Went from Stage 3 to Stage 5 in 2 years - low protein diet?

[steve680]

I was first diagnosed with CKD in August 2006. I noticed blood in my urine and went to an urgent care and they sent me immediately to the ER. My BP at the ER was 260/140. The doctor in the ER tried to lower my BP too fast and I passed out and almost went into a seizure. I was in the hospital for a week (3 days in the ICU) while the doctors safely lowered it. My creatinine in the hospital was 2.9 Stage 4 (46 year old male at that time). It improved to 2.1 shortly after I got out of the hospital and started taking oral meds. I had an MRI done at that time to check for blood flow blockages to the kidneys and everything was normal. The doctors were not really sure what could have caused my BP to go so high at age 46.

BP has been fairly well controlled with meds since that time. My enlarged heart eventually became normal thickness and continues to be a stable size (I recently saw my cardiologist for an echo). My creatinine also improved over time and in Feb 2013 it was as low as 1.39 (almost stage 2).

Not sure why but my creatinine has been increasing since that time, possibly because I became a mild Type 2 Diabetic due to weight gain (A1C of 6.8). My creatinine went to 2.3 in Mar 2016 (bottom of stage 3), and now (June 2018) it is now 4.4 (GFR 14). I'm also somewhat anemic - hemoglobin is currently 11.0.

My old nephrologist retired and my new doctor wants me to start dialysis, but I told him I'm not really symptomatic yet, just a little itching and a little tired if I don't get 8 hours sleep. I told him I want to stay off dialysis as long as possible, but he doesn't seem to listen or care. He doesn't want to do a kidney biopsy or even order a new A1C (my last A1C was two years ago). I could have uncontrolled diabetes (currently not taking any meds for diabetes). My most recent Fasting Blood Glucose was 102, which the doctor said was "not bad", but I told him I still could have a diabetic A1C. He also doesn't want to help me with my anemia, he said "hemoglobin of 11 is not that bad". I'm thinking I could be perhaps be iron deficient since becoming more of a vegetarian. At least my lipid profile is good: LDL is 88 and HDL is 60.

I see the nephrologist next week to go over my most recent labs and am going to tell him I want to start the very low protein diet to defer dialysis as long as possible, since I've seen that a lot of people have raised their GFR and/or stabilized it via the diet. I also want him to order an A1C and possibly a kidney biopsy so at least we know what's going on. Perhaps I'm already doing those things to lower my A1C as I've lost 12 pounds in the last three months through diet and exercise. I would at least like to get my GFR back into Stage 4 range and maintain it there, but perhaps it's too late.

Of course, anyone how googles "kidney failure" comes across a lot of things which seem "too good to be true" cures, like stem cell treatments in Thailand or a kidney clinic in China which promises to get people off dialysis. Real solutions for CKD like the artificial kidney project at UCSF or stem cell treatments from the Harvard Stem Cell Institute seem at least 5-10 years away. Dialysis isn't the end of the world, but life will suck while on it.

I hope this isn't too much at once, but does anyone have any suggestions or helpful comments? Perhaps it is time to get a second opinion from another doctor. Thanks.

[Hidden]

You really should ask for a referral to a Renal Dietitian. You should have been on a kidney-friendly diet for a while now. Based on your numbers an RD can develop with you a diet tailored to your needs. I was put on a low protein diet, 8oz. per day, about 10 months ago and with medication control, exercise, and a Care Team that listens to me, and then accepts my decision.

I have Type 2 Diabetes and have been off all meds for that for one year. My last A1c was 5.4. Depending on your insurance you should have that taken every 3 to 6 months. I also have high blood pressure. I monitor that daily, and with the help of 1 medication, Amlodipine, have it under control. I had an issue with Lisinopril a couple of years ago that sent my BP skyrocketing and the ER found my potassium way too high. They gave me a couple of small bottles of Kayexelate and got it down, discharged me with instructions to see a local doctor (I was traveling at the time) and he placed me on Amlodipine.

If you are being managed by your doctor and not by your Care Team, you might want to consider switching to a more responsive nephrologist.

Good luck with your health.

[steve680 in reply to Hidden]

Thanks Mr. Kidney.

I should have mentioned that I have a scheduled appointment with an RD in a little over a week. I guess that's the time to discuss low protein diet and supplements. FWIW, I came across a medical study which said that COQ 10 was used successfully to get patients off dialysis: rejuvenation-science.com/re...

My GFR in Mar 2018 was 13 (creatinine 4.65) and has improved slightly to 14 (creatinine 4.44). Also, my protein in urine was 3.5 grams and it has improved to 2.9 grams, though that could be due to eating more veggies than meat these days. My cardiologist suggested that I get a second opinion from a nephrologist at UCSF since they have a very good reputation for kidney care (I live in the SF Bay Area). I see my existing nephrologist this Tuesday and will give you an update.

Best regards.

[Hidden in reply to steve680]

If COQ 10 was able to successfully get people off dialysis it would lead the newscast on every station, be the banner headline on every newspaper and be the top story worldwide. Haven't seen it. The study you referenced was done in 2005. What has happened in the last 13 years? Be careful of "fixes" offered by groups with a product to sell. Take your bottle of COQ 10 with you to your appointment with the RD and see if any of the ingredients are harmful to your health. Be wary. If you get the okay to continue to take it from your Care Team, then go for it. Just be wary of miracle cures.

[steve680 in reply to Hidden]

Thanks for the concern; I appreciate it. Yes, there are a lot of "snake oil" type of cures out there for kidney disease, but there does seem to be fair amount of science/research behind COQ10. I discussed COQ10 with my cardiologist at my last visit and he didn't have a problem with it. It's commonly prescribed for people with heart failure. I'll also mention it to my nephrologist and ask to have my levels tested. There has been some non-definitive research that indicates anyone taking a statin should also take COQ10 since the mechanism in your body which produces cholesterol also produces COQ10 (I'm taking a statin). I don't have the article handy but I read somewhere online that the Indian doctor (Dr. Singh) who did the initial study was labeled a "quack" by his peers and no follow up research was ever done. Not sure who to believe...

Although the statin drug has improved my lipid profile, my creatinine has gotten worse after taking it. There is some evidence here and there which have shown statin drugs can damage your kidneys: youtube.com/watch?v=tBdM1Yh...(Not working as expected?) - I'll also discuss this my nephrologist and talk about getting off the statin and use other methods to lower LDL. Unfortunately, doctors tend to be "behind the curve" on the latest research. Perhaps because they get paid by the office visit and not by the patient's outcome. FWIW, many FDA-approved drugs are taken off the market after too many or too dangerous side effects appear (or perhaps too many lawsuits).

I got in a argument with my nephrologist regarding when I should start dialysis. He seems to be OK for now with me wanting to defer it until I get more symptomatic. He'll probably tell me that the very-low protein diet is a waste of time and money, as that is what other nephrologists have told me.

The research on very low-protein diets and kidney disease has been non-definitive, but there seems to be more and more evidence that it is helpful in deferring dialysis: academic.oup.com/ndt/articl...

The doctor who's in charge of the Harvard Stem Cell Institute has said that historically research on kidney disease has been very under-funded, in spite of the percentage of the population which has CKD. This seems to be why kidney disease treatment options haven't advanced very much in the last 50 years, although they have gotten better at doing kidney transplants. Better solutions like the artificial kidney project at UCSF and stem cell treatment research at Harvard seem to be "just around the corner".

[rabbit01]

Your current levels are about the same as mine. I was diagnosed three years ago at 18% eGFR and despite whatever I do it falls and am currently at 12%. I am pretty convinced I have IGAN although it can't be proven without a biopsy. My doctor advised me not to have a biopsy due to the risks outweighing the benefits. In our case all the biopsy will do is prove the hypothesis. Interestingly I too have gained weight since being diagnosed so I was pleased to hear you have done well in reducing yours. I still work full time but mostly from home.

[steve680 in reply to rabbit01]

Thanks for the reply rabbit01. I'm curious why you think you have IGAN? Do you know what caused your initial kidney damage? Has your nephrologist told you to go get on dialysis since your in stage 5 like me now?

When my creatinine was 2.3 (stage 3), my old nephrologist told men we could do a kidney biopsy, but it wasn't necessary since it wouldn't change how we were treating my kidney failure. He retired shortly after that. Now I regret now having it done it, as I would at least understand better why the kidneys are now in stage 5.

At my next nephrologist appointment this Tuesday, I will ask the doctor to order an A1C as I can't get on the transplant list with uncontrolled diabetes. With a fasting blood sugar of 102, I doubt it's crazy high, but you just don't know for sure without an A1C. I will also discuss the kidney biopsy again with him, and though I know he'll probably say something similar to what your nephrologist said, I will add what my cardiologist said about it. In general, a kidney biopsy is a safe procedure done with a local anesthetic. I've had three operations done in my life - two wisdom tooth removals and a hernia operation - and I've had them all done with a local, FWIW.

[rabbit01 in reply to steve680]

I had no symptoms aside from feeling tired. I actually had a blood test for cholesterol and that's when they discovered I only had 18% kidney function. At time of diagnosis they told me I would need dialysis within three to six months. Fortunately that period has lasted o we three years but over that time the kidneys are losing more and more. I don't have PKD, all the pipework is in good order and I don't have diabetes. I do have an autoimmune condition called pernicious anaemia and many people who have that also have IGAN. So I am pretty confident that is what I have.

[rabbit01 in reply to rabbit01]

I should also have added that my nephrolgist has strongly suggested that I start thinking about dialysis and I predict that when I next see her at the end of July she is going to want to put a plan in place.

[lowraind]

I definitely think you should find a different nephrologist for a 2nd opinion. Although, I wonder, from your statement: "He'll probably tell me that the very-low protein diet is a waste of time and money, as that is what other nephrologists have told me.", if you have already seen other nephrologists?

While they seem to have told you "the very-low protein diet is a waste of time and money", then, I ask, why, as one's kidney worsens, do they advise a low sodium, low potassium, low phosphorous, low protein diet. I have also been told that I do not need to watch my potassium, phosphorous and protein, but I firmly believe that if this is what they tell you in later stages, then I am going to do it now, to prevent my getting to later stages.

[rabbit01 in reply to lowraind]

The only thing I have ever been advised to reduce by my nephrolgist is salt. I asked about cutting down on protein but they said don't bother. That said I still did. Barely have any red meat, cheese or fish.

[steve680]

Hi lowraind, thanks for responding. Yes, I'm on third nephrologist since I was first diagnosed 12 years ago. I changed from my first nephrologist because he had a horrible bedside manner. My second nephrologist is now retired.He was the one who expressed a negative opinion about the very-low protein diet, i.e. it is not that effective. However, you bring up a good point about why do they in that case tell patients to follow a "restricted protein" diet if a very-low protein diet is not with the time and effort.

One reason, I think, is because the very-low protein is typically very expensive because health insurance doesn't cover the amino acids. I believe the amino acids, like vitamins, are considered "food", not drugs. All health insurance companies only cover those drugs listed on their drug formulary.

So there's that, but perhaps more importantly there seems to be a significant amount of controversy on the very-low protein diet. Here's a study that says "protein restriction" and "blood pressure control" slow the decline of renal function in patients with "moderate" renal disease. It also says that a very-low protein diet for those with severe renal disease, don't get much benefit from it. However, this is just one study: nejm.org/doi/full/10.1056/N...

FWIW, here's an MD doctor who says that it's ANIMAL protein that causes renal decline and that eating PLANT protein will also the decline in patients with renal insufficiency:

nutritionfacts.org/video/wh...

[lowraind in reply to steve680]

steve,

I do not know about very low protein, but I do think low protein is the best for us. There is much information that we eat entirely too much protein. Just as a balanced diet is needed overall, I think a balanced, low salt, low phosphorous, low potassium and low protein diet is call for in ckd. Don't know if you have read any of Mathea Ford's books, but I did find them helpful in creating my own meal plan.

lowraind

[Hidden in reply to lowraind]

Perhaps this article will help clear up some of the confusion and uncertainty regarding a healthy diet for people with CKD.

niddk.nih.gov/health-inform...

Please remember that your individual, specific numbers from your lab values are what drives the specifics in your individual diet. No diet should be accepted as is, regardless of it's supposed good benefits for someone with CKD. Every recipe should be adjusted by each patient to reflect their needs based on the numbers of their previous blood/urine tests.

[Kbressler NKF Peer Mentor NKF Ambassador]

I am going to be straight forward. Your requests for A1c and biopsy are spot on if you do not get these done you need to change doctors. Two things for sure 1 you have diabetes and 2 you have Kidney Disease. It is imperative to get your diabetes under control and also get a diagnosis on what type of kidney disease you have. The only way to diagnose is a kidney biopsy. I would also suggest that you start thinking and learning about kidney transplants I always advocate for preemptive transplant before dialysis. I am involved with a 501c Kidneysolutions.org. We provide education and transplant support. Good thing is we do not bill for any services so it is free. Check it out.

[steve680 in reply to Kbressler]

Thanks for the advice. Good points. Now that I think about, my creatinine started to tank in early 2016 once my A1C went above 7. Even if it's not the main cause of the decline, I'm sure it didn't help. I've never been on diabetes meds. I will demand an A1C on Tuesday. Of course, I could always buy one of those do-at-home A1C kits that they sell at the drug store, but the doctor needs to order it anyways since uncontrolled diabetes is a disqualification for getting on the transplant list. When I brought it up before he said something like "your kidneys are too far gone to put you on diabetes medications anyways". Perhaps I'm already doing what I can do about it - getting it lower the "old-fashioned way" - exercise, weight loss and diet.

[Kbressler NKF Peer Mentor NKF Ambassador]

You are now your own best advocate you can get advice but that is cheap.nyou need a Nephrologist you trust and can work with you closely. I was transplanted 31 years ago and have a wealth of info to share but it is up to you to manage and care for your health. I can’t stress enough the importance of excepting and embracing your diabetes and kidney disease. We are here to help but you are the one responsible for your body and health. We are truly blessed but we cannot do anything unless we know what we are dealing with. Kidney disease and diabetes are chronic and need to be managed very closely.

[Bassetmommer NKF Ambassador]

Steve, You seem to be doing very well about getting educated about kidney disease. That is the best defense. I am at stage 4 after being in stage three for many many years. My doctor changed my medications and my glucose was not being controlled well. It caused me to slip into stage four with a GFR of 23. I was anemic and my potassium was over 5.1. First thing I had to do was get the A1c back down which I have done by diet and meds. I have my own glucose meter, which is not the most accurate measurement by the way. I get an A1c reading every three months now as it has such a a major impact on the kidneys. Then I saw a renal dietician who recommended I go more plant based and knock out animal protein as much as I could. Easy for me since I only ate chicken and turkey. I then was prescribed over the counter iron and also sodium citrate to lower my uric acid. I also make sure I do not eat foods high in purine ( turkey). And yes...my diet has made a huge difference. My energy is 100% better. More energy, more movement: lower a1c. I have lost 16 pounds in a month and a half. So I hope you get a good dietician. I caution you to be discriminatory about some of the information on the internet. I have found it to be inaccurate and contradictory to sound clinical advice. Keep asking questions and advocating for the things you need such as labs.

[KidneyCoach NKF Ambassador]

You've offered a lot of information. While it does seem your nephrologist isn't really hearing you, it may be time to have a serious talk with him about your desires and asking for his support. May I suggest going to kidneyschool.org and checking out the great educational modules provided. Keeping your residual function as long as possible is likely best for you. It is a very individual and personal decision based upon symptoms, bloodwork etc. Finding a physician to support you in this may not be as difficult as one would think. Wishing you all the best & Blessings

[miketrial]

Too much protein, especially Animal protein, can be damaging to the kidney. Check out DrMcDougal.com and NutritionFacts.org. They site research that says a whole food, plant based diet (vegan) is best for prevention.