Very low protein diet + keto analogues - Kidney Disease

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Very low protein diet + keto analogues

Stavrosang profile image
41 Replies

Hello,

I have recently read Lee Hulls book Stopping Kidney Disease and plan to try a very low protein diet + Albutrix keto analogue supplements. I am interested to start a specific post where anyone keen to try this diet and those following it can post questions, experiences and feedback.

I understand this should be supervised by medical professionals and plan to discuss this with my nephrologist at my next appointment in September before starting.

I have IGA Nephropathy and my egfr is around 58. Same story as others here in that I was not given much in the way of options until doing my own research.

I have started following a whole food plant based diet and have found a lot of good resources online to support me including the forks over knives app. I am feeling better and have lost a bit of weight so far. It will be interesting to see my blood tests in September at my next review with my nephrologist.

I have also started to educate myself and am building a weekly diet plan to satisfy the very low protein plan.

Is anyone else trying this and wants to share their experience?

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Stavrosang
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miketrial profile image
miketrial

Whole Food Plant Based is the way to goq

Tuolumne profile image
Tuolumne

I'm a big fan of Lee Hull. I've had one test after trying his diet for maybe five months. My GFR didn't really change. (It's in the 50s.) I fiddled around with his diet and other plant-based diets, not being *perfect* with them but being probably 98% vegan and 100% vegetarian. I'm still waiting to see improvement. There is too much evidence that plant-based is the way to go, and I'm not discouraged. I need to lose more weight, and extra weight can make an impact on GFR. (I'm steadily losing weight, but slowly, as my doctor seems alarmed by fast weight loss.)

My doctor is not against this diet. Doesn't seem very enthusiastic but isn't troubled at all. Another doctor (in the same practice) is very enthusiastic and expects my kidneys to keep on functioning for many years to come.

Since I have been a vegetarian for years, adopting this diet wasn't very hard. I call myself "almost vegan" because there is a philosophical aspect to veganism that isn't present in this diet (and besides, Lee Hull's diet isn't 100% vegan!).

I noticed that some other small but annoying health problems I had been having have started to fade since I started this diet. I believe that it'll get me to where I need to go eventually. Right now I need to be stricter with it. (Like for instance today I had a Loma Linda fake burger that has wheat in it. It's certainly better than meat, but not adhering to Hull's diet!)

Stavrosang profile image
Stavrosang in reply to Tuolumne

I agree there is far too much evidence that plant based is the way to go. It will be interesting to see how this diet effects my blood tests in September. I feel much better already anyway so even if I can maintain what I have that will be a great start

Beckett24 profile image
Beckett24

Hi, Stavrosang,

My wife and I are on Mr. Hull's plant based diet plan on a somewhat loose manner.

I have dairy once in a blue moon, and sausage/beef in Costco's Sausage Lasagna with meat sauce a few times per year. What keeps us going is buying the Beyond Meat Beyond Burgers at Costco. They are plant based, vegan and delicious.

Anyway, my eGFR went from 42 to 62 and my wife's went from 67 to 91... yes, 91 within several months.

We take in about 40-50 grams of protein per day and seem to be doing fine. Remember to keep on eye on that Albumin lab test result. You want it around 4.5.

Your phrenologist will probably know very little about proper CKD nutrition. Ask him for a referral to a registered renal dietician (good luck finding one).

I would try the Lee Hull diet first without buying the Albutrix and stick to it. Since you're already on a plant based diet, it should not be much of a stretch.

Stavrosang profile image
Stavrosang in reply to Beckett24

Thanks Beckett, those results are fantastic! I really get energy and motivation from hearing this type of experience. I am trying to get a renal dietician but it’s not so easy where I live unless your coming up to dialysis. I am searching online and will see how things go. Thanks for your response! Very motivating

Beckett24 profile image
Beckett24 in reply to Stavrosang

You're welcome, Stavrosang. Good luck. And remember, only you can take care of yourself.

Skeptix profile image
Skeptix in reply to Beckett24

That's a result alright!.

Am I right in assuming that when you were at 42 eGFR, your urea/BUN readings were out of spec, along with your creatinine?

What's the story with them now then?

I'd have imagined the reason why Hull/the science suggests supplementing with the likes of Albutrix ... is to get (kidney/body toxic) urea levels down. A nitrogen-free protein source having a direct reductionary impact on serum urea (nitrogen).

How do you manage this without a nitrogen-free protein supplement?

Beckett24 profile image
Beckett24 in reply to Skeptix

It's funny in a way. My results show what proper diet can do for CKD even if you cheat a little. My wife's results show what proper diet can do for CKD if caught early -- an eGFR of 91 is pretty healthy.

I do remember my urea/BUN were out of range until my scores started improving.

I might do better with Albutrix, but it would be a financial burden (whoever said money can't buy happiness, forgot that it can buy health... LOL).

The only think I can think of is that I am not eating a lot of protein at 40-50 g per day -- nitrogen free or not. I actually wonder if the eGFR would go way up for a CKD person that fasts for several weeks since there would be no protein intake (or any food intake).

My all important Albumin reading is 4.3-4.5 eating this way. Mr. Hull considers 4.5 perfect. Don't forget those Beyond Meat Beyond Burgers available at Costco. They are great.

Skeptix profile image
Skeptix in reply to Beckett24

I'd guess that if your urea is in spec due to diet then there'd be no need to supplement. Whereas if urea isn't in spec - even if not hugely out of spec - then you're consuming too much protein. Lee's position is that anything out of spec increases the rate of kidney decline.

Agreed on the price of keto's being a negative. I'm not quite sure how a single pill (5gr equiv protein) can cost a dollar.

As I understand it, your urea is the product (or waste product) of protein consumption but creatinine not so much. That's the product of muscle breakdown through normal activity. If your creatinine is in spec then that's certainly good news, since it would mean your kidneys are functioning sufficient to clear it.

I thought I'd obtained salvation in the Beyond Meat route. They really are good. Until I read about their not being the healthiest due to salt/saturated fat/heavy processing. Although cheating a bit on Lee, I figure not to cheat THAT much until such time as I figure out how optimal I can slow kidney disease progression!

Stavrosang profile image
Stavrosang in reply to Skeptix

Hi Skeptix, have you had any results since starting with Albutrix? Are you also managing to remove grains? That’s the area I have not been as compliant as I would have liked. I am planning to start with Albutrix in September unless I have good reason not to from my next set of tests. I am very interested to see how you get on with it

Skeptix profile image
Skeptix in reply to Stavrosang

I started on ordinary low protein, plant-only whilst waiting for albutrix to arrive in Ireland. So only a month and half on very low protein + Albutrix.

But I'm getting bloods done anyway this or next week. I'd imagine some kind of shift on urea if only because of the decrease in dietary protein via low and very low diets over 10 or so weeks.

Grains? Not wholly out but very little. I found a low protein rice bread which toasts okay for a sandwich. And very occasional rice. Luckily potassium is being handled by my kidneys so potato's form the carb accompaniment.

Don't worry for better or worse I'll post what comes out in the wash!

Beckett24 profile image
Beckett24 in reply to Skeptix

Well, in my opinion, eating a Beyond Burger - which is Vegan and plant-based - 2-3 times per week will have negligible effects on your kidney health.

A hamburger bun with the Beyond Burger has about 900 mg of sodium if I recall. As long as you don't eat anything else salty that day, you are way ahead of the curve. The old AMA sodium daily limit was 2,300 mg, the new one is 1,500 mg, so you have plenty of leeway.

Also, a small. occasional amount of saturated fat will not harm you either. As far as heavy processing, it does not affect nutritional value -- at least in this case.

My TOTAL cholesterol -- HDL + LDL -- has been around 130. So I would not pass on the occasional Beyond Burger.

We also occasionally eat a Kirkland Signature Cookies and Cream protein bar from Costco -- about 22 grams of milk based protein and 15 grams of fiber. Although it is dairy based, it's much better than eating any type of meat.

We make Orgain brand Vegan protein powder shakes by adding Naked Juice fruit blends (all natural - no sugar added), ice and frozen strawberries or dark sweet cherries. Our only sin is using Equal as an additional sweetener.

We buy everything but the frozen cherries at Costco.

I think the key term is occasionally. Otherwise, we could never do the true Lee Hull diet and stick to it. The other key factor is to keep protein at a minimum, although plant based protein does not seem to affect kidney function.

Skeptix profile image
Skeptix in reply to Beckett24

I suppose you have to rank Lee's various advices in order of merit. He's all out and, if we suppose him 100% correct, is aiming to eliminate each and every factor to the absolute max possible. Limiting protein would be a big hitter. Reducing salt high up the list but not necessarily the hardest thing to do. The odd processed food isn't going to kill you but it is, I gather, highly processed. Since I work in the highly processed food industry, I would have already tended to stay clear, knowing what I know about that industry.

I w as probably from that position that I commented. I'd have a beer a night, which is contra Lee. Each to his own contra-Lee I say!

Ziggydoodah profile image
Ziggydoodah

Just wondering if you are still following the diet and if you have had your blood results yet? Im following a plant based diet and very curious to find out any improvements you have. Much appreciated.

Skeptix profile image
Skeptix in reply to Ziggydoodah

Hi Ziggy.

Yeah, still on it. I'm averaging a 30gr dietary protein + equivalent 20gr keto acid analogue protein to get to 50gr protein overall per day. That to hit thr 8gr/kg body weight target set

First bloods after about 3 months. Urea had been well out of spec at 13.5 (range is 2.5-7.8). That's now 6.5.

Cholesterol had been 6.6 and is now 5.4.

Impressive but not surprising results. Eat less dietary protein and you'll produce less urea afterall. I dunno how.much dietary protein I was eating but probably 70gr a day. And now only 30gr a day. So a not unexpected result.

Ditto cholesterol. Eat no meat = eat far less saturated fat = cholesterol drop.

Creatinine is the same at 200 (top of range is 113 iirc). But I never drank water except via coffee and beer! Renal dietician has specified 1.5l a day to rise to 2l a day. I've put on a solid 1 kg because of that (not fluid retention) so it appears J was shrivelled! I'm expecting my creatinine to go down next blood.

Hemoglobin is down as is iron. Not out of spec but touching the lower end of range whereas they had been middle of range. It might be the former is the result of the latter. But I've got an issue with a spot of proctitis and the med for that can affect hemoglobin. I do need to chat to dietician about iron and how best to get that on board. Apparently plant iron is 't absorbed as well as yummy animal iron.

I notice, from my Cronometer app tracker, that my diet is now very firmly alkaline which is again, not surprising but good to know.

Urea and cholesterol are great to see go down. Urea is kidney -damaging when elevated so at least that slide halted. Cholesterol could do with dropping more but it well might by next blood

Stavrosang profile image
Stavrosang in reply to Ziggydoodah

I am really glad I stumbled upon this site and found a group of people focussing on the same issues. Awesome.

I’ve been following a plant based diet for around 3 months now and will have blood tests next week. I’ll also see my nephrologist in around two weeks and start on the vlpd with keto analogues. Will be interesting to see how the bloods are after dietary changes alone. So far I don’t have a renal dietician and I feel like I’ve been under-eating a bit recently. Need to focus on using the Cronometer app a bit more. Will post results from the next blood tests anyway and keep updating this message trail as I go with the new diet with keto’s

Skeptix profile image
Skeptix in reply to Stavrosang

If you're under-hydrating you might consider attending to that before you next bloods, apparently it affects your creatinine thus eGFR.

I find it hard to track every day but if you pick some days and track properly you will build up a decent picture over time..

You might need to press on the renal dietician bit. It's hard work learning all there is needed to be learned given the diet you're about to go on (and are on). I was religious about salt intake (since everyone says "cut out salt" only to have my dietician explain that I need salt and to start adding some more to my diet.

It's good to have the sense of folk watching your back in terms of things you might not know.

Best of luck with it.

PS: what was your urea last bloods?

Stavrosang profile image
Stavrosang in reply to Skeptix

Thanks a lot, it’s great to have a small group of people to actually discuss these things and you’ve raised a lot of good discussions.

My urea actually went from 10.5 in March to 7.3 in June. That was with about 3-4 weeks of mostly vegetarian / vegan eating.

My blood albumin levels have been consistently below the recommended range so I am hoping with Albutrix I can increase the albumen levels without increasing the urea. Hopefully with the more anti inflammatory diet and more protein I can get it back in range. There’s a lot in Lee’s book saying blood albumin levels gave a good overall picture of how your bodies doing. I need to focus on that one

Skeptix profile image
Skeptix in reply to Stavrosang

Congrats on the urea. It encourages to see something move cos it gives you conformation that this is a steerable ship. And, I gather, progress helps prepare you for times when you don't get the result you want or expect.

Urea going down is the direct result of protein intake going down, afaik? Changing from animal to plant protein but comsuming at the same quantity intake levels gr/day ought not have resulted in a change in urea, (AFAIK. Meaning, your urea down result is likely the result of lowering protein intake overall rather than just from the switch to plant. Could be fine (if you were over consuming protein prior to embarking on the plant based diet. Or you might well now be under consuming protein (which isn't good). But low urea albutrix would help that

"Meten is weten" (dutch: measuring is knowing) so that would be something to nail down to help the steering

Hoping the best for you.

Stavrosang profile image
Stavrosang in reply to Skeptix

Good point on the quantities of protein, that’s one thing I do feel I’ve not been maintaining well the last couple of weeks and needs a refocus along with tracking with Cronometer. Hopefully I can get some support from a dietician after discussing the keto plan with the Neph. I’ll also sign up for an online course with the Kidney RD people.

I didn’t calculate pre-change in diet levels of dietary protein but I am very sure they were way above the recommended guidelines. Lots of meat and fish and not much green stuff.

I am also losing a fair bit of protein in the urine so hopefully these dietary changes to reduce inflammation keep reducing that loss. Last tests in June noted a 50% reduction in protienurea so it was a good start. Will see next week if I’ve managed to maintain or improve that

Skeptix profile image
Skeptix in reply to Stavrosang

Looks like you've more benefit to come with vLPD+ keto - you can still be horsing in the protein on a plant based diet at the moment.

I noticed an apparent improvement in proteinuria. Used to always be foamy, sometimes very much so. At times now though, there's no foam at all. Drinking more water will have helped - I'm drinking far more recently but noticed an improvement once plant based.. Could be that under hydrating bumps the proteinuria number falsely, based as it would be on an overly concentrated sample.

You on ACE inhibitor (to reduce the proteinuria)?

Lots of meat and fish. Yum!

Stavrosang profile image
Stavrosang in reply to Skeptix

I am on an ARB which I read performed a similar job to an ACE. I don’t remember it reducing the proteinurea by much or blood pressure so that’s another thing that I’ll bring up at the next app with the Neph. Might be worth switching.

Is protienurea something you have been tracking? I suppose if your blood albumin is in range then there shouldn’t be high amounts of it going out in the urine.

Just worked out that ACR is used to estimate the 24 hr protein spillage in lieu of a full 24hr collection. Seems I am actually losing a bit more than I had first calculated so need to really focus on that. Somewhere around 1.4g per day.

Time for some time off kidney chat for the weekend 💪Have good one

Skeptix profile image
Skeptix in reply to Stavrosang

I've just spent an afternoon off inputting all my bloods going back since first diagnosed. Inputted a few spot / 24 hour urine as well. This all to start to get a structured overview of things.

(fascinating how much is checkable in bloods)

I haven't monitored proteinuria - other than noticing that when I missed out on my ACE for a few weeks (and happened to have a blood test), I started spilling bad. 2235mg/L albumin. Once on the ACE again, this dropped to 650mg/L . This was all before going on vlpd+keto / drinking water. I'm awaiting (with interest) most recent spot urine results.

Urine isn't something I've paid much attention to but will. After a break from it myself.

Good weekend to yourself Stavro...

Stavrosang profile image
Stavrosang in reply to Skeptix

Just got my blood and urine test results back today and had some good improvements across the board. I’ve been fairly good at sticking to a mostly vegan diet with a few cheeses added in now and again for good (bad) measure.

Serum albumin has not been in range since I started this adventure around 8 years ago. Likely because I was losing so much protein due to inflammation / something. It’s now just inside the range.

31.8 g/L June 21

36.7 g/L Sep 21

Range is 36-48 g/L

I am not going to celebrate too much on the creatinine and egfr as these are likely to be influenced by my new diet but they both improved and it’s a good result to get them closer to normal.

Serum Creatinine

135 umol/L June 21

115 umol / L Sept 21

Egfr

57 ml/min/l June 21

69 ml/min/l Sept 21

Albumin Creatinine Ratio (can be used to work out 24 hr proteinurea).

160.6 mg/mmol June 21

66.6 mg/mmol Sept 21

Urine creatinine was 10.8mmol in Sept 21. (Converted to 10800 umol/L for calc)

Urine protien (used micro-albumin) : 721 mg/L Sept 21

Would be good to get a second opinion on this one but using my urine creatinine number and urine albumin I get around 0.6g/ day. I am not totally convinced that’s right but it’s a fair drop anyway and I’ll take it. The tools I used to convert ACR to 24 protein are below for info / scrutiny.

mdcalc.com/urinary-protein-...

kidney.org/kidneydisease/si...

Cholesterol is all within range.

Urea is middle of the range and uric acid is still too high but getting closer to normal.

One parameter that is increasing is PTH which I’ve never paid any attention to but looks like I should now. It’s out of range and increasing. Also, vitamin D is missing from the results so I need to check this one to see what’s happened.

All in all a good result for 3 - 4 months effort and hopefully much more to come.

I’ll start a new thread with these results as I think it’s very motivating and hopefully will convince others of the merits of this approach. I am also going to hold off on starting the ketos until I stop seeing improvements with just diet.

Have a great weekend !

Skeptix profile image
Skeptix in reply to Stavrosang

Well ain't that good news! Pretty dramatic movements on a number of front so congrats. It is something of a relief to have confirmed that you can actually get purchase on the steering wheel.

Wonder if it'd be worth getting an actual 24hr urine done so as to begin to get hard evidence to work with. These piddling (excuse the pun) samples we give can't be sensitive enough for steering purposes.

Read around a bit more on the keto rational I'd say. At first sight the benefit is less urea (and yours is in range) but there might be more to it than that (e.g. perhaps protein is hard work for the kidneys). There is clear benefit of keto versus low protein and it would be good to understand why that is. I don't quite myself I had urea problems so was looking for the most compelling benefit.

Again congrats

Stavrosang profile image
Stavrosang in reply to Skeptix

Thanks for the congrats! It’s a good day today.

Agree on the 24 hr sample, that can be a task for the next one and I can also see the point on keto’s. I was just thinking to ride this diet for a bit longer and see if I plateau or manage to keep improving until I am near the holy grail where everything is in range. Better not get too far ahead of myself for now because something will be just around the corner ready to knock me off my high horse

Skeptix profile image
Skeptix in reply to Stavrosang

High horse Indeed. But not necessarily so. You've a high (now higher) eGFR so have some wriggle room.

Run your figures through the latest NKF eGFR calculator ( info posted today on the kidney feed). Mine went from 29 (old calculation) to 31 (new calc). Free eGFR points right there to boost your weekend!

Stavrosang profile image
Stavrosang in reply to Skeptix

Yes, that’s a nice bonus on the egfr.

Getting a feeling it’s possible to have some control over the ship is also very good. Who knows where this will go but at least there some hope now. And that’s worth a hell of a lot to a lot of people

Advidkc profile image
Advidkc in reply to Skeptix

What is ACE

Skeptix profile image
Skeptix in reply to Advidkc

Angiotensin Converting Enzyme inhibitor or ACE inhibitor or just ACE.

Primarily a BP med but in CKD used to reduce proteinuria.

Blackknight1989 profile image
Blackknight1989

The new NKF dietary study released in 2020 supports Hull (or vice versa…and the study completed generally supports Hull for stage 3 CKD and worse.). The study is a complete and total departure from the 2010 NKF dietary recommendations and does proponent plant based protein with the plant based protein supplements recommended for some. The new study results as well as the dietary recommendations for CKD suffers can be found on the NKF website.

REMEMBER as with anything you want to eat, drink, ingest or otherwise put in your body…if it involves something new…CHECK WITH YOUR NEPHROLOGIST, TRANSPORT,ANT DOC OR GP

BEFORE……I SAID BEFORE

you put it in your body.

A couple of months ago I was involved in a discussion about supplements on this site. I used to be a big supplement guy but haven’t been in the last 20 plus years. I do take fiber pills and a probiotic it that is all.

Newly released information by NKF by their Council on Renal Nutrition regards another recently completed study by NKF, NIIH (National Center for Complementary and Alternative Medicine. ncam.nih.gov) and Herb-Drug Interaction Handbook, second edition. Sharon Herrr, RD, CDN. 2002 Consumer Lavs, consumerlabs.com contradicts the fact that supplements are safe for CKD patients, in fact the study found that over 29 different supplements contain harmful amounts of Potassium, more than 21 different supplements contain Phosphorus and more than 18 that should be avoided at all costs like alcohol or NSAIDS.

These issues are IN ADDITION to the other know issues with supplements. These include many supplements contain aristolochic acid, which is harmful to kidneys, of produced in other countries most likely contain heavy metals, there are very few scientific studies proving the efficacy of ANY DIETARY SUPPLEMENT, many affect how RX meds work in the systems of CKD patients, and there are many supplements that act to our bodies as a diuretic.

SO NO GOOD REASONS TO TAKE ANY DIETARY ACCORDING THE THE NKF AND NIIH!!!

Blackknight1989 profile image
Blackknight1989

In addition to the info above about the dietary recommendations updates and the relatively new Council on Renal Nutrition…the NKF is using the Council to better disseminate educational information and significant updates to patient and providers. To this end on major step NKF has taken is a massive internet campaign that we can help with. Thus despite what our Irish friends and more embarrassingly the Irish doctors/ Physical therapists are bad-mouthing the USA and the NKF specifically by spreading false info that they are not updating physician guidance through the KDOQI. In fact the nutritional study AND THE supplement study was done to update the KDOQI US Commentary on the 2012 KDIGO Clinical Practice Guideline for the Evaluation and Management of CKD. Am J Kidney Dis. 2014 Mar 16.

So while our medical professional friends in the UK are telling UK patients that NIIH/NKF and others are providing no new updates for clinicians on nutrition or updating any of the physicians guidelines that were published through NKF in 2010-2012. In reality the Irish docs were completely wrong, ignorant, or just didn’t care to lie to patients. Significant Nutritional guideline updates had ALREADY been published when UK nephrologists were telling patients they were waiting on the US to do “something or anything” to take the lead in physician clinical practice guidelines updates. All the while UK docs were telling their patients that were “waiting in the USA and until we acted in some way that the UK patients would suffer under 10/12 year old guidelines of evaluating and treating CKD. Yet we had started this campaign before some UK patients were misled by UK physician. Specifically the nutritional recommendations.

All info I referenced in this post and the one I posted before can be easily found on the NKF site.

NKF Promo for Meatless Mondays.
Skeptix profile image
Skeptix in reply to Blackknight1989

Quite why Irish or UK doctors would complain about the NKF I do not know. A US organisation has no obligation to Ireland or the UK. If not happy to wait on the US's lead they are completely free to follow their own or any other lead they like. Good luck with that I'd say.

For my own part, my nephrologist made no mention/complaint regarding the NKF or it's guidleline. They merely appeared to follow the guidelines of 2000 which recommends little intervention at stage 3. My renal dietician did mention waiting on the NKF guideline updates since 2016. Not so much complaining as answering my question on why the delay in getting very low protein + keto acid diets running in clinical practice.

The guidelines weren't the main issue in her view anyway: money, or the lack of it is. Who is going to pay for all these renal dieticians (and the training of same) so as to implement such diets. Certainly the struggling Irish health system isn't going to manage it. Funded to the hilt but grossly inefficient so as to spill lots of that money, there isn't a snowballs chance in Hell of practice changing anytime soon. The 2020 guideline will have cobwebs hanging from it I fear..

The NKF themselves recognise this as an obstacle: lack of dieticians and training of same.

The fact of the matter is that people come on here talking of doctors and nephrologists taking no action in the face of falling (or at times, plummeting) eGFR. There is something lacking somewhere when the science pointing to the benefits of very low protein + keto diets, published in 2011, 12, 14, 16, etc is published a year before the KDQOI guidelines by an ex financial services guy with CKD. This isn't the "fault" of the NKF per se: large systems tend to be slow moving. Indeed, the 2020 guidelines (on nutrition at least) announce that they are based on the best evidence as of 2017!

Is it justifiable to "complain" when information is available but the system is slow: first reporting on it and then acting on it? This is life or death after all. Put it this way: if the protagonists themselves had CKD we might see things move a darn sight more swiftly. But such is life.

(What's the story with the ad for "Meatless Monday" in your post? At this stage in proceedings (low and very low protein diets proposed as kidney preserving) you'd have thought the ad would simply exhort us to "Make Most Days Meatless!" )

Blackknight1989 profile image
Blackknight1989

My brother, not a hit at you or your doc…You make some valid points. However, I’m not as sure as you that it is an issue with the science as much as an issue with an understanding or perhaps caring enough about your patients to take proactive steps to get them care for CKD as soon as possible as opposed to whenever? Also, that you may want or need to provide that notification and care to the patient as a GP if CKD is stage 1-3.

NKF has worked for many years to establish specific criteria and guidelines for frontline physicians to be able to identify and manage CKD much sooner than occurring in the last two decades. Further, identifying folks who are at risk for CKD and performing 2 specific tests on those folks as their primary physician. So why isn’t that happening? Is it the science…I don’t think so. If I understand the science than surely the physicians understand better than I do.

From NIDDK.gov:

Currently, the key markers used include abnormal urine albumin levels and a persistent reduction in the estimated glomerular filtration rate (eGFR). Identification of the etiology may help guide management. Diabetes and hypertension are the leading causes of CKD in adults.

Also,

Screen people at risk for CKD, including those with

diabetes mellitus type 1 or type 2

hypertension

cardiovascular disease (CVD)

family history of kidney failure

Finally.

The two key markers for CKD are urine albumin and eGFR. To screen for CKD:

assess urine albumin excretion to diagnose and monitor kidney damage. Screen using a spot urine albumin-to-creatinine ratio.

calculate eGFR from stable serum creatinine levels to assess kidney function. Use the Modification of Diet in Renal Disease (MDRD) Study Equation or the Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI) equation.

CKD is generally diagnosed when there is evidence, for more than 3 months, of

kidney damage (usually urine albumin > 30 mg/g creatinine, but includes other clinical findings such as hematuria, congenital malformations, etc.) and/or

decreased kidney function (eGFR < 60 mL/min/1.73 m2).

Here is the link:

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

So straightforward right? Why do we continue to see and read stories here of folks who were never told they had a problem until they were stage…3b. Isn’t that your experience. Mine as well. I had high blood pressure from 17-29, a heat stroke and took NSAIDs like candy. I spent age 18-27 in the Army and they never told me about my BP, that I had a heat stroke (it was simply a heat injury) and the NSAIDs were given to me by the Army. Yet my kidneys failed and the ER physician who managed my care then first 2 weeks I was in the hospital never tested me for a creatinine or any type of kidney or liver reading blood tests. Granted it was 1996 but still was he just not taught what to do in med school? Was he ignorant or just didn’t care…who knows and a different time. Yet, why weren’t you informed or tested earlier? Why when there are clear guidelines for all docs are folks still coming to this site with a new diagnosis to them and they are in stage 3b. Hell, it is an app for your mobile phone now, the NKF guidelines and care management, that I have on my phone and iPad.

I added the picture of Meatless Monday to highlight the work that is being led by the NKF currently. They along with all the other agencies we normally discuss in the US are working their butt off to educate patients and doctors as quickly and completely as they can. Sure we have been discussing for months but those of us who use this site normally are so far ahead of the average CKD patient that our knowledge and commitment to not only managing but trying to arrest the CKD is not the norm. Did we not just discuss why primary care physician either don’t or won’t follow simple guidelines of testing at risk patients and then informing them if they find an issue. I’d be willing to bet that you had a heart check or an EKG prior to your kidney function tests. If not, I believe you and I are both on the old side of 50, then you had a colon cancer test prior to the kidney blood test. Why? Which one if untreated is more dangerous? That I don’t know because I am NOT a doc. Lol!

Anyway, the Meatless Monday is a product of the sweeping changes in diet recommendations made by the NKF following their study in 2018-2020 that we have discussed. From that test the formed the Council on Renal Nutrition which led the study on supplements another discussion we have had here in recent months. The NKF along with the other agencies I listed above are moving much quicker to get the information out and accessible to all CKD patients. Hopefully now a Google search by a newly diagnosed CKD sufferer for “can I still take my 30 supplements I was taking” will lead to a quick answer of no. Similarly and more importantly, hopefully if they search for “CKD stage 3 diet” they will find that information accurately and quickly and stop eating red meat for dinner every night as opposed to coming here and asking. I don’t know about you but it seems as if there are several more doctors giving advice here than there were when we started. Certainly more self proclaimed “experts.” That is not a specific criticism of anyone or any particular topic just a general impression I get when reading the threads. So Meatless Monday = NKF updating the information from studies that significantly reversed previous recommendations made by them on topics that can have a major impact on the majority of CKD patients and physicians where it is easily accessible.

Links:

NKF newly formed Council on Renal Nutrition

kidney.org/professionals/CR...

Article about the NKF clinical guidelines for physicians evaluation and management of CKD.

pubmed.ncbi.nlm.nih.gov/246...

Link for the two tests of kidney damage and kidney function as well as some info as to why eGFR may be unreliable.

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

Information on on creatinine standardization.

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

Additional link on the two tests and an example of what primary care physicians have access to when tackling a patient they will evaluate for CKD.

niddk.nih.gov/-/media/Files...

Page 4 has a really interesting section on the right side bottom.

Limitations of eGFR

• eGFR provides an estimate of kidney function.

• Current estimating equations have only an 80 to 90% chance

of being within +/-30% of the measured GFR.

• This uncertainty increases significantly for eGFRs above 60.

So the test is 80-90% accurate to within 30% of the actual eGFR. No wonder we are trying to move away from that test! Amazing!

nascar4433 profile image
nascar4433 in reply to Blackknight1989

Thank you for taking the time to add all the links, and for your insightful dialog. I saw a nephrologist 2 yrs ago who said Stage but said nothing else and to come back in a year "if needed". I changed PCP early 2020 and began a journey to actually get diagnosed and feel better (severe gastroparesis & dysphasia). He also kept an eye on labs and early summer sent me to a different nephrologist...thankfully! Stage 3b CKD, eGFR 34. Waiting on results of ultrasound. 3 mo. on low-potassium diet (was already on low-residue), Lokelma potassium binder, Furosemide. Handouts re potassium but no dietician yet. Possibly in Dec. + hematologist for "anemia due to chronic renal failure". Will check out the links and look into more plant-based diet. I rarely eat red meat but don't eat salad often either! Needing low-residue, it precludes nuts, seeds, skins, etc. Need to do more research and actually make some big dietary changes Now. I don't want dialysis nor a transplant down the road if at all possible (but then who does?!). Thanks again for your good info & dialog. (And yes, I'm on the old side of 50 too! 70 but still a kid in my head..lol).

Skeptix profile image
Skeptix

Talked to nephr & r.dietician today (5 months on 0.46g/kg dietary + 0.34g/kg Albutrix to arrive at 0.8g/kg)

1. Dietician wants me to go true vlpd+ keto per the research literature. My guess is that they are interested in this "live example" of the KDOQI 2020 guidelines in action and want to run with it to see how it pans out.

True sVLPD would see dietary protein trimmed to 0.43 (from 0.48) and keto added to total 0.6g/kg rather than 0.8g/kg. Doable and, of course, cheaper on keto spend!

2. I won't know until I do another 24 ambulatory but, based on home readings I've had a ca. 5 point drop on systolic attributable to diet. Looks like I'm at 120 systolic which is the target of the 2021 KDIGO guidelines. Have shifted taking my ACE to nighttime rather than morning for the apparent benefit that gives.

3. Proteinuria has gone from 650 pre diet to 600 to 450 over a couple of samples. A blip? We'll see in Jan @ next bloods

4. Urea pre diet was 13.5. Went down to 6.5 at 1st blood (3 months into diet) and up to 10 latest blood. I had been on camper van hols not long before bloods and couldn't stick to low protein / plant diet during it and took a week to get back in zone after hols. Next blood will, therefore, be interesting on urea. Hope it goes back down, especially with tighter protein intake. If it did go back down it would be a testimony to the ability to control uremia via diet.

5. Creatinine down 11 points from 208. Just drags my eGFR back to make me 3b instead 4. I'll take both the points and the slight psych boost. Again could be a blip.

6. Have to get a b12 shot since that trend is down and down again. Underlines the importance of a dietician who figures supplementation is too slow. Once boosted I ought be able to.maintain by supplementation.

Interesting aside: I've been logging everything on the Cronometer app, including Microtrix, the Albutrix accompanying multi vit. I noted that I wasn't making B12 grade, even with the multivit. I was only averaging maybe 80% of daily requirement. And sure enough the bloods show it up..

7. Cholesterol went from 6.6 to 5.2 in 3 months dieting to first blood. Will update latest lipid when I get full results but imagine it'll be lower again. Leave aside the question of whether higher cholesterol is as dangerous as often stated by the Statin-Pushers - the point is that diet certainly impacts numbers in no small way.

Small steps but largely in the direction I want to go in. Much better than their sliding backwards, for sure

Stavrosang profile image
Stavrosang

Nice! Good improvements in a lot of areas and further evidence that there’s a chance to steer the ship.

I am taking some time off kidney chat to re-focus a bit and give my attention to home life but I’ve seen some interesting discussions that I want to get into when I am ready to get back into it. Especially on the vitamin d, calcium, phosphorus and PTH levels. I also have more checks in January so hopefully these trends continue.

Great to see your making progress and also the campervan chat! I had a similar adventure this summer and it wasn’t always easy to stick to the diet plan.

Skeptix profile image
Skeptix in reply to Stavrosang

Indeed, it's not the kind of thing you can spend day after day on - it tends to fray the brain cells. Work'll be demanding of me at some point (its been unusually quiet) and that will be that for all things kidney. I suppose enough to be getting on with with diet and just drilling into applying what I know to day to day life. Best of luck yourself and touch base in Jan with result - hopefully good 'uns.

Camper Van Abstract: Glad I did it

Camper Van Conclusion: Won't do it again*

*We booked a posh hotel middle of the holiday as a just-in-case-we-need-it. Getting back into the camper van the morning after, after plush beds, baths filled to the brim and fine dining was almost too much. The smell of the chemical toilet as we opened the door ...

Stavrosang profile image
Stavrosang

Haha! I’ve got a converted VW transporter with no toilet and it’s had a few good trips this summer. I also made sure there was a few posh hotels mixed in to keep the overall experience a good one and everyone happy. Don’t want to turn the holiday into a hardship.

I am starting to research a bit on vitamin D, PTH, calcium and phosphorus levels as some of my numbers are out of the recommended range and going to wrong way. Will have a think how to word a post to get some good discussions going.

Researching and learning how to try and improve our numbers is a high priority but we need to find a balance as life goes on and we need to be present.

I am also going to try and get a second opinion on my numbers and changes hopefully from a Neph on a similar wavelength that is open to discuss diet and lifestyle as a key enabler for improvements.

Keep the great discussions going

Skeptix profile image
Skeptix in reply to Stavrosang

Half way through the holiday I noticed that the lads around the campsite, who were doing the morning "shit-detail", were wheeling the chemical toilet cassettes over to the emptying station as one would a cabin-sized suitcase.

I'd been carrying my van's (remarkably heavy) cassette by hugging it to my chest, contents swilling around just below my nose, trying to avoid suspiciously wet areas. I legged it outside to check and sure enough, there were wheels on my cassette and the lock handle actually telescopes out. Oops!

Experienced campers must have been rolling around laughing looking at me. I'm sure videos will have been shared in camping circles.

Just had a refreshing 3 way discussion with my neff and RD. They are still cautious but happy to thread the supplemented, very low protein diet. They accept that I'm digging down and are happy to tack on blood tests that mightn't be part of the standard menu. I think that it's rare they get a patient as interested and they themselves are keen to see how this latest KDOQI based intervention pans out. There'll be similar folk out your way too, just have to find them.

My neff made the point about not making life too hard in order to stave off the evil day. She made the valid point that quality if life was important as kidney preservation. You would have to wonder: a long drawn out decline and the effects it has on your body (e.g. heart) vs a more rapid decline into dialysis/transplant which might spare your bodies infrastructure.?

Stavrosang profile image
Stavrosang in reply to Skeptix

It’s a good point about enjoying life. I’ve got to a point where I enjoy the diet I am following and it’s mostly compliant with Lee Hulls guidance. Possibly a few too many take away vegetarian meals but I’ll see how that effects things at the next check in

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