High creatinine: My creatinine has been... - Kidney Disease

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High creatinine

abaker profile image
29 Replies

My creatinine has been rather stable at 1.6 for a number of years. But now it has gone up to 1.8. Can anybody suggest ways to bring it down?

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abaker profile image
abaker
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29 Replies
WinJ3 profile image
WinJ3

If you are serious about saving your Kidneys. Read this book by Lee Hull: Stopping Kidney Disease.

Win

RoxanneKidney profile image
RoxanneKidney in reply to WinJ3

I need to read that book. It comes up a lot.

Aidancree profile image
Aidancree in reply to WinJ3

Thanks for this recommendation WinJ3. Aiden

orangecity41 profile image
orangecity41NKF Ambassador

You do not say what level of Chronic Kidney Disease you are at nor what your eGFR level is. I would suggest before you entered into any kind of diet to contact your Doctor. Here is a link to help you understand the eGFr and stages. kidney.org/atoz/content/gfr

Skeptix profile image
Skeptix

You can calculate your eGFR on the NKF website.

kidney.org/professionals/kd...

Have you been diagnosed with CKD? Like, you could be keen on weightlifting which would raise your creatinine?

If it turns out you have CKD then, after commiserations, I'd second your reading Lee Hull's book. It's a great first entry point in to the world of kidney disease - and will get you into battle mode, whatever about the path you take thereafter.

Bond-007 profile image
Bond-007

I was inspired by Hull’s book but vegetarian diets do require some B12 supplementation & additional iron if you are anemic & if seriously anemic & based on comorbid conditions get iv iron or high dose oral iron. Get a good experienced internal medicine Dr - not a new one or a burned out older doc whose ready to retire after his associates leave their “difficult” cases to him. Make sure u r not dehydrated which can raise creatinine & check your BUN.

Skeptix profile image
Skeptix in reply to Bond-007

Yeah, a few months on a very low protein + keto acid diet (the Hull-diet, more or less) and my urea and cholesterol fell dramatically (good news). But I also noticed a big drop in iron. Had been around the 18 mark consistantly o'er the years and suddenly down to 12.5 or so since the diet.

Funnily, his multivitamin, which is designed to pair with the keto acid low protein diet, doesn't contain iron but does B12. Wonder why that is?

Bond-007 profile image
Bond-007

Probably because the amount of iron absorbed by mouth is so low as to be useless unless it is very high / 100-300mg & thus is better managed with a separate treatment, ideally IV iron. Ask your pcp about high dose iron or iv iron & monitor Hg.

Skeptix profile image
Skeptix in reply to Bond-007

Am hoping to avoid needles (and supplements) and adjust diet. I take it that its my dropping meat consumption (and moving to less easily absorbed plant iron) that has caused the serum iron drop.

As opposed to anything more sinister.

I haven't particularly focused on iron-containing plant based food so am probably doubly hit: no meat then little by way of iron contains food.

Bond-007 profile image
Bond-007 in reply to Skeptix

Exactly - iron+b12+ whatever else goes into making Hg, such as erythropoietin which the kidneys excrete are things to watch. Monitor iron panels & Hg, & make sure there’s no upper GI bleeding- eg black stool (melena) causing a rapid bleed. Never ignore anemia- it exhausts you & can kill. Blood is the river of life for every organ - especially heart & brain. Get a dr who knows that & forget the rest.

Skeptix profile image
Skeptix in reply to Bond-007

If you know of a limitless stream of doctors who know all they ought to know - such that I can tiptoe through the tulips from one to the next then let me know.

:)

But I have got an interested renal dietician and I'm due a call with her now that my first post-very low protein + keto acid diet results are in. Some good stuff in there but I do notice iron low ... and now that you've pointed me where to look, I see HGB getting lower. Had been 14-16g/dL going back years (13.8-17.2 the range) but now 13.3 this last blood.

Time to start sucking spinach methinks..

QuilterSC profile image
QuilterSC in reply to Skeptix

Hi, I’m CKD stage 4, my hemoglobin is at13.3 which is the normal range and RBc’s in normal range also but I was still exhausted. I’ve been trying to eat whole food diet. It was my folate that had dropped, used to make red blood cells, and causes neural tube defects in babies if pregnant woman don’t get enough folic acid for several months prior and during pregnancy. So I’m on a supplement now. Green veggies, broccoli, spinach, etc are friends.

Sophiebun11 profile image
Sophiebun11 in reply to Skeptix

Hi, I've been a vegan for over 30 yrs. I don't take supplements. I get all my Iron and vitamins from plant sources like lentils, beans, quinoa, tofu, nuts, seeds and dark leafy veggies and no meat at all or dairy. I get B12 from adding nutritional yeast which adds a slightly nutty/cheesy taste to food. Most people love it on popcorn it tastes like parmesan, or on bread. If you look up vegan sources of Iron you'll get long lists. I wasn't sure if I could post links to outside places. A Renal Dietician can help with that and give you educational material. My dietician emails me recipes and lots of helpful info.

Skeptix profile image
Skeptix in reply to Sophiebun11

Many thanks! I've got to keep an eye on protein intake given I'm on a very low protein diet but there's certainly hope in there. I'm guilty of ignoring dark leafy veg as there isn't much.of it I like. Then again I ain't looked into receipts that might be tasty.

Good tip with the nutritional yeast - I got some for a recipe ('cheese' component in a sauce) so I'll get a-sprinkling. I'm taking a multivitamin compiled for the diet I'm on. That aims to sort B12. But I have noted a drop off the B12 in the first bloods taken since starting this diet. B12 was steady for years so it could well be the new diet.

Bond-007 profile image
Bond-007

Of course but when you need blood - you can’t delay. Get those red blood cells up to normal & you won’t be tired & out of breath. Your heart, lungs, brain & kidneys will thank you. An infusion of iron takes 30 mins. Ask your Dr if he thinks your Hg is low enough & iron low enough to require IV infusion. Don’t neglect anemia.

Skeptix profile image
Skeptix in reply to Bond-007

Gotcha, thanks. Will chat to the r.d. about it.

whats profile image
whats

From my own experience and posts here, it looks like a low protein diet lowers creatinine. But research shows that actual long time survival is better if you eat at least the minimum RDA of protein. I had creatinine of 1.6 slowly edging up and it got lower on low protein, but I have other health problems now. The best long term survival comes from very restricted protein plus non-nitrogen (also called keto acid or protein analogue) supplements, Lee Hull's Albutrix looks like the most honest and the best quality, but its about $170 a month. Cheaper than dialysis I tell myself, though I only got one bottle months ago and take it sporadically, so I'm not really following the very low protein protocol. In Italy and probably most countries with public health care, Keto acids are much cheaper, probably free.

oceansplash profile image
oceansplash in reply to whats

I thought I read in Lee Hulls book why it's not to do just keto acids. Can't remember detail now.

whats profile image
whats in reply to oceansplash

Yeah, I'm not sure what you mean. I looked through his book again- there's a lot I forgot- like how important serum albumin is, (higher is better) and what a good mortality predictor it is, which might be why low protein diets without supplementation are bad, and why I started having heart problems on my low protein diet that are better since I started eating more protein. Also this: "Soy protein containing isoflavones(?) intake significantly decreased serum creatinine, serum phosphorous, CRP and proteinuria in predialysis patients." Its a good book. Also this fact, the US is 66th among nations in kidney disease treatment.

whats profile image
whats

Its not just Lee Hull, there's lots of research on low protein diets. The diet that is most effective at stopping kidney decline is very low protein diet. That is, < .3 to .4 G/Kg body weight, or about 25-30 G protein/day for an average sized person, which is about what you get in a vegetable based diet with a measured amount of whole grains or legumes or nuts. Then you bring up your total protein intake with at least 30G of keto-acids, like what's in a "serving" of Lee Hull's product Albutrix. There's another Keto acid product, Ketorena, I think, that seems to be about half the price of Albutrix, but if you look at the fine print there's only about 1/6 of the keto-acids in a "serving" as in Albutrix, so it seens like a worse deal. I emailed them trying to get a more information about this serving size but they wouldn't give a straight answer. You might be thinking of Lee Hull's advice, verified by research, that you really have to keep dietary protein at or below 30G or the diet won't be effective. I didn't do it because of the expense, and because my dr. said I didn't need to, but if or when my creatine starts going up I think I'll try it. Also he provides a month's supply of vitamins with the Albutrix.

Skeptix profile image
Skeptix in reply to whats

I'm meant to do 25gr diet / 25 gr keto (if following Lee to the letter) but average 30/20. That's 4 pills a day which means a month and a half from a bottle of pills (180).

I looked at the ketorena (wanting a cheaper solution) but

a) looks to be the same price as Albutrix or thereabouts

b) is a one size fits all. Albutrix is formulated for the stage you're at.

Lee claims Albutrux the lowest nitrogen keto, which, if you're needing to lower your urea/BUN would make sense. That said, lowest nitrogen need only be fractionally lower than the rest to render the claim a marketing claim.

Then again, Lee is evangelical so I'd tend to give him the benefit of any doubt!

You'd hope that the price would start to head down as competition takes hold. Must check out whether they can be got on public health. My renal dietician was talking about prescription low protein food - I thought you could only get pharma products on public health. In Ireland, you only pay max €100 a month for your medications. I've already got ACE so it'd help if Albutrix could be added to the bill.

whats profile image
whats in reply to Skeptix

I wondered about competitive pricing too, and decided the market is probably too small and the cost of making it too high, also its not patentable and would require self-discipline from customers, who might then lie about their diet and sue over bad outcomes. Though makers could probably get liability waivers from customers. Also customers would have to give up pretty much all processed (read profit-making) foods. Also I thought most European health plans covered it- sorry Ireland doesn't. American doctors under-emphasize diet other than Potassium and Sodium, also weight, who knows why, its all over the journals, though few researchers seem to be American.

Skeptix profile image
Skeptix in reply to whats

Small market is probably the guts of the pricing issue. That said, the dam has been cracked given the NKF guidelines so this thing is likely to take off in time.

Lee is actually patenting it at the moment, I was looking at the application to see what was in the product. I guess you can't really protect although if you've got something unique like "lowest nitrogen" and that can't be circumvented by another formulation then you might be quids in.

Theist benefit will be by being in early and building up the reputation with the CKD punters.

Agreed that it might always be marginal re: punter take up. Everything I read regarding diet (even low protein) talks about the problem of conformance. Its a bit like credit cards: folk thinking the can spend beyond their means and still square the circle.

Still though, there'll be a few bucks in it in time.

whats profile image
whats in reply to Skeptix

Great summation! Wonder if its expensive because the stuff is just expensive to make or if its that a small customer base has to cover all the business expenses. In my case, the healthy diet is addictive, but kids who still drool over family desserts??

whats profile image
whats in reply to whats

It looked to me like Ketorena only had 5mg ketacid per "serving" or maybe per pill. I started re-reading the Lee Hull book to answer a question here, and learned a lot, like the importance of keeping your serum albumen up. I had a little AFib after about 3 months on VLPD and decided to take some ketoacid, like 4 or 5 of them a day, and the AFib went away. (I couln't get even 30G protein on a vegan diet because I have to eat under 1000 Kcal to lose weight) . I also read the Uremia chapter and I can see now why you were worried about it. I haven't seen a copy of my latest labs, but I think the only abnormality was creatinine. I have labs all the time for Lupus, so my doctor looked at my huge set of past labs and said that my creatinine started falling when I got high contrast dye for a scan a few years ago. (Lupus didn't cause my CKD). So anybody reading this, I guess its too late to be careful, but maybe warn people you care about without CKD to take it seriously. It must be a rare reaction to the dye. So anyway, Skeptix, what you're doing sounds reasonable to me. I'd make sure your serum albumen gets checked. I'm now a believer that it needs to be at least normal.

Skeptix profile image
Skeptix in reply to whats

This 1000 kcal diet for weight loss. I presume someone 'prescribed' it in which case I presume some thought was given as to consequences like malnutrition!!

I can't recall my ketorena investigation but do recall concluding that it was the same price as Albutrix (more or less) for the same amount of protein-equivalent provided. The advantage of Albutrix lay in it being low nitrogen / low calcium (if you were convinced of those benefits) and the fact that the multivitamin appeared better balanced to the vlpd plant diet.

Question: I'm fairly small (64kg) and have a budget of 2200kcal a day. 1000 seems pretty drastic for weight loss. No?

whats profile image
whats in reply to Skeptix

It seems I've put my metabolism into food scarcity mode where it won't let go of weight. Thanks a lot, ancient genes.

Skeptix profile image
Skeptix in reply to whats

Not interrogating or disagreeing.

Just curious from a mechanical engineers perspective (thermodynamics, energy, force,mass and all that). Its a question I've been meaning to ask since encountering the idea of not being able to lose weight

A person can't operate a body without energy full stop. Energy is burnt keeping you warm, operating the computer that is your brain, moving around. They don't have to jog or swim - just living and breathing will consume energy. So far so good.

Let's suppose there is a certain minimum per day used by a living person. No big exercise, just living, breathing, thinking, etc.

If they are putting less energy into their body than is being consumed with all these bodily processes then they cannot but lose weight.

Now that weight loss might not be from where they might want to lose it (fat around their belly, for instance) - it might result in muscle loss whilst fat remains. But weight loss there must be. Weight is energy.

Put it this (extreme) way. What would happen if they stopped eating altogether .. and kept thinking, moving, breathing. No energy in at all (except water which has no energy)

They would have to lose weight.

whats profile image
whats in reply to Skeptix

Some people's metabolism just likes to turn itself way down, to the point where the level of food intake for weight loss is just too low for the nutrients they need for health. As I write this, I think of people in poor countries who can't get enough food at all, how they get through a day. Fasting seems to be good for health, measured in days though, not years. And maybe more for people who were over-nourished, or unhealthily nourished before fasting? A dip in icy cold water turns your metabolism up, but I personally can't do that on purpose. Except a cold creek on a really hot day. I also strongly prefer some tasty food every day.

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