New Confused: Hello, first post and I have... - Kidney Disease

Kidney Disease

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New Confused

Wheelz2120 profile image

Hello, first post and I have concern and frustration. I just found out by accident that my GFR is at 53, 57 last week. My wife was looking back at my labs and I have been low to mid 50's since June of last year and this was never brought up as an issue. Now I am waiting on a call about latest labs (the 53) but I am at a loss why my doc would not bring this up or notice. Background information, I am 42, male 180lbs 5'11". I have been on many meds for the last few years because I suffer from chronic migraine. So is this something to be concerned with? Do I have CKD? Should I see a different doctor/specialist? I also have slightly elevated blood pressure that has never been addressed 130/80 What is next?

20 Replies

My doctor sent me to renal doc when my eGFR went from 60 to 30 in a year. Years of uncontrolled blood pressure among other things caused my CKD. You caught it before it got really bad. My eGFR is now around 10 and I am on dialysis. You can see a renal doctor and get educated. Take care. You should be OK that you caught it early.

orangecity41 profile image
orangecity41NKF Ambassador

Welcome to the forum where you will find shared information and get support for CKD. I too had a similar situation where Primary Doctor ignored the eGFR results. I changed Doctor and was then diagnosed at CKD 3b and put on a CKD diet. What were your levels of sodium, potassium and phosphorus. Did same lab take the blood tests ? Maybe consider a second opinion and take copies of your eGFR tests for last few years.

Sodium 139, Potassium 4, The other does not show in my labs

orangecity41 profile image
orangecity41NKF Ambassador in reply to Wheelz2120

Be sure to take that info for your second opinion.

Get a referral from your primary care dr. to see a nephrologist, you need to lower BP , lower or cut out salt, drink lots of water, and get labwork done ASAP. This will tell you exactly what your kidneys are doing, or not doing........every single kidney patient has different lab values, and medications can keep the "high ones" down, and bring the "low ones" up! I am stage 3 a/b, and try to follow a stage 5 diet, to keep my one good kidney "happy"! Some MD's don't know, or maybe care, about egfr, you have to be your own "physicians advocate", some wont even give you the referral; in such case, get a new primary dr., he/she obviously doesn't have your best interest in mind! It's your health,k and you only get one shot to make it right!

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to jj76541

If you are trying to follow a stage 5 diet and you are a stage 3, this could be further damaging. Stage 5 persons need a higher protein intake than stage 3.

People often ask

What is a good kidney diet?

Answer:

The one prescribed or created just for you.

Blessings

orangecity41 profile image
orangecity41NKF Ambassador in reply to KidneyCoach

I agree that the diet must be individual related. Not everyone with CKD has to be restricted on potassium and or phosphorus. Other conditions might be CKD related also and can be a factor in the diet.

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to orangecity41

I understand differences regarding potassium or phosphorus, I'm referring to protein. CKD 2-4 diets limit protein intake or at least protein from meat. Once you are CKD 5 --kidney FAILURE -- protein is INCREASED. If you are CKD 3 trying to preserve kidney function but using CKD 5 diet you're defeating the purpose.

Hope this makes sense.

Blessings

KidneyCoach profile image
KidneyCoachNKF Ambassador in reply to orangecity41

You misunderstand me. CKD diets Restrict protein to preserve function. Once in stage 5 More Protein is required to maintain proper nutritional levels. If as you state you are stage 3 trying to preserve kidney function by lowering protein but you are following stage 5 diet -- which requires higher protein levels then you may be doing more harm than good.

Hope that makes sense. Sorry I lost my other response. Maybe I misunderstood what you meant about following stage 5 diet (increasing protein). If so, I apologize.

Blessings

Do you exercise much? If you exercise much, it can give you a false CKD diagnosis. Creatinine based eGFR is a very flawed test. Get your cystatin-c tested and calculate your eGFR off that. Based on my Creatinine I am considered stage 3, but on my last Cystatin-c eGFR was 115 and it usually stays around 90.

Inhuman2019 profile image
Inhuman2019 in reply to

Matt doing my 24hr urine test and cystatin c before dec 6th when i see my nephrologist. My stupicd creatinine level based e GFR is bouncing between 73 and 56 depends on how much time between gym and lab. The Nephrologist feels it will show slightly damaged kidneys. She agrees 100% about getting the cystatin c after seeing how big i was in person.

in reply to Inhuman2019

Creatinine is a joke. I am horrified they diagnose CKD based on that number alone when it is so unreliable. It scares me further that decisions to put people on dialysis are often based on this number.

Wheelz2120 profile image
Wheelz2120 in reply to

I am very active but do not specifically exercise. I have a small farm plus work full time and restore cars. The doctor's nurse finally called me back yesterday and said there was nothing to be concerned with. When I asked her about my GFR number she had no answer and said she would asked the doctor. It is just frustrating because based off what I read that number means I need to be concerned but they say I don't and don't even want to run more test. I just want to know if I have damage and what i should do.

in reply to Wheelz2120

Creatinine is very unreliable for measuring kidney function. Obviously you can't stop being active since that is what you do for a living, so if you are really concerned, get better tests. Cystatin-c is a good one since it is less affected by activity. The 24 hour urine collection test is the gold standard.

Wheelz2120 profile image
Wheelz2120 in reply to

Thanks, the number that really bothered me was the GFR at 53

in reply to Wheelz2120

yup, my family doctor ran a kidney panel on me about a year ago which includes creatinine. It came back twice elevated so he sent me to a nephrologist who told me I had stage 3 CKD and that I would have to make a ton of lifestyle changes or my kidneys would fail. (I believe now that he just saw me as a potential new patient $) I left his office and had a panic attack. I went to my family doctor to get something for anxiety and he ran my creatinine again... it came back normal. Doctors are not supposed to tell you that you have CKD until you have had 3 successive elevated creatinine blood tests. I have never had that so the nephrologist should not have told me I have CKD, let alone the fact that I am a weightlifter who strength trains 5-6 days a week, jogs on my lunch break, and rides a bicycle on the weekend. My creatinine eGFR has bounced back and forth, as low as 40 and as high as 80. My Cystatin-c however has been very stable around 90 eGFR. Cystatin-c is not perfect either but it is 100 times better than creatinine.

Wheelz2120 profile image
Wheelz2120 in reply to

Ok, my Creatinine has been elevated anywhere from 1.3-1.5 since June of 2019 and my GFR has been as low as 52 but never higher than 58 again dating back to June of last year. I have dealt with migraines for the last 10 years so lots of blood test that I am able to look at.

Raclette profile image
Raclette in reply to Wheelz2120

Exactly - I am frustrated too because I pointed out my graphs to Dr a year ago and was dismissed because it is still just within their boundary graph - so stupid to have to wait till it gets worse instead of doing something now - I can see my results on Patient Access App

Hi Wheelz. There are lots of good comments here. You can find tables showing GFR ranges for people based on age, sex, and your race at the link below. As others have said, the diagnosis of kidney disease is based on more than simply GFR. Keep an eye on yourself - examine your medical trajectory, control your blood pressure as it damages small blood vessels inside kidneys, review your meds for kidney impact, realize physical exertion can skew the numbers, and more. My husband's numbers stayed stable for decades, but he ignored his diabetes so he's on dialysis today. One thing I'd like to add is that your blood pressure is such that you may be able to control your pressure by simply removing salt from your diet. Before doing so, examine your electrolyte figures too (sodium, chloride, phosphorus, etc.). If these are on the high end - fine. But if they go too low, you can mess up your heart rhythms, etc. I'd recommend talking to your doctor before setting off down that path. I'm glad you're proactive - that's the way to keep on top of everything.

kidney-international.org/ar...

orangecity41 profile image
orangecity41NKF Ambassador in reply to Darlenia

I agree Darlenia that CKD diagnosis of CKD is base on other factors than just the eGFR.

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