Hi, for the past month I have seriously been changing my diet after doing a lot of googling and my eGFR was at 27.
Looking into everything I put in my mouth so unless it was hidden ..no salt , no red meat, potato’s and dairy ,some of these products did sneak in but overall hardly any.
I increased my fruit and veg as I was folate deficient.
This week I had another blood test and my eGFR is 32! So thats 3b CKD now , however my creatine levels are still high but has gone a little lower does anyone no how to get it within normal range.
Sandra P
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MrsP70
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Has your Doctor run tests for sodium, potassium, phosphorus, and protein to make sure if these are high or low. Do you have a Doctor supplied diet? I have been on a CKD diet for 7 years and it has helped.
In the Uk you don’t get to see anyone until you are stage 4/the only think I was ever told was cut down on salt, however I am going to see a Nephroligist in January.
I was stage 3 in 2009. And I am now 75 the only education about CKD is what I have gleaned from the internet. They do yearly checks and you don’t get to see your results
I filled a form in and asked to see them about a year ago then I had to understand what they meant , now there is a problem with my results I have had two tests
We are all entitled to see our results in the UK. If you don't have online access via your surgery or the NHS app, you can request a printout from reception at your surgery. Your results will come with their ranges, so you can understand what is going on and chart your progress.
Hydration can play a great part when having your egfr tested. Remember, too, that this is an estimated figure that can change from day to day.
Protein intake increases creatinine, as does exercise; even a walk before your blood test can cause it to be raised. Googling kidney disease can uncover facts as well as fairy stories, just make sure that anything you follow is well-researched.
If you can sign up to the NHS app it can be very helpful. Most surgeries also have their own app for ordering prescriptions and online medical services. The NHS app allows you to deal with these things too, often in association with Patients Know Best. (Unless you are in Scotland, it appears). Once you have these set up it makes life much easier and you can get health and test information on the NHS app too.
Unfortunately if you have high creatine levels that’s usually a result of damage that is irreversible and as such impossible to return to normal by either diet or medication and once increased the physical damage responsible for the increase is irreversible. Further it is normal especially for those of use with advanced CKD high (or low if you prefer) stage 3, and stage 4 for eGFR to fluctuate 25-35% (for example I range from 16 to 22 +/- 6 points or about 27 % so not unusual for you to have an eGFR of 27 on 1 test and 32 on another +5 or about a 20% difference…remember it’s a test for EGFR (E is important as it is estimated and most studies done in the last 5 years show that those of us with CKD 3/4 can expect a 20-30% variance in lab readings due to several factors both related to normal bodily fluctuations, testing related deficiencies etc…With just the two blood tests you mentioned, I don’t know which one is correct but I’d act as if the initial test is correct until you have more tests to determine if mid-20’s is the correct eGFR or if it’s low 30s as the last test showed…unfortunately CKD isn’t a disease that improves, it’s degenerative and will worsen with time and aging…Currently there exist no treatments that improve the underlying damage and lead to improvements in the underlying numbers associated with your current stage of the disease…instead, I’d act as if eGFR was high 20s/low 30s and make some minor modifications to diet and lifestyle that will be beneficial IF the test confirm the diagnosis yet won’t cause any harms to your physical or mental health because the minor lifestyle changes are not drastic…I was diagnosed at age 29… had AKI about 4 weeks post CKD stage 4 diagnosis and had complete organ failure or all organs to include several pages of a flatlined CVD printout, and spent almost 7 months in hospital plus an extra 5 months recovering at home…and at age 30 went back to work, got married, had two wonderful children and lived my life, I’m 58 now, eGFR has declined with age from about 20 to 17 on my last test but my wife and I are enjoying retirement and hoping to enjoy it more by moving to Florida if we can get out 27 and 22 year old “children” totally self-sufficient (may just have to visit FLA as I’m not yet 60 but may need to help my kids until I’m 85…lol!) and I hope my eGFR hold long enough to avoid dialysis as I’m determined not to go down that path (at nearly 60 I have no desire to do so, I love my life, and family but I believe we will all eventually be together again (and want to enjoy life healthy, not live debilitated merely surviving one day to the next unable to participate in life and its joys)
Don’t be afraid of a CKD diagnoses, and remember once in a stage whether stage 2,3,4 it is very unlikely for there to be any true improvement of the disease as you mention from the recent blood test moving you to “3b CKD now.” Instead accept the fact that it is a chronic life long disease that most likely will result in increasing numbers as your normal aging process takes its usual toll on the body and its organs. I’ve lived now for almost 30 years with CKD stage 4 eGFR 16-20 and lived (as far as I know) a normal life, sure eGFR down about 3 points from initial diagnosis 30 years ago but with proper care and minor lifestyle modification (for me that was consistent exercise and a slight modification in diet) not really any sacrifice at all) it’s only down 3 point in 30 years…so be aware of your disease if properly diagnosed and stay away from ingesting anything that would do harm to organs, be mindful, but don’t be overly concerned as with just a few minor lifestyle changes that really result in no sacrifice, you can manage even CKD stage 4 for many years….I’ve done it for almost 30 years and hope to for at least 15 hopefully 20 more years more….
Finally, it’s great you’ve seen positive changes with diet, but when diagnosed in 1996 there wasn’t the knowledge of “Food is Medicine” as there is now and despite several different specialists offering all kinds of different and often contradictory and medically unsound advice, I never had the benefit of a CKD diet and don’t see the benefit of changing now after nearly 30 years of managing the disease, I’ve never eaten much red meat but do eat prime rib for Christmas and 4th of July. I mostly eat carbs, fruits and a couple of veggies and maybe that will cut a couple of years off the end of my life that I could have lived if on the proper diet…then again, I’d not have my prime rib to look forward to at Christmas and July 4th…life (despite even a devastating diagnosis of CKD stage 4 at 29 years old as I received (along with my doctors reassurance that I’d not live long enough to even get out of the hospital, much less see 30 years old or CERTAINLY NOT nearly a completely healthy life (other than the underlying CKD 4) to age 59 and hopefully at least another 15/20 healthy years). Life is long (relatively) and if you take care of the vessel given to you (even if you almost completely destroy it first as I did) it can be happy and full of tremendous rewards, some pain but mostly lots of happiness and wonders such as the love of my wife and my love for her, the miracle of my kids birth and life and the satisfaction of watching them both become awesome people who got the “adulting thing” mastered…now I’m just waiting on grandkids! Live your best life despite a CKD scare or a CKD diagnosis of potentially life threatening/shorting disease as the extra 30 years I’ve been gifted so far have been awesome and I look forward to at least 15/20 more! My best to all!
I can’t tell you how inspirational your comment is to me. I am 58 too and have my first two grandkids on the way. My creatinine has risen from 2.21 to 2.54 in the past 6 months, and my eGFR dropped from 34 to 29. I have been the kind of guy that ate/drank what I wanted and was in good shape, but I need to figure out how to approach this disease so I can enjoy my grandkids for many years to come. Altering my diet is a monumental task for me. What is your secret to keeping your kidney function so stable for all of these years?
Whitetail66 (deer hunter? Just curious due to the screen name…lol!
My creatinine is mid-high 2’s eGFR about 16-22 over 4 tests in the last full year (not calendar) but tested quarterly so last 4 quarters 14, 20, 18, 23… just like all labs this measurement can vary 10-30% based on too many variables to list, it’s all about the average not the number (which is why folks shouldn’t obsess over what the number is at-diagnosis or any single lab-test it’s about the average of several tests over a period of time…just because one lab test is 14 like mine in the last quarter of ‘23 didn’t mean my nephrologist would immediately ship me off to dialysis…So first is self-education. Use trusted sites with prefixes like .gov, .mayo etc…find a doctor who will at least work with you in a collaborative effort as all the trusted sites like .gov, .mayo etc indicate to patients and physicians in their guidelines that this is a collaborative effort…unfortunately (if you are like me I moved from a metro-area back to a rural area to take care of my parents as mom and dad needed help in 2018…I haven’t seen a specialist since because none were willing to allow me input…(I asked for an SGLT2 as that is how the frontline treatment and the recommended first-line treatment by the American Society of Nephrologist…well we have 3 groups of nephrologist here (within 50 miles) I’ve seen at least 1 from each group to try to get an SGLT2 inhibitor (Farxia/Jardiance) and they will not prescribe because they freaking won’t read a their Journal of American Nephrologists which has at least 4 of the last 12 months issues RECOMMENDING THESE as first-line treatments for All their patients unless contraindicated in specific patients…so I took an issue in with me at the last 2 appointments one doc left the room and just never came back (I sat there like an idiot for an hour, finally asked the nurse she told me “he’s not coming back as he doesn’t treat patients who think the know more then him after all he went to med-school” so I’ve been run off by 5 nephrologists groups…wasn’t a big deal until the T2D drugs burst onto the scene now I need one to prescribe! I guess I’ll have to drive back to the capital (4 hours) and see my old nephrologist…
IF NO INTEREST IN THE ABOVE HERE IS THE ANSWER TO YOUR QUESTION:
I did alter my diet some but not much…I never ate steak daily or even weekly, usually just for Christmas and July 4th…I still eat steak on those two holidays…I don’t like many vegetables and therefore eat very few vegetables…I eat healthily (I certainly don’t follow the King Henry VIII diet) but I still eat animal protein, not a porterhouse or a leg of lamb, but pretty much a normal diet…no fast foods, very little sweets (never was big on deserts I’d rather eat more chicken (90% of my animal protein is chicken) but I since a renal diet was never any kind of treatment option in 1996 (diagnosed in January, DOCTOR caused AKI in February resulting in cessation of heart activities for at least 2-3 minutes and 7 months in hospital/5 months home recovery, switching doctors and having the two top doctors in the state “fix his screw-up and instead of dying in the ICU they managed to creatively work their magic to get me out of the ICU after 7 months, 5 months additional recovery at home, they encouraged me since we visited for those 7 months daily to be “overly-proactive” with new docs (as they knew I’d be out of their care after or if I survived the hospital) because in their words most of their peers knew nothing about CKD and stage 4 CKD with a sub-20 eGFR…so they recommended I learned all they knew…I spent about a year in their care and they educated me everyday about how to self-advocate then how to fire a doctor etc…I’ve been turned away by doctors, one group of nephrologists called the other two nephrologists groups and tried to coerce the other 2 groups in my town to refuse to schedule an appointment and refuse to see me…all because I’m trying yo find a doc willing to write a new RX for the new drug!
OKAY ANSWER HERE: my secret? I have none, I avoid anything entering my body that has ANY INDICATION of being nephro-toxic…it’s hard to find that info sometimes as I’ve had to call RX companies, government agencies or big-pharama manufacturers to access that info because most don’t put that on tge label…for example, I have had several joint replacements and fusions (I even ask the orthopedist for specifics of the implants and if they don’t know or the manufacturer of the replacement knee/ankle/hip or if the manufacturer can’t verify their implant isn’t nephrons-toxic I will refuse that implant….nothing goes in my body if I have any doubts about renal effects… I avoid alcohol,, drugs etc…one cup of coffee, etc…I am just careful and will refuse any recommendations for treatments/implants etc unless I know for sure whether reno-toxic and try to follow “all things in moderation” philosophy…hope that helps
If you have specific questions ask away as I’m an open-book. If anything I went through can help someone else I’ll be completely transparent about my issues, nothing off limits as if anything in my experience can help another then that’s worth any kind of short-term “uncomfortableness”. Yes I just created a new word! If I can help and happy to! My best to you!
Thank you so much for the reply, and taking the time to write such a detailed answer. I love it!! I was a deer hunter, but since red meat is off the table, I don’t see the reason in going anymore. I am an artist that loves doing wildlife, and deer are one of my favorite subjects.
It seems to me that nephrologists aren’t very proactive, for the most part. I would love to find the ‘Dr. House’ of nephrology!😆 My first nephrologist was terrible. Nice guy, but no help whatsoever. All he did was read my numbers and told me to ‘drink a glass of water in the morning to get things lubricated.’ WTH??? So I fired him and found my current nephrologist, which I’m happier with, but still not sure. She is more proactive for sure. I told her that I was super fatigued and my muscles were sore and achy most of the time. In looking at my labs, she didn’t feel that my symptoms were caused by my stage 3b (35 eGFR) CKD. She referred me to rheumatology to rule anything out in that area (which found nothing abnormal in my labs), but said that my symptoms sounded more like sleep apnea. I had a home study done which showed I had moderate sleep apnea when I sleep on my back (which I was positive that I didn’t, but was wrong). I’m going in for a clinical sleep study soon to delve more into that situation. She wants to do a kidney biopsy to see if she can definitively narrow things down to see if I have a type of CKD that a steroid would help with. This disease is so confusing, and the fact that most nephrologists seem to be uninformed or especially unwilling to entertain the fact that their patient just might have some valuable input is frustrating. The fact that you can’t get a nephrologist to prescribe the medicine you want that sounds like a game changer irritates me! The fact that they tried to blacklist you from other nephrologists pisses me off! Sounds like Elaine from Seinfeld when they wrote ‘difficult’ on her chart and blacklisted her. That was hilarious, but not in real life. I try to approach doctors with the saying, ‘I like to research and educate myself about everything in life, which is what I am going to do with CKD‘, and hope that they’re receptive to that mantra. The question ‘What would you do if you were in my situation? Not try to educate yourself?’ usually gets them to think. My sister-in-law got sick while on vacation and by possibly a higher intervention, read an article on the way back to the states about a condition called radbomysolisis that she thought was what she had. She went to the doctor and told him that she thought she had radbomysolisis and wanted to be tested for it, but he poo pooed her and refused to test. The next day, and feeling worse, my brother told her to go back and demand that they test her for. What do you know? It was positive! And this was something that would have been devastating if not treated soon enough. Doctors!🙄
I love your attitude on what you put into your body and making sure that it’s not going to be detrimental. I’m not a huge veggie person myself, but I’m getting better about it. I think that I need to eat more smaller meals throughout the day as opposed to less but bigger meals. I truly appreciate your offer to answer questions and help in any way you can. That means a tremendous amount. I will try not to bug you too much.😁 Can we send messages directly to each other through this site? I just don’t want to clog up the threads with any questions/conversations. Again, thank you so much for your offer. I will definitely take you up on it.
To preserve kidney function keep your blood pressure under control and eat a low salt diet. Fish protein is easier for your kidneys to process than animal protein, and plant protein is easier than fish. That doesn’t mean never have red meat, just keep in mind it’s the hardest to digest of any protein.
I also have to add, sometimes diet changes like that really will not stop your disease from continuing but it’s individual. For example I became a vegetarian, took two blood pressure drugs and…nothing. GFR kept declining and my kidneys failed. Once they started scarring over it did not stop.
I agree with Blacknight that usually there is absolutely no way to regain kidney function, however my registered dietician, who has a master’s in public health plus her dietician certification, did “help” someone go from 3b to 3a. BUT…blood tests do fluctuate so it may only have been that and not “real” improvement. Who is to say.
Thanks for the reply. I’m trying to limit my diet to whole foods and avoiding any processed food. I didn’t eat too much processed anyway, but I’ve developed the mindset of not eating any at all, which after eating whatever I wanted to for the vast majority of my life, is difficult. My BP is under control, but I’m hoping that with diet and exercise I can lower it more and get reduce or get off of my BP med all together (Lisinopril 10 mg twice daily. I’m also trying to figure out which foods are inflammation reducing and kidney friendly at the same time. I just need to figure out my fatigue and muscle weakness/achiness. None of my blood tests have indicated what could be causing it, but when my eGfr was 34, my nephrologist didn’t think that my CKD was causing the issue, so we’re delving into sleep apnea, as she said that my symptoms sound a lot like symptoms of sleep apnea. I did a home study which showed I had moderate sleep apnea when on my back, but not when sleeping on my side. Waiting to schedule a clinic sleep study t o get a more thorough view of that issue. It’s really hard to exercise when you have no energy. The thing that truly bothers me about my insurance is that they won’t cover a renal dietician until I reach stage 5. I would love to work with a renal nutritionist, or a dietician, but that’s not something I can afford to do. I go in for a biopsy on the 1st, so maybe that will shed some light on things.
Hi. Congrats on changing your diet, that can be very hard. As others have said, there is no treatment to reliably improve kidney function.
... Though, I also went on a kidney diet when I was told I had CKD, and it happened to cause a lot of weight loss and other health benefits, and my eGFR did improve over the next couple of years, reported lately as "over 60", because that's all the lab will print if its considered normal. Had been as low as 22 when I was dehydrated and overweight. I recently had covid and a severe allergic reaction to Paxlovid, and am in no hurry to see if my eGFR is down again. I just live and stay on my diet and figure there's nothing else I can do.
I haven’t got a tracker I have just cut out things I have read about , Red meat, tomato’s, dairy I occasionally have a little chicken and I mean a little as I am not keen on it.
I have never drunk sodas but I am a caffeine addict so I stopped that and drink Tea and smoothies instead , No biscuits cake or pastries mainly because I have acid reflux.
No crisps or salty things.
I know I have about 6 to 8 mugs of liquid a day (/two of which I need to get going in a morning 🤣) I started taking Farxiga today so I will make sure I watch my liquid intake.
It would be useful if there was a tracker for CKD .
There is an app you can get that is a water tracker. I drank from the same water bottle all day so I knew how much fluid I was getting.
Do not over drink. There is nothing to be gained by that. Everyone is different. Not everyone can drink 64 ounces. My sodium drops if I drink that much. I can drink 58. Definitely you need at least 48, that’s the minimum.
There are apps that you can take a photo of your food and it may give you the calorie count? Not sure I’ve never used one. But you can take photos of what you eat all day and total it up at the end.
Watch your portion sizes and know what they are. If you do that, you don’t have to obsess exactly on calories once you get used to it.
You do well. I just can’t seem to keep within parameters without a way to keep track of what I eat. I tried a couple but they didn’t track water and sodium so what’s the point. I tried it by just writing things on a hand-written chart but thatwas laborious. I finally get to see a kidney specialist in about 2 weeks and will ask. Keep up the good work for yourself. Gussie
in the past when I was trying to lose weight I used CALORIE COUNTER app , it is a subscription service though it does tell you though your salt, protien fat, etc as well as calories and you can track your water and exercise as well I gave it up as the more I tracked the more I ate .lol it would be useful but you gave to pay.
I might try that again not for weight loss but to see the other stuff.
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