Has anybody managed to reduce their creatinine level (from 96 down to 94) within 3 months by diet alone? Mine has reduced by just 2 ponts eating very little proteine and increasing vege/fruit consumption. On the other hand it may have nothing to do with diet. Just wondered if anybody else has had a positive experience in this way. I'm not diabetic, over weight but have controlled BP. I have no Albumin ( the type of proteine which is measured) in my urine but in just over 2 years I lost 20% of my kidney function. It is now 50%. This is scary and I'm wondering if progression can really be reduced or stopped by diet? Is 3 months long enough to say I've turned the corner?
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Barty11
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There is no one magic bullet to reduce your numbers. It's actually a cumulative effort to reduce all numbers that helped contribute to the cause of the CKD. In my case, I had to get my blood pressure under control. It took trying different meds to help. It also took many years to get my Type 2 Diabetes under control. Now I have it in hand and only through diet and exercise, controlling my BP and not meds for diabetes. Two weeks ago on my last labs, my creatinine is back in the normal range, my daily Blood Sugar numbers are within the normal range for me and my A1c for the last three months is 5.4. My GFR has gone from a low of 32 to 57 two weeks ago.
Diet, exercise, watching my meds, taking care to stay healthy in every way possible has contributed to those numbers. It's not easy because when one thing gets under control and you work on something else, your numbers can increase. It's a challenge to get it all going the right way to get them all back in range. Staying there is not easy but it can be done. Having a strong Care Team who is willing to work with me is a great help as well.
Get your priorities in order and work on each one, and then move on to another. Good luck
As for everybody with CKD it was a major shock being diagnosed. No symptoms. The initial ultrasound showed structurally sound kidneys. I suppose a CT/MRI scan could throw some light on the reason for the reduction in their functioning? I have read though that in many cases there is/are no specific causes. That is to say that even if no BP/no diabetes/bad food/lack of exercise/meds are in evidence, CKD can still strike. I suppose in such cases there is no way of halting the disease?
I'm worried again! because none of my electrolytes are out of kilter and the Albumin level is so low as to be untraceable. Except I have increased PHT levels but none of the usual increase in serum calcium that goes with it.
Unfortunately in the UK we are not referred to a nephrologist until stage 4 is reached and I feel as if I have to battle against a head wind just to stand still. There are no privately working nephs in this area and my GP does not think a referral is warranted.
I should mention that I have had paroxysmal Atrial Fibrillation for the last 7 years. However this is well controlled (a minor episode 9 months ago) with an anti-arrhythmic drug. I'm not on anti coagulants though. If the drug (Flecainide - excreted renally) is causing the reduced kidney function, I would have a major problem in deciding in favour of one or the other, i.e. Kidneys or heart. My doctor says she does not think the Flecainide has caused the CKD but I believe it could aggravate the condition.
Any ideas in this situation? Does anybody else have a heart arrhythmia? How do I even know there is a connection. Feeling quite despondent again. It's such a roller coaster.
I am in UK as well. Same for me. No symptoms. Was diagnosed at eGFR 18% three years ago by chance as they did a blood test for cholesterol. Not diabetic, don’t have high BP or any other of the things that normally cause CKD. Now down to 16% but have been as low as 14%. I do see a nephrologist every four months but all they do is arrange blood tests and will refer me to the dialysis preparation unit when I hit 15% or under consistently.
I have never had any diet advice or anything practical from the health profession to slow the progression of this condition. I think I slowed down my fall following what I taught myself about diet from the internet and the good advice on this forum.
That is surely a very low figure - and no symptoms - to be diagnosed at. I thought by that stage people often had severe nausea and oedema amongst other unpleasant symptoms. I was tested for possible stomach bleeding which turned out to be negative but they discovered the CKD.
All my doctor advised me to do was stick to a healthy diet. Which I already was doing anyway. But after reading lots of articles on the subject and posts on this forum I drastically reduced my protein intake and upped fruit and vege.
Have you not even had a CT scan? I don't think this disease is taken seriously by the medical profession when one reaches a certain age (I'm 74), the assumption being that if it progresses at a 'normal' pace CKD patients will die of other causes. A bit like prostate cancer which a majority of men above 80 die with - but not from.
Do you take any meds and do you have any other health problems which might impact on the CKD? Sorry if I'm being too personal (no need to answer) but I have read that many CKD patients have other co-morbidities, especially heart problems. Like my arrhythmia for ex. or cardio vascular issues.
Your reduction in GFR by 2 points over 3 years is very little. That's good; does your nephrologist not comment on this? Have you changed any of your life style or were you already at max in terms of eating/med control, etc?
Where do you live in the UK? I live in the South East.
Before being diagnosed the only symptoms I had were that I occasionally had a metallic taste in my mouth in the morning, I did get very tired and sometimes I had the most terrible itching at night mostly on lower legs. I noticed that if I was out with friends of the same age as me I got tired much quicker than they did but I did not really think anything of it.
Yes, had ultrasound scan and MRI at Brighton. Nothing, no PKD, all the pipe works looked fine. I am only 51 so was only 48 when my eGFR was down to 18%. No, I don’t have any other medical conditions aside from Asthma which I did not develop until my 40’s. I just have an inhaler for that.
The docs suspect I have a condition called IGAN which is an autoimmune problem where the body attacks itself for no good reason. My nephrologist has commented on my slow decline as has my GP. When I was first diagnosed I was told I had between 3 and 6 months before needing dialysis.
Can they not establish with some certainty that your condition is indeed this autoimmune disease you mention, I think Bet117 has an autoimmune disease. She appears to have got it under control. She said her kidney function was within the normal range again. I'm sure she'd be happy to give you advise and support.
You have certainly proven your doctors wrong. It just shows how unpredictable the condition is. I do think that research into the condition is not a top priority, why else is there so little that is available in terms of meds to slow it down or halt it.
Of course patients must shoulder their own responsibility in terms of diet/exercise etc but once this is factored in, there should be meds to stop us from progressing to the dialysis stage.
Why is it that the public is so unaware of CKD? It seems to affect large numbers of people (especially the over 65s) and yet, few on the forum had any knowledge of it until they were being diagnosed.
Yes, you are young to have the condition but perhaps it has slowed down to the point you can go for years before dialysis becomes necessary. I think that at that point you will also be put on the transplant list. That is of course the best way to return to good kidney function. I don't think this is an option for me and nor would I expect it at my age. It is somewhat ironic that I carry a donor card.
Who is your nephrologist in Brighton? I didn't think the Sussex County Hospital has a nephrology dept., just urology?
If Bet117 has read your post she'll no doubt be in touch.
Yes Brighton has a huge renal department. I wish it was Hastings as it is long journey to Brighton and parking is a nightmare. The only way to identify for certain is by biopsy which I was told in my damaged kidneys was not advisable due to the risks. Also once you get below 30% then generally there is no turning back and the condition will just get worse (that is what I have been told) So at 18% with an expected 3 to 6 months it was not felt worth doing anything. Unlike livers which can regenerate to a large extent, that is not the case with kidneys. Once damaged that is it. Maybe in hindsight if they had of known my progression would have been so slow they might have tried treatment to halt it. Anyway too late to do anything now.
Just quickly: I read in one of your posts that you are on Ramipril that you suspect that this may be to some extend responsible for your reduced eGFR. You also said you had come off the drug were due for another blood test. Have you had the result - any improvement?
Pennyruss also thought her own kididney function was being compromised by taking Candesartan. This is what I am on. Can at least part of the explanation for reduced kidney function be BP meds? Both Ramipril and Candesartan are supposed to be kidney friendly though. What is going on here???
I believe the reason that this disease isn’t in the forefront of medicine is because the pharmaceutical companies can’t make money off of it since there doesn’t seem to be any meds to help at this point. Corporate driven is the answer.
And yes I changed my lifestyle. I used to smoke (although only about 10 a day) but I certainly liked a drink after work and every weekend. After learning that I had stage 4 kidney disease I changed my ways and packed up the fags, cut down on the drink (I don't drink alcohol at all now) and also cut out red meat and colas. I eat a lot more fruit and drink a lot of water. I used to add far too much table salt to food and now I don't add any. I cut down on dairy especially cheese. I try to walk at least 3,000 steps a day every day and I believe that this has all helped to keep me well. I still work full time but it is very tough. I have days where I wake up feeling well and have energy and then the next day I can feel really sick. There is no pattern or triggers that I have been able to pin point apart from cheese. I have a lovely big bit of cheese I pay for it the next day!
Oh please, not cheese. I don't eat red meat and have drunk perhaps a couple of colas in my life, don't smoke and don't even like alcohol but I must have cheese. I eat about a portion (30g) a day and alternate it with chicken. Like you I added lots of salt to everything and like you I have cut it out completely.
I go for a daily 1/2 hour walk along the sea front and as our house has three stories I'm up and down all day. I don't see what else I can do. I socialise a lot and food is intrinsic to it. It's very difficult holding back all the time and I wonder to what extend the occasional sin affects cretinine levels. Will I never be able to eat a tub of ice cream again without worrying that it will reduce my kidney function and that for ex. 3 months' good of sticking to the renal diet will be undone? How does this work? One slip and it's back to square one? Do you know and what does your neph say?
It sounds like you are doing all the right things Barty. Having had this for three years I can generally judge what will be ok for me. I still have ice cream but just not as much as I would have had once. If I do overdo it on something then I might feel rough the following day or itchy so I go easy and then the next day I am fine. We just need to learn to calibrate the quantity of things we can have. Also I am very lucky in that at the moment I don't have problems with high phosphate or potassium. When I first learned I had CKD everyone seemed to be saying to avoid bananas and tomatoes and I did for months and months. But now I know that for me they are still ok. Everyone is different so you need to look at the full blood results. The neph has never given me any diet advice. I asked specifically more than once and aside from saying cut down on salt that was it. I did once speak to a renal dietician over the phone but to be honest it was only a general chat and I did not learn anything from them that I did not already know from reading and following the people on this forum.
This may sound perverse, but your body’s negative response to anything it doesn’t like, is actually a very good thing. It’ll stop you from making too many mistakes. And in this way you are probably able to hold off the condition for some considerable time. It’s excellent that your electrolytes are not a worry at the moment. I believe phosphate can become a problem. But there phosphate binders are available as meds. You seem to have a very sensible attitude to your level of CKD. Do you stress about it? That’s my main problem. I see that 2 years ago my Gfr was 61 and now it’s 50. That is a big drop. I’d be quite satisfied if I could keep it there but like you I too believe that it will eventually get worse which is what I read in many articles. Could take years though. A friend of mine has it too but he’s been on Gfr 30 for years. It fluctuates a bit but he has no symptoms. I’ve never known him to eat a special diet and he likes a drink. Maybe I’ll include tomatoes again. I love them but cut them out because they are not considered kidney friendly. My electrolytes too are fine. Do you have Albumin in your urin? They are very keen on that. If it’s less than 3 then kidneys are still not too damaged.
Of course, if a person recognizes the negative response the body is telling them about and know how to stabilize it then it's helpful. If you don't recognize the signs or stress about the "slide" then it gets worse, not better. That's why it's important to be continually proactive and learn what you can about how each possible issue will affect you and what the warnings signs will be and what to do, other than panic if they begin. That last part is the hardest to deal with. I know because it's something I'm still learning to deal with.
This is so important because of each increase in protein, or potassium, or sodium, or anything else can be problematic and as we age things that were okay in months or years in the past may now be something we have to deal with. I may have retired from my full-time career(s) but who knew that in retirement my new full-time job would be my own health and learning about CKD.
So you are saying that a person who stresses easily (not just about CKD) is more likely to be on a downward path of the illness than somebody who is more relaxed in general. In that case we should be put on anti depressants. Not a bad idea. I might ask my GP.
My body does not tell me when I have eaten something that is bad for my kidneys. I have absolutely no idea from that perspective. I can eat a box of chocolates or cover my food in salt without feeling bad later. Nor have my electrolytes ever changed in 2 years but remain well within the normal range. Yet my kidney function has declined. There is not much I can go by to help myself. But thanks for your input. You obviously have your condition under control. I didn't know kidney function can be improved to the extend yours and it seems some of other people’s here has done. I thought once damaged kidneys could not regenerate themselves. I suppose it depends on the causes behind the problem?
Stress is not always from something bad that happens to a person. If you found out today that you won a huge amount of money in a lottery or an "Around the World" trip could be stressful for you. Both of those things are good but the idea of winning so much money or being gone on a trip could add stress to your life because of the details involved and the changes to your life.
Your body is sending you messages about the kidney function loss, but you may not be recognizing them as such, hence the loss of function. I don't know all of the issues you deal with, but if you research your numbers from the lab values you may find some answers.
Pharmaceuticals is not always the answer for depression. Lifestyle changes can do much to relieve that problem. So can exercise.
My kidney function has not improved in the way you suggest. My GFR has fluctuated between its low and high (now) because of diet changes, exercise changes, control of medications and self-monitoring of BP and blood sugar. With all of the ups and downs, I'm still at Stage 3. Kidneys do not regenerate. They can function at a better level when you control and maintain that control of your health. Many of us stabilized our GFR (which remember, is only a snapshot of the kidneys on the day of the labs) to the extent possible by making the changes we have. Others have and are staying within a particular stage for many years by maintaining those factors I mentioned.
While I and others were not told until much later than we should have about having CKD we were able to slow the progress down. If I had ignored the news back in June about having CKD and did nothing to change I could possibly be much closer to ESRD right now.
Hello Barty11 and Rabbit1, I live in West Sx and attend the Brighton renal team at Worthing Hospital. Parking is not too bad!
My GFR is 27 which is scary and I am labelled Stage 4. I had a marked decline about 3 years ago which one renal consultant thought might be due to the med I was taking for hypertension (Candesartan) which can apparently impinge on kidney function, so why was U given it in the first place? Anyway, I was attending at Worthing six-monthly but the last time I was told it would be a year before my next appt as my tests were all stable. The consultant said I would not be considered for dialysis until my GFR reading was 8, which is much lower than you've been told by the same department, so would that be due to cuts in funding or does this vary from person to person, do you think?
You have me seriously worried: I've been on Candesartan (Losartan before, but all the same ARBS family) for about 5 years. I was told and read in articles, that this type of hypertensive drug is actually kidney-friendly. I don't know when my CKD started as I can only track blood tests back to 2015. At that time my eGFR was 61. When I was diagnosed 3 months ago, it stood at 49. Panick stations of course. I immediately switched to a strict low protein no salt and kind of low potassium/phosphate diet and managed to shave off 2 points of my creatinine value. I know, big deal but at least no further decrease in GFR. My doctor had said no need for this diet, just eat healthily. I don't know if the diet has had a positive influence on my kidney function or if it had slowed down even without it. I'm still on Candesartan but have cut down to 4mg a day instead of 8mg. That is no doubt the effect of cutting out salt. I've also stopped the diuretic. I think they are bad for kidneys unless you suffer from oedema.
My electrolytes are completely within the norm and I have no proteinuria. I'm not diabetic, overweight but I have paroxysmal Atrial Fibrillation for which I take an anti-arrhythmic drug. This particular drug is not recommended as it's not good for the kidneys, but it has stopped my arrhythmia. My afib predates my CKD. Could be a connection.
I don't know what your GP is like but mine is blissfully unconcerned about my situation. I privately paid for an ultrasound scan (all ok) because she would not refer me.
You appear to have stopped the condition in its tracks. Any changes to your diet/meds?
Do you have any symptoms such as back pain in the waiste (I do, but not sure where it comes from), nausea, fatigue, etc.
I think that dialysis at 8 GFR is low but if you have no problems and your condition remains stable (I think you said 27) then no reason why dialysis is indicated.
How is the Sussex team? I don't think we have one in Eastbourne.
Hello Barty, I was first diagnosed with CKD at age 35 but no alarm bells were raised and I wasn't told what it was, or given any advice. I was simply asked to do a creatinine clearance test every year . I had high blood pressure and every few years the prescription drug was changed until eventually I was on candesartan .Years later, in my sixties , when I changed my doctor, she became concerned and referred me to the renal clinic. My gfr was around 50 then and that's when I realised there was something seriously wrong. The consultant nephrologist kept me on candesartan, which he said was safe but the following year I saw a locum who took me off candesartan because he thought that it was responsible for the rapid decline I had experienced over the 5 years I had been taking it. Maybe it just didn't suit me for some reason. I am now on Lercanidipine for high bp and things have steadied down.but I realized it was vital to pay serious attention to diet. I have been avoiding salt and processed foods for years anyway, so clearly that has not been enough. I do get back pain sometimes, but like you, I'm not sure of the cause. I certainly get fatigued quite quickly and I have itchy legs sometimes. No, I am not working now, having retired at 66. I have been attending the Renal dept at my local hospital for a few years and It is only in the last year that I have been referred to the Brighton Renal Team and so far have found them helpful and willing to answer questions and give advice. The renal dietician rang me to discuss diet at my request.
I'm amazed that you have been referred to the Renal Team already or has your eGFR declined from the 50 you mentioned? Mine is the same, having dropped from a still acceptable 61 to 50 in just over 2 years. My doctor just told me to follow a healthy diet but did not mention excluding certain foods. However, in the first panic after hearing the diagnosis, I switched to the kind of stage 4/5 diet which excludes practically all the foods I like. In particular cheese and eggs and chocolates. I'm not a great meat eater, so that isn't a problem. I'm not sure to what extent such a restricted diet is helpful at this stage (my doctor says no) especially as all my electrolytes are well within normal range and I have no protein in my urine.
I'm interested to hear that you no longer take Candesartan since I too have been on it for about 7years now. It is generally regarded as kidney friendly. I have also taken a CCB in the past, Nicardipine, which is the same family as your Lercanidipine. I think the main thing is to keep BP low and the type of drug is of secondary importance.
I too get tired easily (I'm 74) and often experience back ache. But it could just as well be arthritis or more likely muscular. I think that if pain is experienced from an organ it is not relieved by position i.e. lying or sitting down will not improve it. I do not get itchy legs but do obsessively check my ankles for swelling.
It's encouraging to hear that the Brighton Renal Team is helpful. My doctor will not even refer me to a nephrologist at the moment. So much seems to depend on your GP.
Sorry, Barty, I didn't make myself clear. While I was on candesartan I experienced a fairly rapid decline. I didn't in any way connect the decline to the drug but it was the locum who said he thought it could be the candesartan that didn't suit me. So my kidneys now stand at GFR 28 and I am 76. The nephrologist says there are lots of elderly people with kidneys in poor condition and most do not die of kidney disease! I have to report that after 28 days following the Carol Vorderman detox diet, my blood pressure has dropped for the first time in 40 years! I am now going back to my normal eating except for wheat, I won't find that too hard. Over the last 28 days I have had far less pain from arthritis in my knees and I'm wondering whether not eating wheat has helped, but I don't know yet. Like you, I don't eat red meat anyway, and I am seriously looking at the Davita recipes which were recommended by someone on here. I hope this helps.
From one test to another, my Creatinine went from 104-100 and GFR from 36.6-54. I am looking forward to my next blood work to see if I have maintained this, or improved again. As everyone else here has said, it takes many things to make this happen and it takes hard work.
Just a caution: I began keeping these lists right after I was diagnosed and have not had a chance to edit and delete, so use your discretion on what may or may not help you.
Dr. Andrew Levey, the chief of nephrology at Tufts Medical Center
patient.info/health/chronic...
healthunlocked.com/nkf-ckd/...
kidney.org/nutrition/Kidney...
healthunlocked.com/nkf-ckd/...
healthunlocked.com/nkf-ckd/...
kidneycoach.com/799/kidney-...
c.merriam-webster.com/medli...
renaldiethq.com/category/re...
labtestsonline.org/news/new...
kidney.org/atoz/content/Con...
labtestsonline.org/news/pat...
eatright.org/search?keyword...
healthunlocked.com/nkf-ckd/...
kidneyschool.org/mods/
drugs.com/
labtestsonline.org/conditio...
lifeoptions.org/learn-about...
kidney.org.uk/about-us/k-life/
google.com/search?q=Kidney+...
National Kidney Disease Education Program (NKDEP)
1-866-4-KIDNEY
nkdep.nih.gov
National Diabetes Education Program (NDEP)
1-888-693-NDEP
ndep.nih.gov
Michigan Diabetes Outreach Networks (MDON)
diabetesinmichigan.org
The American Diabetes Association
1-888-DIABETES (342-2383)
diabetes.org
The American Heart Association
1-800-AHA-USA1 (242-8721
americanheart.org
kidneygrub.com/i-have-kidne...
davita.com/kidney-disease/v...
rsnhope.org/kidney-101-just...
kidneybuzz.com/top-9-best-f...
Nutritional recommendations for adults with chronic kidney disease stages 3 to 4
Protein≤0.8 g/kg/day, increase plant source.
Salt<2.3 g/day (<5 g/day of NaCl).
PotassiumIndividualize to keep the serum potassium within a normal range.
Calcium1.5 g/day from both dietary and medication sources.
Phosphorus0.8 to 1 g/day or individualize to keep the value within normal range. Increase vegetable source and avoid processed foods as much as possible.
Carbohydrate/fat30 to 35 kcal/kg/day; <30% of total calories from fat and <10% of total fat from saturated fat. DASH diet pattern highly recommended.
Fiber25 to 38 g/day.
Learn more about St. Joseph Health Medical Group. Learn more about Dr. Adhye.
Resources
Mayo Clinic: Chronic Kidney Disease
mayoclinic.org/diseases-con...
WebMD: Understanding Kidney Disease
webmd.com/a-to-z-guides/und...
American Kidney Fund
kidneyfund.org
mcw.edu/Nephrology/Patient-...
renaldiethq.com/healthy-sou...
kidney.ca/blog/dietitian
kidney-symptom.com/chronic-...
renalnetwork.on.ca/hcpinfo/...
emedicinehealth.com/chronic...
niddk.nih.gov/health-inform...
Recipes
There are many resources for kidney friendly recipes. Here are a few helpful links:
•DaVita – Recipes: This website has over 1,000 renal friendly recipes and a free Diet Helperservice!
•The American Association of Kidney Patients – Kidney Friendly Recipes: A great resource with many recipes for all meals!
•The Kidney Foundation of Canada – Kidney Kitchen Cookbook: A community cookbook that includes options for beverages, breakfast, lunch, and dinner! There is also a meal plan option.
•The National Kidney Foundation – My Food Coach: Allows you to specify your diet between full renal diet, low sodium, and diabetic.
•The American Heart Association – Nutrition Center: Provides a lot of tips on dining out, cooking, and healthy shopping.
•Heart Healthy Online – Low Sodium Recipes: If you’ve been advised to follow a low-sodium diet, these delicious recipes are perfect for you – they all have 140 mg or less of sodium per serving.
•Mega Heart – Low Sodium Recipes: This site has a lot of low sodium recipes and there is even a kid’s section!
healthyeating.sfgate.com/he...
guysandstthomas.nhs.uk/reso...
ika.ie/education/renal-diet
renaldiethq.com/dairy-produ...
webmd.com has some good information on this as well as a good slide presentation to explain it to you. Some meds like Tamsulosin and others can help you if you have frequent UTI's and steady your CC level. Also, the site I use a lot to have labs explained islabtestsonline.org Give that a look and see if it helps you.
kidneyschool.org/
lifeoptions.org/learn-about...
Reply
lowraind
lowraindin reply to motolas
24 days ago
A little of my own background--I am 76, and was totally shocked to be identified at a GFR of 36.6. All I could think of was, "Why didn't someone tell me earlier?".
You mentioned watching sodium, potassium and little dairy. It is difficult, but since I was told that I had ckd, I cold turkey stopped eating chocolate (after a dark chocolate a day habit), bananas, potatoes, tomatoes, anything dairy (and I love cheese), all processed meats, and track everything that I do eat for sodium, potassium, phosphorous and protein. My "new" nephrologist told me that I did not to track my foods, but I find that, unless I am conscious of everything that I put into my mouth, it is too easy to get off track. This helps me, it may not be necessary for others. My "new" nephrologist may very well become my "old" nephrologist, since I want to find someone on the same wave length as I am on.
I am now in the process of examining my meds and have sent a list of drug interactions to my personal physician so that we can look at it together and determine changes that need to be made when I see her again in April.
That being said, here is a second list and I will take a break, since I am sure this is overwhelming. I am a type A over-achiever, so I will give you some time before I send more.
What can I say..... It is indeed an overwhelming list. I hope you didn't have to type it out. I cannot get the links by tapping on them.
I have had another look at my lab test. EVERYTHING is within normal range except the PHT which is somewhat elevated. This may be a case of parathypotheyroidism and I will put it to my GP next time I have a blood test. In the meantime I shall continue with a kidney-friendly diet. But thank you for the trouble you took in sending your extensive research list.
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eGFR 39/40 but GP doesn't seem concerned.
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Same Lab, Same Creatinine levels - Different Egfr's
