I just got my first crappy kidney functioning tests, what should I do?

Type 1 and LADA
1

This came from out of nowhere. I had no idea there was an issue, but now that I got todays results, I look back at the last couple of GFRs and there is a definite pattern. (I will say, though, that I have not yet talked to my endo, I see him on monday, so this is just my interpretation of these tests.

I can only see a couple of years worth of tests online, so this is what I've got:

9/29/10 84
10/15/12 65
2/27/13 58

I'm 43 years old and found a chart that said people my age have an average of 99 for this test. Anything below 60 is considered chronic kidney disease and anyone with a GFR below 30 should be seeing a nephrologist.

I am feeling more worried about the pattern than the actual 58. I think if I saw that in isolation, I might think, eh, I'm pretty close to 60. But it really looks like those numbers are going in the wrong direction pretty quickly. I feel like I wish that someone had pointed out that they weren't ideal a while ago. Crap. Crap. Crap.

Does anyone know if I can turn this around?

Currently I eat high fat/moderate protein/very low carb. My a1c this time was not great -- 7.3 -- but I was so surprised because I test often, usually 6 or 8 times a day, at least, and my numbers have actually looked pretty good to me, with almost no lows at all (like I think I had one 68 in the last month and nothing else as low or lower) and not a lot of spikes. It used to be that I'd see 400 here and there, but I think the highest blood sugar I've seen in the last 2 months was like 215.

Do I need to quit coffee? What is the current wisdom on salt? Do I need to start relying more on non-meat proteins?

Plus, my lipid panel turned out terrible (for me, I don't think it's off the charts really, but mine's always been good). My HDL went from 60 to 43 and triglycerides from 61 to 87. WTF??? I thought I could count on my good HDL. :( LDL not so great, either, 133, but I was expecting that given my diet, and not worried about that one.

Sorry so long... I feel like I really need to turn this around bc I cannot handle a diagnosis of "chronic kidney disease." I think it is my worst diabetic fear.

2

Couple of things,

The GFR reported is just an estimate based on your serum creatinine. As serum creatinine levels rise, GFR falls, ostensibly because your kindeys are losing the ability to clear creatinine from your blood. It's actually dificult to measure GFR without some pretty sophisticated applications. There are any number of limitations to estimating GFR using serum creatinine levels though.

So, take a look at your serum creatinine levels over the years and see if there is a correlation. Remember, GFR is just an estimate though and abnormally high serum creatinine levels will be flagged as such.

What you really want to look for to determine kidney damage is protein in the urine. The first inidcator will a high level of microalbumin in your spot urine test that you should be having done with each set of labs. If your microalbumin levels are not flagged as abnormal, you are fine. They will not even diagnose DKD without 3 consecutive high microalbumin levels in the urine.

3

I don't have any advice for you but I'm really sorry that you have received this news. It's one of my greatest fears too. I am right now struggling with major eye complications that have me preoccupied to the point where I can really think of anything else. I will say a prayer for you.

4

2.5 years ago I suffered kidney failure, partly due to db but mostly due to complications from ovarian cancer surgery - my heart and lungs, in addition to the kidneys, were shutting down. (I was not expected to live.) I was on dialysis for 14 months, but a little over a year ago my kidney function had improved and I got off.
There are so very many kidney tests and the entire big picture has to be looked at and interpreted. You cannot go by just one.
Talk to the endo about this. Be sure your questions are answered. See if you need a referral to a nephrologist. Have you done a 24 hour urine collection? Or a creatinine clearance test (where both blood and urine are evaluated at the same time).
My nephro says that for me right now the most important thing is blood pressure control. I monitor it at home each day, put it on a spread sheet and take it with to visits. He loves it. Also do whatever you can to maintain vascular health - if your lipid profile is whacked, then ty some dietary changes and possible medication.
Do NOT let fear destroy your sanity. Get all the facts and then proceed accordingly. Please let us know how this turns out.

5

From experience I can tell you to work on your a1cs. High bs is what damages the kidneys. I have been seeing a Nephrologist for years and although my kidney disease has progressed it has done it slowly Work on eating foods that don't have lots of Potasium. You can look online to see what foods to stay away from or to eat very little of. I hope your Endo will refer you to a Nephrologist which will be very helpful to you. As someone said above first sign of problems is protein in the urine.

6

My serum creatinine levels have gone up, but they are now at 1.1, which I gather is not "high". (Maybe high normal, though? I got that impression from a thread on another diabetes forum.) My microalbumin results in october were totally fine, I believe it was a ratio of 4 where anything under 30 was considered normal. The lab actually forgot to tell me they needed urine when I went the other day and I'm going to leave a urine on monday. Ya know, maybe I'll stop by there this afternoon, and hopefully it'll be back before monday and I can have that info when I talk to the endo.

I'm wondering if the GFR number is worse than it appears. lol I am rolling my eyes at myself for having these thoughts, especially when I think what you're telling me is that I shouldn't put too much stock in the number and I'm putting extra stock in it. But I am only 5'0" and I'm afraid that the estimation would fit a medium sized muscle-y person but overestimate how much creatinine I should be producing, kwim?

7

I'm so sorry, Cinder. I am so preoccupied and not able to think of anything else today. I was like this for a good long time after my original diabetes dx. I mean, for months being completely obsessed with it and pretty darned depressed. I don't tend toward that sort of behavior, never been that way about anything else, I don't think. But that was such a gloomy period and I do not want to be that way again.

Ya know I had an eye scare just this past fall. I was sitting in a cafe and all of the sudden I realized that I had multiple floaters in my vision that weren't going away and had actually been there for a while already (maybe weeks). I would see them when I got in the shower bc of the light plain tile wall which made them pop. But I had been pushing it out of my consciousness. Anyhow, I was TERRIFIED and certain that it was very bad news and it took about six weeks to get into my opthal and it turned out that it wasn't diabetes related and just a normal age thing. But I actually think that having gone through that experience has braced me a little bit for this one, oddly enough. Well, it doesn't feel easy but I actually felt much more scared sitting there in that cafe than I feel now and now I have full fledged lab tests to support my fears.

BTW, I love your avatar. I sew and knit like a madwoman.

I really hope you get some good news about your eyes!

8

I cannot imagine going through all that, Kathy. I didn't know that it was even possible to regain functioning after having been on dialysis for some time like that.

Thank goodness my blood pressure has been okay so far. Its rough bc I have some terrible white coat syndrome and I know that I am going to be freaking out before my appt on monday. I have not been exercising, but I have been planning to. I know that sounds lame... but I just changed my diet a lot a couple of months ago and I wanted to not add in exercise until after this blood test (didn't want to change too many things so I didn't know what was affecting me). I actually bought myself a pair of good walking shoes the day before yesterday and was planning on starting walking daily as of tomorrow.

I think "get the facts and proceed accordingly" is great advice and I'm going to try very hard to follow it. I am freaking out right now, but I think I'm going to try to limit myself to today. I think I might need a few hours to get some of the toxic thoughts and energy out of my system.

9

Yes! I am thinking I need to make my a1c a serious priority. It's not like I was ignoring my b/s, but I have had periods in my life where all of my a1cs have been under about a 6.2 for a couple of years at a time. I also have had some times of terrible b/s control. I am normally very all or nothing and recently I've actually been trying to be "reasonable," which may have been altogether wrong. Gah! Like, back when I was "perfect" I would have thought that a b/s of 140 a couple of hours after eating was just completely unacceptable, whereas lately, most of b/s test results have been in the 100-160 range and I've felt pretty fine about that and wouldn't do a correction anywhere under about 140.

I have a feeling that I am eating a pretty low amount of potassium (other people doing nutritional ketosis are always talking about supping with potassium and I haven't, thank goodness), but I will look up the list of foods to watch out for.

10

Your creatinine, while at the upper end is really not out of the reference range and the eGFR is marginally over the limit. And remember, eGFR is estimated from creatinine. There are other reasons your creatinine could be elevated, a high protein diet, exercising before the test or being sick in a way that causes catabolism. You have been diligent about your care. I would check with a nephrologist before leaping to the conclusion that you have kidney failure.

11

1.1 is well within normal range. And, as Brian says, serum creatinine can be elevated by exercise.

I should tell you that my serum creatinine is chronically elevated because of weight lifting, which means my GFR is chronically on the low end. At one point, when I was having high microalbumin in the urine, I could have easily been diagnosed with stage II CKD.

I'm going out onto a fairly large and comfortable limb to say that you are probably A-OK.

Again, for emphasis because I think it really can't be overstated, Estimated GFR is not grounds for determining diabetic CKD. The first and earliest sign of diabetic CKD in teh vast majority if cases will be elevated micrialbumin levels and if you are at a ratio of 4 in a spot urine exam, you are definitely A-OK.

I'd talk about what could be done if you had CKD, but that's putting the cart way before the horse in your case.

12

Aww, we’ll thanks for going out on that limb. You make me feel better, which is not easy bc I can convince myself of anything.

I did just make an appointment w an Enzo here whose a type I himself and very well respected. My current is a good guy and probly a fine doctor but his main interest is not diabetes. So I feel like that is a step in the right direction. And if this is really not a disaster at this point I would like to take some steps to keep it from becoming that way. Hopefully it will just be a wake up call.

13

I have been wondering if my chemistry is just not quite the norm right now. I am actively losing weight (though at a snail’s pace) and I’m in pretty deep ketosis (last night I did a blood test and was at 2.5, but I am routinely insane with energy like I want to jump out of my skin which I think is evidence that I’m deep in) and I’m only eating once a day most days. I know that when I was pregnant my chemistry messed with my a1c results and I’m curious about how my current metabolic state could be messing w some of this week’s results. Sadly, though, I don’t think there’re any experts or authorities who know about this or are available to me. I’m pretty sure my endo will look at me like I have two heads if I lay it out for him.

Whatever might be going on (if anything) did not happen to me doing straight up Atkins or Bernstein. I’m not sure why this (50-70 G protein/<10 g carb and fat to satiety which tends to be between 950 and 1400 cals) would be so different.

I wonder if I’m eating too little protein and using lean body mass…

14

Well they were pretty surprised - like maybe one in 8-10000 patients can get off after such a long time. It was sort of a miracle.

15

Have your doctors suggested an ace or an arb if you are not already taking one? They are purported to slow progression of kidney disease. Secondly, if you drink colas, or anything with phosphoric acid, eliminate it from your diet. Thirdly, a recent study which was posted on a diabetic website stated it is not the protein in diet that causes kidney damage. Dr. Bernstein agrees. Your numbers don't look too badly, as the prior posters noted. My GFR improved by over 20% when I reduced A1C from 8 to 6.2. I have high microalbumin however my nephrologist doe not think kidney failure is in my future. She stated that after 45 years of diabetes, if they haven't failed by now, they likely won't.>

16

Oh man! lol I just bought a CASE of diet coke yesterday. I will happily give it up, though, if it will be at all helpful.

That's amazing that your GFR improved so much! Don't a lot of people think you can slow it or even stop it but absolutely can't improve? I know that Bernstein improved his kidney functioning so obviously that's not true. But 20% sounds pretty awesome.

I'm happy your nephrologist sees good things for you in the future!

17

It seems that eating low potasium has helped me. My dr gave me a list many years ago of what foods have potasium and I've followed that list and limited foods with P.