That Which Nobody Talks About Here...Cys... - Early CKD Support

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That Which Nobody Talks About Here...Cystatin-C

Marvin8 profile image
12 Replies

Folks, ESPECIALLY you folks in the earlier stages of CKD, please do yourselves a favor and learn about Cystatin C (pronounced siss-tay-tun C). It is a protein in your system that is used as an alternative biomarker to determine kidney function, and the likelihood of deterioration to both end stage renal and heart disease. ALL nephrologists acknowledge Cystatin C as potentially a game changer in helping to diagnosis and stage kidney disease. Fringe progressive nephrologists will use it as the ONLY test to determine kidney status, whilst the most conservative old time nephrologists might brush it off entirely. More and more mainstream nephrologists are using it as an adjunct to their diagnosis and treatment plan. I was diagnosed two years ago with borderline Stage 2-3a and my nephrologist hadn't ordered a Cystatin C test, so for the past 2 years as my eGFR has danced between >60 and 52, my mind has gone in and out of a tailspin with worry. That's just who I am....I'm a natural born worrier. Of course, Stage 3a is completely brushed off by most nephrologists (if can even get to SEE a nephrologist at that stage), but it sure is hard to brush it off by us patients.

So I just got my most recent bloodwork back and my eGFR was at 56, up from 52 six months ago. When I was first diagnosed, it was 59, then >60, then 58, then 52, blah blah blah. So what did I do? I cut back on red meat, brought my protein down to 50-60 grams per day....AND STARTED EXERCISING, DRINKING LOTS OF WATER...2-3 ltrs/day, and started eating more fruits and veggies. I feel better, look better, and my GFR went up slightly. After buying Lee Hull's book, I'm considering moving towards a more vegetarian/vegan diet in order to reduce the acid load on my kidneys.

OK, back to Cystatin C....

GET....THE....TEST....DONE !!!

In my case, my GFR was recalculated up to 85. WOW!

My regular creatine-only based GFR is 56.

The combined equation gives me a GFR of 70. I'll TAKE IT!!!!

Most importantly, the Cystatin C test, when used in conjunction with the creatinine test, tells you the likelihood of your CKD worsening...unless you're already at low Stage 4 or 5, of course. Here's the takeaway; If your Cystatin C calculated GFR is ABOVE your creatine GFR, that's AWESOME news and heightens your prognosis significantly. The greater the difference, the better your prognosis. Mine was nearly 30 pts better and all my lab work confirms that everything else is normal, although I haven't received my results back from my 24 hour urine collection yet. ON THE FLIP SIDE, if your Cystatin C GFR is at or below your creatine GFR, it portends a worse prognosis.

Again, all this Cystatin C stuff is a little bit controversial. Some of the top nephrologists want to do away completely with the creatinine formula and replace it Cystatin C so that fewer folks are diagnosed with CKD. Most nephrologists are taking a wait and see attitude. Many are acknowledging its potential importance and using it in their overall assessment when discussing with patients. Bottom line: Make your pcp or nephrologist order the test. It took a little pushing from me, but they did it, and now I feel much better because my prognosis for end stage renal disease and heart disease is much better.

Once you get the test result, feel free to plug into this calculator. I hope your result is as positive as mine was.

kidney.org/professionals/kd...

Keep drinking!

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Marvin8 profile image
Marvin8
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12 Replies
Susieg1 profile image
Susieg1

Thank you for this information. I will ask my doctor to order it for me. I just hope it is available in Puerto Rico where we now live.

Hul1 profile image
Hul1

Very interesting, I will be sure to mention this next time I go for a blood test and see my Gp

RonaldoResuelto profile image
RonaldoResuelto

Interesting. I have run across the term Cystatin C a few times, and realized it was supposed to be a little more accurate. Your information puts a whole new face on it. I will be looking into it further. Thanks.

Angip99 profile image
Angip99

Holy crap! That is amazing!!!!

Dragondog profile image
Dragondog

I pushed for a nephrologist referral who then was not particularly interested in me as my eGFR was 49. Because of some other bloodwork problems she did agree to order a cystatin c test. That’s upcoming. I will be glad to get this diagnosis more narrowly defined. Here’s an article advocating the routine use of the test: kidneynews.org/kidney-news/...

HisLittleOne profile image
HisLittleOne

Marvin,

I just got back my results from the Cystatin-C test and it was NORMAL and my eGFR went up from 59 (last creatinine based test last month) to 66 on this test...so this bumps me up from Stage 3 to Stage 2!!! YAY!!

I'm still watching my diet - but not obsessively like before. Thank you so very much for recommending this test to us...it can make a huge difference, and appears more accurate in assessing kidney function. Doctors need to become more aware of this test.

What a great relief this is...I am SOOOOO grateful for God's answered prayer!

Marvin8 profile image
Marvin8 in reply toHisLittleOne

Am glad to have helped. Like I said, as long as the Cystatin C gives you a better eGFR number than Creatinine, it's good news. :) If I recall corrrectly, the only thing that can throw of the cystatin c number is if you have thyroid problems.

HisLittleOne profile image
HisLittleOne in reply toMarvin8

I do have hypothyroidism for over 25 years but have been on medication for it and my thyroid levels have been stable...so hopefully that isn't affecting the test results 🤔

Marvin8 profile image
Marvin8 in reply toHisLittleOne

And that's where my knowledge base ends. You'd have to do some more research to see if/how thyroid medications may or may not interact with Cystatin C.

HisLittleOne profile image
HisLittleOne in reply toMarvin8

I'm seeing a nephrologist in about two weeks so hopefully he will be able to answer that for me...but I'm still encouraged by the results today! :)

Marvin8 profile image
Marvin8 in reply toHisLittleOne

As well you should be. :)

I'm seeing my nephrologist next week and just did a 24hr urine. Hoping the results are good. Last time, my sodium was a bit high and so was the urine acidity. Trying to make some mods to my diet to make it more alkaline...ie...eating more low PRAL foods. Hard to get away from traditional protein, though.

HisLittleOne profile image
HisLittleOne in reply toMarvin8

I know..the protein restriction is the hardest part of the diet for me! 😯

I hope your test results are good. Stay well...blessings!

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