CKD stage 3A: Hello... waiting for PCP to... - Kidney Disease

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CKD stage 3A

Alexie90 profile image
28 Replies

Hello... waiting for PCP to confirm but based on recent labs over the last few months, it looks like I have CKD stage 3A now. although my doctors dont seem concerned. in fact at my local clinic (which is part of a large medical group/hospital) they dont even report your eGFR score if its 60 or higher. which I find very odd. you would think especially with diabetic patients they would want to know even if they're stage 2 CKD or how close to stage 3 the patient is. so far there are major changes. they just increased my metformin ER to 1000mg twice a day (was taking 1000mg in AM and 500mg in PM). A1C increase too a little. both creatinine and BUN are running slightly elevated too. nothing else. no referrals to a nephrologist or anything. just a recheck in 3 months. I have diabetes type 2 (although I'm not overweight) and only one working kidney (the other is atrophic for unknown reasons)

11/11/22 -- eGFR 50

01/03/23 -- eGFR 55

03/29/23 -- eGFR 55

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Alexie90
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28 Replies
orangecity41 profile image
orangecity41NKF Ambassador

Glad you are tracking your eGFR and have had improvement. Are you on any prescribed CKD diet? I realize that some Doctors do not prescribe diet when at level 3, but could be other bloodwork results and other factors to consider.

WinJ3 profile image
WinJ3

I am also glad to see you keeping track of your eGFR. Some doctors only get concerned until you are near end stage. You need to be proactive and tell them to refer you to a nephrologist. It would also be helpful to see a renal dietitian. .

Monkey_gir34 profile image
Monkey_gir34

Hi, this is exactly the problem I'm having with my GP, I was only told I had mild kidney function reduction, nothing to worry about, so basically stage 2...then it went down to 3a... at efgr 55 and i was finally told what it was and so I changed my diet and its gone to 61. However, after protracted conversations and heated discussions with the GP, they finally agreed to refer to a renal clinic for specialist dietary advice...but renal clinic refused a referral. The best I can get is a leaflet on CKD! It's just crazy that they wait until its a bigger problem...

OldTownhammock profile image
OldTownhammock in reply to Monkey_gir34

I have the same experience. However, I am putting myself on a pretty strict diet above and beyond whaT my GP. Gave me which was a list of high potassium foods to avoid.

Monkey_gir34 profile image
Monkey_gir34 in reply to OldTownhammock

That's actually more than I got!

OldTownhammock profile image
OldTownhammock in reply to Monkey_gir34

Also check the national kidney foundation

Ladyprudence profile image
Ladyprudence in reply to Monkey_gir34

I have the same experience with my GP, and have heard about it often enough to realize it's pretty common for the doctor to be very laid back through stages 3a and b. I found a nephrologist on my own, called and asked if they insist on a referral, and the lady said yes, they MUST have referral. Then she got someone else to the phone who said no they don't need one. But she did engage me in a conversation, I guess to prove I knew what I was talking about. I don't know what exactly to expect, but am hoping I'll at least get a nutritionist or dietician out of the visit. I have to bring results of lab work.

Monkey_gir34 profile image
Monkey_gir34 in reply to Ladyprudence

Fingers crossed for you...keep us posted

Ladyprudence profile image
Ladyprudence in reply to Monkey_gir34

I will keep you posted; my appointment is in a couple of weeks, and it may come to very little, but I just have to try. .

Blackknight1989 profile image
Blackknight1989 in reply to Monkey_gir34

Thecreason you did not receive a referral and that the renal clinic refused that referral is there are so many of us who are stage 4/5 CKD. At most, in my opinion, there was a need to alert you to your potential kidney disfunction and an explanation of what that meant to your overall health by your doctor. The referral to the renal clinic with a stage 1/2 issue when they are backlogged with stage 4/5 patients waiting for an appointment makes sense. At your stage, diet modification and exercise will most likely improve your very mild kidney issues. Additionally you mention it “recently went down to 3a,” my opinion, lab values fluctuate and most likely numbers that indicated you were stage “whatever” were just either a normal change in your body chemistry or a lab calculation error. If you like your GP, I would caution against screaming matches with them regards a stage 2 kidney issue. You don’t mention your age but it would be my educated guess that the start of the kidney issue you mention will never be a problem you’ll have to deal with in life. If you do what you have already done, change your diet, don’t drink alcohol, careful with both otc and prescription medications and exercise you’ll never reach the final couple of stages and need to actually treat a serious kidney problem. You have done what you can do keep with the better diet, exercise and watch the meds both otc and script and I bet you’ll be fine. My best to you and your health!

Monkey_gir34 profile image
Monkey_gir34 in reply to Blackknight1989

Thank you so much, I appreciate that resources must be kept available for those with more advanced kidney issues and I genuinely don't have a problem with that...all I was seeking...and I was very clear about this...was someone to go through my lab results and confirm that my diet modifications were appropriate...because diet, appears to be a very unique to the individual, thing. My GP galloped through them and could only offer a...keep a healthy diet and I was left on Google trying to work out if i needed to reduce protein or what! I hope to continue towards improving my ckd (maybe with an odd tipple 😉) and, as you say, never reach end stages. Blessings to you ❤️

Blackknight1989 profile image
Blackknight1989 in reply to Monkey_gir34

I certainly did not mean to infer that somehow you would be taking a spot away from someone “sicker.” I am extremely long-winded and have been known to post replies that might take up the entire page of these forums…lol. I am making a valiant attempt to cut down on my bloviating. Sometime when I limit my verbose spewing of words on these replies I sound short or curt. That was certainly not my intent nor was it my intent to “judge” your illness as not worthy enough for the treatment you sought. Instead I was attempting to give some perspective that, in my opinion, you won’t ever have to deal with the issues you describe because nearly 90% of renal patients never advance to the end-stages. In other words I was trying to be encouraging and based on your reply I obviously did not come across that way. As such I apologize. Finally, maybe your GP isn’t the best medical professional to discuss diet. Will your GP refer you to any kind of nutritionist or can you make an independent appointment with one? They would be the go to for nutrition advice. You mention Google to find help. I’ll end with a couple of links that may help. Chances are you have already run across each but on the off chance you haven’t, maybe they will be of some help. My best to to you in your journey to achieve optimum health! Links follow:

kidney.org/nutrition

kidneyfund.org/living-kidne...

diabetes.org/healthy-living...

seabreezegirl profile image
seabreezegirl

Yes close to same thing here . No one said anything to me for years !! About my GFR . I am pre- diabetic.

When I moved and got a new doctor he said did you know you have CKD?

I said what ?? No I did not .

I was at 55 GFR

Now the govt . Has changed the standrad so that it looks like your GFR is really better than it is on lab tests.

60 would be still 3 A .

I freaked out and started crying which made the doctor uneasy . ( Emotional Female, you know. )

When I asked what should I change in my diet? He said oh do not worry about that 3 A is early in the disease and sent me in my way .

So I contacted a Dietitian and went and got some food ideas .Whatt to eat for stage 3 A and what not to eat .

Also read alot on the internet. ,( you must be careful alot of info out there on internet... some is very good some is kooky make sure you read from good science based websites ,not ones who try to sell you "pie in the sky" expensive products )

DeVita website is a good place to start .

They will tell you good foods to eat ... like cabbage, Red bell peppers , cherries and berries ,blue berries raspberries , strawberries peaches ( but not apricots) look on look at their list of good foods .

*** I go one step farther and only buy Organic in these foods as I feel strongly that our kidneys do not need poisons like Round - up . Because for instance Bell peppers and strawberries are ones who are on the Dirty 12 list meaning they pick up lots of chemicals like Round-up.

I also drink pure water that I buy from a water store.

By eating these foods I have brought my GFR back to 78 from 55 .

As an RN I have taken care of end stage kidney pts .

This is why I became so upset when doctor gave me this news .

Yes it is a chronic and progressive disease .

But you can slow it way down ,....or speed it up by the foods you eat.

I hope to die of somthing else like old age in general.

Ladyprudence profile image
Ladyprudence in reply to seabreezegirl

I don't know, maybe we are jumping the gun in getting started on a diet in Stage 3 since the doctors are ho-hum. But the way I see it, this gives me a good head start on eating in a more healthy way, (providing of course we get some diet guidance) It's never too early to eat healthy; just don't go crazy with it.

seabreezegirl profile image
seabreezegirl in reply to Ladyprudence

What ?? CKD is a progressive disease .

ONLY way to slow it down is proper diet .

You do not want to wait to stage 4 to begin good diet .

Ladyprudence profile image
Ladyprudence in reply to seabreezegirl

Goodness, I thought that's what I was saying; maybe I didn't make myself clear.

seabreezegirl profile image
seabreezegirl in reply to Ladyprudence

Did you read my answer above .

I gave lots of diet guidance.

I am an RN

Ladyprudence profile image
Ladyprudence in reply to seabreezegirl

I'm so sorry, seabreezegirl, but if you're responding to my posts, I'm not getting what you're saying exactly. So I don't know what I'm supposed to say to you.

seabreezegirl profile image
seabreezegirl in reply to Ladyprudence

Yes close to same thing here . No one said anything to me for years !! About my GFR . I am pre- diabetic.

When I moved and got a new doctor he said did you know you have CKD?

I said what ?? No I did not .

I was at 55 GFR

Now the govt . Has changed the standrad so that it looks like your GFR is really better than it is on lab tests.

60 would be still 3 A .

I freaked out and started crying which made the doctor uneasy . ( Emotional Female, you know. )

When I asked what should I change in my diet? He said oh do not worry about that 3 A is early in the disease and sent me in my way .

So I contacted a Dietitian and went and got some food ideas .Whatt to eat for stage 3 A and what not to eat .

Also read alot on the internet. ,( you must be careful alot of info out there on internet... some is very good some is kooky make sure you read from good science based websites ,not ones who try to sell you "pie in the sky" expensive products )

DeVita website is a good place to start .

They will tell you good foods to eat ... like cabbage, Red bell peppers , cherries and berries ,blue berries raspberries , strawberries peaches ( but not apricots) look on look at their list of good foods .

*** I go one step farther and only buy Organic in these foods as I feel strongly that our kidneys do not need poisons like Round - up . Because for instance Bell peppers and strawberries are ones who are on the Dirty 12 list meaning they pick up lots of chemicals like Round-up.

I also drink pure water that I buy from a water store.

By eating these foods I have brought my GFR back to 78 from 55 .

As an RN I have taken care of end stage kidney pts .

This is why I became so upset when doctor gave me this news .

Yes it is a chronic and progressive disease .

But you can slow it way down ,....or speed it up by the foods you eat.

I hope to die of somthing else like old age in general.

renegade70 profile image
renegade70 in reply to seabreezegirl

as an rn i am not sure why you do not have access to your labs via electronic records . also as an rn wouldn't you know how to read those labs yourself , know your status and ask questions? normal ranges are usually listed right next to your own values. do you live in an area where electronic labs are not available? i am also not sure what you mean by govt. egfr changes making your kidney status look better then it actually is? the only recent change i am aware of is the change related to racial bias. that change would simply mean putting everyone in the same category when it comes to egfr testing. i would really be interested in what other changes in egfr have been made?

i do agree with the overall belief on this site that doctors in general including nephrologists know very little about diet and nutrition. i remember on my first visit to a nephrologist when i asked what i should be eating in stage 3, she responded that i should not be eating a burrito for breakfast every morning. i have never had a burrito for breakfast in my life. and that was it. but i have learned quite a bit since then.it looks like you are doing all you can to improve and keep yourself stable but please keep in mind that not everyone can afford organic foods or has a special water store nearby. many people are doing the best that they can do. there are people that no matter what they do eventually fall into stage 5 and kidney failure.

userotc profile image
userotc

As you can see, its not really "very odd" that a medical doctor doesnt even bother to inform you when your kidneys start to decline (add my mum to the list!). Thats because there is nothing they can do at that stage which directly affects the kidneys - although (annoyingly) there IS something you/we can do by natural means. My mum is testament to that with eGFR almost double what it was post-nephrectomy ~6y ago.

Who should manage that is the question. I discount doctors that didnt help in the first place and are un-trained and un-qualified in nutrition. So personally I'd recommend a qualified Nutritional Therapist that specialises in renal if you require external, qualified support.

lowraind profile image
lowraind

My belief, since I was diagnosed in 2017, is that if a diet is prescribed at level 3, getting to level 3 or beyond can be avoided if we do now what they prescribe then. Do your own research, follow that and the advice given here, and you should see an improvement.

National education, support and advocacy organizations:

• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.

• Renal Support Network provides many support and advocacy services including a phone support line.

• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

• National Kidney Foundation provides a portal for patients too.

Also, Mayo Clinic, Cleveland Clinic and Johns Hopkins University websites provide helpful information.

Good Luck!

S_dillow profile image
S_dillow

all great sources i use them myself but if i need help i know i can learn much here as well

KidneyCoach profile image
KidneyCoachNKF Ambassador

Metformin is contraindicated for those with noted lowered egfr status. Find a nephrologist, make an appointment and ask questions. Blessings

Darlenia profile image
Darlenia

An eGFR below 60 isn't unusual for a person with one kidney - the 50s are okay. GFR tables are based on people with both kidneys. Sometimes a remaining kidney will take over the function of the other, but not always. You also indicated you're also a T2D. If your A1Cs and creatinine go up sufficiently, it's very likely your eGFR will go down - an inverse relationship. My hubby, also a T2D, isn't overweight but the problem remains. He keeps an eagle eye on his carbs/sugars and takes his meds religiously. His body is a super-producer of glucose, we can both eat the same thing and his spikes twice as high. It's truly a metabolic disease. Unfortunately, it's the glucose that can take out the filtration vessels within your kidney so watch it like a hawk. It would be such a gift to have a cure for diabetes. As for diet, make sure everything you do is driven by your labs - some diets eliminate electrolytes necessary for other organs to function properly, etc. It's best to seek the guidance of a professional who can advise and follow you regularly.

seabreezegirl profile image
seabreezegirl

This is fairly new the not reporting if over 60.. And the labs have readjusted so the GFR looks better than it really is .

My doctor was upset about this a few months ago .

shortmat profile image
shortmat

To put it in proportion : if your eGFR is 50 or more you are in no worse a position than somebody who has donated a kidney to another person. Just take care of your lifestyle choices .

bikerchrish profile image
bikerchrish

I had the same issue and I am at 50egfr but they are not sure if my muscle means it could be higher and a bad reading. After a few times below 60 they said stage 3 and told me. I went to a new doctor and asked her for a kidney specialist. She sent me. You do need to watch your diet now and be an advocate for yourself because many people had the same issue you are having and no one said anything until it was more than half kidney function lost. God bless and I am really happy you know now and are doing the right thing.

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