on, let me explain something. You have hypertension and it is under control with medication. That can still be a cause of CKD. I have T2D and HBP. I haven't been on meds for T2D in several years. The damage was already done before that. I'm also on three HBP meds and my blood pressure readings are very good. An ultrasound determined that diabetes was/is the cause of my CKD.

Talk to your doctors and institute an exercise regimen that will work for you. I've consulted my cardiologist, PCP, and nephrologist and my program allow me to exercise both at home and on the road by walking, biking, and using a home stationary machine when the weather warrants.

Remember, for the two or three days prior to labs being drawn don't do anything in excess. I like going for a long walk or bike ride, but I save it for after my labs and not in the brief time before I go to have the blood/urine labs.

To make the diagnosis the doctor would/should more likely do the labs over a couple of months and get consistent readings for your GFR, serum creatinine (sCR), Albumin to Creatinine Ratio (ACR), and blood urea nitrogen (BUN).

Do you have a cardiologist? Do you have a home blood pressure monitor that you use? I have an automatic one that my cardiologist has me running my blood pressure twice a day and recording it and he checks my logs every visit.

There are other causes of CKD beyond the two I've mentioned. Have all of your doctors, especially the PCP and nephrologist taken a full medical history of you as well as asking about the health of your family (parents, grandparents, etc.)

Don't worry about a kidney biopsy until you see a nephrologist and even then after they take all of your information and rule out other tests first.

Have you gone to davita.com and registered for the virtual, free, 90 minute Kidney Smart class? You'll get a lot of information and resources. The more you learn the better off you'll be in directing the members of your Care Team in the treatment decisions you need.

You can also go to kidneyschool.org and watch the learning modules. You'll get a lot of answers and be able to develop questions for your nephrologist and other doctors.

You need to be following a kidney-friendly meal plan. The DaVita website would also give you a good idea of the foods you need to eat to help to slow the progression. Look back at your hard copies of the labs and look at the numbers for your protein, potassium, phosphorus, sodium, and calcium. A Renal Dietitian will work with you to develop a plan that works for you based on your preferences and needs. Obviously, you know about cutting back on sodium. I use no added salt and minimize the foods with a high sodium content. To flavor the foods you'll need to use herbs and spices. That has worked very well for me.

I know it's hard but stay positive and learn all you can about CKD. KNOWLEDGE IS POWER and if you go to websites for AAKP and AKF (American Association of Kidney Patients and American Kidney Fund) you'll be able to check out their copies of webinars that are worth watching and doing so will give you lots of information. If you register for their newsletters you'll get notices about upcoming webinars that be of interest for you. Shortly after the webinars are held they post them on their archives page and you can view them at your leisure.

Best of luck.

[SkiingSailor]

Welcome from me as well. I also had the same experience in the U.K. with lack of early diagnosis . Fantastic response from Mr Kidney . Not sure there’s much to add.

You’ve found the right place to come to. Another good site for information is kidneyhood.org . Lee Hull had also written books which are superbly researched and helpful. As someone with CKD he too has battled with the same issues as all of us and turned his numbers round.

Keep in touch.

[JohnfromWA in reply to SkiingSailor]

Hah! I had already bought the Kidney Disease Food Guide and my wife has been making recipes from it. Seems the person who wrote it states that nephrologists and kidney dietitians don't focus enough on limiting protein as the waste products from protein are what cause the Creatinine to go up and the GFR to go down. The real problem is getting enough protein daily to keep healthy. Legumes are high in phosphorus and even tofu is fairly high in protein. I used to eat a lot of red meat (I'm talking 10-12 oz of steak) as I was very active, tall (6'4") and weigh 205. Now I'm limiting my protein to 4 oz of chicken breast or pork loin filet (it has no fat) but I'm rapidly losing weight and that can't continue. I've lost 12 lbs in the last month but I worry about consuming protein. I don't know foods to include or exclude because my labs point to me not being a diabetic and a lot of these renal cookbooks just assume that I am. I need to see or hire a renal dietician because it's going to be months before I get in to see a nephrologist who will refer me to the dietician. My wife and I are just spinning.

[SkiingSailor in reply to JohnfromWA]

I think we’re all spinning - so long as we regain control. I lost weight too at first, but that’s stopped now. I think your body just acclimatises to the me you !

[RoxanneKidney in reply to JohnfromWA]

I try the tofu thing. I am afraid of losing too much wieght too. That can't be good either, especially rapid wieght loss. That has to contain muscle waste.

[MsJasmine]

Hi - as others said you can start with dietary changes and go towards more plant based. It helps most people. A nephrologist - if he/she is good - should be able to help you. Also a renal dietician. There is a list on the national kidney foundation page by state

[RoxanneKidney]

I have the SAME issue. No one seemed concered about this for years. I had no idea. I worked out with intensity. smh now stage 3 too.

[RoxanneKidney]

The food you eat could be hard on your kidneys. It is not one or two meals but the chip, chip of long-term poor eating habits. Or drinking and smoking. And in my research...and in my own case, your blood pressure is too high. Kidneys like is LOW 110/70 .

[Eeebs]

Hello John, I'm new to this community and wonder how you are doing on your journey? I'm just starting mine and it is very similar to yours with the exception of no hypertension. I'm thin, no diabetes, no hypertension but I do have autoimmune disease. My EGFR has gone as low as 45 in the past year and no one in my old practice nor my rheumatologist was concerned although I asked repeatedly. Drink more water was the answer of which I already did to begin with. My husband and I are active. We walk, play pickleball, etc. I have Hashimotos, Fibromyalgia, and have a positive ANA and just recent this year positive Anti Centromere B (marker for scleroderma) which is why I was referred to the first rheumy. Just wait and see is what he wants to do. My new practice was not happy that no one made the connection of autoimmune disease and an organ beginning to fail. Immediately sending me to nephrologist and new rheumy for 2nd opinion. I've already begun my own journey of eating better than we already do. I already grow my own veggies in the summer, cook from scratch, light on the salt, eat very little beef...small meat portions...french fries and potato chips are my downfall...In my head trying to figure out why my kidneys are unhappy when I've been doing so many things right. The human body is a mystery. In any case, hope you are well and have learned some things you can share.

[Peonyrose64 in reply to Eeebs]

Hi there I have just been diagnosed with Chronic Kidney disease I have not got High Blood Pressure or Diabetes and aged 59. I am shocked to find this out as I feel fine! I am told its very mild at egfr 56 from 59 three years ago with one kidney since aged 2. How long have you had yours now and how are you feeling? I am pleased to say I am trying to be positive and enjoy life regardless.