Does anyone take L-Carnitine. I am only ask... - Kidney Disease

Kidney Disease

11,168 members4,820 posts

Does anyone take L-Carnitine. I am only asking if anyone is taking this, I am not advocating for the use of it.

Bassetmommer profile image
BassetmommerNKF Ambassador
20 Replies

One of the issues with having a lower protein diet is carnitine deficiency. It causes muscle wasting. My latest labs show a very low carnitine level and one doctor has suggested that I try the supplement with l-carnitine. I have found mixed information out there about it. I know that all supplements should be vetted by your doctors.

My question is : Does anyone with lower kidney function ( stage 3b or 4) take this supplement? if so how much and how often and do you think it has helped?

Written by
Bassetmommer profile image
Bassetmommer
NKF Ambassador
To view profiles and participate in discussions please or .
Read more about...
20 Replies
Michael__S profile image
Michael__S

I am following. I'm only at stage 3a and things are likely different for me, I may or may not give it a try in the future, supposing that my medical team approves it. I'll refrain from further comments for this reason and leave room for other to shares their experiences.

It look like it could be worth a shot if it's supported by your medical team. The L-Carnitine fact sheet from NIH (ods.od.nih.gov/factsheets/C... might give you some insight though its fat-burning abilities are not really defined. This meta-analysis (ncbi.nlm.nih.gov/pmc/articl... appear a bit inconclusive on this, it might put you in a better situation to burn fat regardless. I would personally take the recommendation regarding which type of l-carnitine to take from Healthline with a grain of salt and refer to your doctor instead (healthline.com/nutrition/l-....

I have a big distrust in the dietary supplements industry as it is poorly regulated, unless you have it provided by your medical team (it is a thing where I live) then I wouldn't buy it from the shelves unless it is certified NSF (nsf.org/knowledge-library/w... or tested by a third party lab such as labdoor (labdoor.com/). If I buy it online I'd buy it directly from the manufacturer and pay the extra shipping cost as a peace of mind. In the past I've seen massive difference in term of efficacy by paying the premium for a reliable source.

Other things to consider beside the dose is the timing (e.g. morning vs. pre-workout vs. post- workout vs. spread around meals or else), interaction with other food if any and the type of exercise that you are doing. Not all studies necessarily agree on this and I've found a difference in the past with other supplements.

I found that studies are generally doing a poor job at testing the different exercise regimen out there. Right now I am using Omega-3 which appear to have some fat-burning benefits and it appear to be tightly related to the type of exercise I am doing. Moving from steady walking on an incline for 45min to 1h30 (to burn more calories) 4-6 times a week to a low to medium intensity interval walking program (intensity based on heart rate) on a steeper incline for only 20 minutes 4 times a week made me burn fat all of the sudden. I also lost more muscle than I expected but I think it was related to my diet. While I thought that it was mostly caused by my diet and Omega-3 supplementation I took 2 weeks off from the treadmill and went for frequent longer walk/hike outside. Interestingly enough I didn't loose any weight at all despite being in caloric deficit.

I am not taking hard conclusion out of this but it appear that for me burning that fat is more linked to a combination of factors than a single element such as a supplement X. I expect it to change over time. Best of luck.

Skeptix profile image
Skeptix

How low is low protein? 0.6g/kg or something.

Have you looked at ketos to top up - in the sense of supplementing with a protein substitute so that whatever is needed downstream of protein is provided for. Rather than work on one of the consequences of lack of protein.

Michael__S profile image
Michael__S in reply to Skeptix

What is ketos? (edit: Do you mean keto acid analogue or something else?)

Skeptix profile image
Skeptix in reply to Michael__S

yeah, KAA. I'm on them having read of a number of trials in which they were "prescribed" as a solution to the lack of protein when put on a very low protein diet (0.3-0.4g/kg).

orangecity41 profile image
orangecity41NKF Ambassador

I have noticed muscle wasting. It is something to discuss with my Doctor, but due to age it might be considered normal. I am also on low protein diet.

Skeptix profile image
Skeptix in reply to orangecity41

How low is "low protein" and are you supplementing in any way?

orangecity41 profile image
orangecity41NKF Ambassador in reply to Skeptix

My CKD diet limits my protein intake to 65 grams per day. I take no protein supplement.

Skeptix profile image
Skeptix in reply to orangecity41

If its not too prying, what g/kg bodyweight does that equate to?

Like, I'd be in clover with 65gr a day (0.8g/kg puts me at 50 gr per day given bodyweight of 64kg).

orangecity41 profile image
orangecity41NKF Ambassador in reply to Skeptix

My body weight is 140 lbs, and am 5ft 5, and 80 years young..

Skeptix profile image
Skeptix in reply to orangecity41

Hmm? You're just on 64kg - same weight as me. Your 65gr protein is a tad over 1 g/kg. Yet 0.8gr/kg is considered normal adult intake and low protein starts at 0.6g/kg.

What gives ??

orangecity41 profile image
orangecity41NKF Ambassador in reply to Skeptix

I do not know, except it is working for me.

Bassetmommer profile image
BassetmommerNKF Ambassador

The carnitine deficiency is very common in low protein diets. I am not eating meat, chicken or fish or dairy... The trick is to substitute those proteins for plant based protein like legumes. So that's what I did . AND.... of course, my potassium blew up. So now I have eliminated that source of protein as well. I am waiting for a counsel with my dietician as to what to do and I am also hesitant to take supplements but.... there is a lot of information out there on the benefits. So I am investigating. Just so for reference. .08/kg is normal protein in take for adults. 06/ is low but I am even lower than that. I am at .03.....

Skeptix profile image
Skeptix in reply to Bassetmommer

From what I've read, 0.6 seems sustainable but 0.3 not, unless you supplement. (at least, the trials into low protein diets appear to invariably specify supplementation with ketoacid at 0.3-0.4. It seems ketoacid would be a solution for you since there's no potassium involved. I'm taking a steer from the various trials into low protein / current KDQOI guidelines that ketos are a kosher* option

I'm taking Lee Hulls version, it being a low calcium version (which is arguably wise). But as a category of supplement, they don't appear to be cheap..

*not in the literal sense of the word :)

Bassetmommer profile image
BassetmommerNKF Ambassador

Lee Hull's supplement is all vitamins if what I saw it correct Albutrix or something? It was not amino acid unless I was looking at the wrong product.

Skeptix profile image
Skeptix in reply to Bassetmommer

Albutrix = keto analogues of amino acids. Microtrix = the CKD targeted multivitamin.

I haven't really checked out price efficiency yet - as in, where to get ketos more cheaply than the €180 a month its costing me. From what I've read in the literature, ketoacids are accepted as "costly" but cheap when compared to the cost of dialysis!

Anyway:

Albutrix: 180 pills/€180 = a $ a pill each giving you 5gr equivalent protein. 1$ per 5gr thus

You get a months supply of the multivitamin thrown in "free" alongside the Albutrix. Lee promotes Albutrix as the lowest calcium containing keto (thus heart friendly, goes the argument). The "carrier" is magnesium instead so I suppose you've got to be happy that you can handle magnesium.

From the bottle: Calcium 30mg per pill / Magnesium 30mg per pill / Nitrogen 32mg per pill.

Ketorena: has 90 scoops of powder/$99 (when you're bulk purchasing, which you will be) each giving you 5.1g equivalent protein. About the same price as Albutrix so..

Ketosteril appears in the literature a lot ( as in the ketoacid used in very low protein diet trials). Although a German company apparently, the ketoacid side of things appears to come from their Indian operation. I can only see ads priced in rupees. Colour me cynical, and I know supplements is a problematic area, but I ain't buying something from an Indian website.

My daily budget is 50 gr split 25 diet/ 25 keto. That's a 0.8g/kg target. I frequently don't make the 25gr diet, tending to hit late 20's. And so 4 pills (or 4 $) a day to supplement. I suppose I could cut it to 3 pills and trim back from a 0.8g/kg target and save myself a few $. But first see if it works come next bloods!

My_Kidneys profile image
My_Kidneys

I am borderline Stage 3-4. I have started a low protein diet. I take a multivitamin ProRenal with Vitamin D and Omega-3 and Ketorena an amino acid replacement for kidney patients. ProRenal was Created by Nephrologists and is endorsed by Davita, National Kidney Foundation, and Frensenius Medical Care. Ketorena was Developed by a Board Certified Nephrologists and endorsed by the National Kidney Foundation. I keep a watch of my muscle mass by having Bioelectrical Impedance Analysis (BIA) body composition measurements done each year. Here are the links to ProRenal and Ketorena. I am not associated with nor do I receive any monetary gain from ProRenal or Ketorena.

myprorenal.com

ketorena.com/Articles.asp?I...

Skeptix profile image
Skeptix in reply to My_Kidneys

Hi there,

The world would truly have turned were Fresenius Medical Care ( a company involved in the dialysis business) to go on to champion low protein diet + ketacidanalogues (which are purported to delay the need for dialysis) :)

But perhaps they do: a company called Fresenius-Kabi are the makers of Ketosteril, a ketoacid commonly referred to in the literature surrounding very low protein trials. Wonder if there's a tie in there?

-

What kind of low protein diet are you on? Is it doctor-suggested? I would have figured very low, in order to warrant keto supplements. And would guess it's plant-based as well, given the difficulty in avoiding blowing your protein budget if eating any meat/dairy?

I'm doing a 0.8g/kg split 50/50 between plant based/keto supplement. I wouldn't be able to do calcium-based Ketorena at that level (I'd blow my calcium budget) but if going down to a 0.6g/kg then perhaps I could.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Skeptix

not sure what your question is. I am doing plant based. NO meat, chicken, fish, eggs, dairy except some lo fat cheese once in awhile and even no creamer anymore. Trying Almond creamer. NO legumes anymore because of the potassium and I have to watch even the PB foods like broccoli which actually has a lot of protein in it too. No nuts because of digestive issues.

Skeptix profile image
Skeptix in reply to Bassetmommer

I was asking My Kidneys re: his diet :)

(I asked because I recalled ProRenal's vit B12 being too low if you're on a very low protein plant-based diet. I'm vlpd and I just about make my RDA of B12 taking Hull's multivitamin which has 90% of daily B12! Whereas I recalled ProRenal as providing just 40% of daily B12 requirement. There ain't no way I know of to get B12 on board via plants whilst keeping to a low protein budget. Protein, like salt, is in bloody everything!)

But I'm with you on the pain in the butt aspect of plant-based. It's bad enough, only to find out you can blow your protein budget in a heartbeat even with plant based. I just chucked out a fridge full of Alpro non dairy yogurts when I realised how they were punching holes in my protein budget...

But 0.3/kg without a keto supplement? I've simply not read anything in the literature where that was done. It always seems to be supplement with keto?? I dug up Hull's patent application for Albutrix and wonder is he talking of the problem you're experiencing?

"A low nitrogen diet or low protein diet may reduce nitrogen waste products at the expense of protein nutrition, wherein accelerated disease progression and muscle wasting can occur. In this situation, uremia is lessened, but at the expense of long-term health. Low protein diets without supplementation are not safe for any patients as albumin and Fetuin A levels decrease even further. High dietary protein diets are also not safe due the contributions to inflammation, oxidative stress, uremia and acidosis to name a few."

freepatentsonline.com/y2020...

TaffyTwoshoes27 profile image
TaffyTwoshoes27

My Neph suggested L-Carnitine (there are two kinds). My bottle says “L-Carnitine Tartrate” on the back Supplement Facts. It says 2 tablets = a serving. A “serving” is 1000 mg. I only take 1 capsule (large, white) per day. I have been on PD since 2016. I told Neph I didn’t have as much energy or muscular strength as before CKD4. He suggested L-Carnitine.

I get mine from Amazon. The manufacturer is BRI Nutrition. The bottle has 180 capsules which, if taken 2/day, will last 90 days.

You can look up price on Amazon.

I think it has helped a little. No real BURST of energy and strength. My current doctors and Transplant Hospital know I take it and have not said anything negative.

Hope this helps.

You may also like...

Does anyone here take an NSAID or Cox 2 Inhibitor?

15 mg of meloxicam daily. I am Stage 3a (newly diagnosed) and my doctor said it is OK to take. I...

Am I not taking my Stage 4 CKD seriously enough?

charts for prognosis based on age and CKD Stage. For Stage 4, over age 55 or 60, they say prognosis...

Kidneys and Arthritis pain

HI, my kidneys have been known to be very sensitive to chemicals. We don’t know why but there has...

Question about supplements

diagnosed in 2020 with polycystic kidney disease stage 3. My GFR has been declining since then....

Pain on the left side

for over 2 months now and have been going from one doctor to another and nobady knows what is this...