Change in Diagnosis?: I am very confused. I... - Kidney Disease

Kidney Disease

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Change in Diagnosis?

27 Replies

I am very confused. I had blood work in August 2018 and for three months my gfr was 51 and creatinine 1.1. I just had blood work yesterday and my gfr is 80 and creatinine is 0.80. I wonder why the change? I thought numbers stayed the same. I'm not unhappy I just feel I was told I had kidney disease now I may not??

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27 Replies

Numbers do not stay the same. Depending on so many things like diet, exercise, medications, and other health issues your GFR can and will fluctuate. Mine was once 32 went up to 57 and then several months back went to 65 and two weeks ago was down to 53. My doctor is running more labs in two weeks to see where I am.

It's a roller coaster ride and if you are consistently being vigilant you can usually keep it somewhat under control. The ups and downs are better than the down only. If you want to hold off dialysis keep doing the right things and don't get too high or too low emotionally.

in reply to

Thank you!

orangecity41 profile image
orangecity41NKF Ambassador in reply to

Mr K good response. My eGFR also has been up and down. Is best to not get too high or low emotionally and stay on even keel and maintain diet.

Philipjm profile image
Philipjm

Hi

As me Kidney says bloods do vary with many conditions, if you are suspected ckd you would (inUk) have a regular appointment with your renal consultant every 3 months to monitor your bloods to confirm or not if you have ckd.

Philip

RhenDutchess123 profile image
RhenDutchess123

sometimes a fall or exposure to toxins can make your kidney function decrease and then returns....usually you need 3 or more bad lab readings to confirm permanent damage...think about what you might have been doing and avoid it..i found that my kidney function would decrease if i was using stain or varnish or cleaning products without good ventilation

Jonquiljo profile image
Jonquiljo

The blood lab tests are done on automated machines. Sometimes, more often than you’d expect, the machine will get all or some of the tests wrong or inaccurate. Hence the need to repeat inconsistent results. There is room for human error too as the blood needs to be be prepared and diluted for testing.

Bottom line is if something is off or not in accordance with what you would or could expect - have the tests repeated. Some labs (especially at hospitals) will do this automatically for strange readings.

in reply to Jonquiljo

Thanks and this is very good information!

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo do think my new reading of 67 is a fluke? Again I had three low tests all within a 5 week period but last test last week after a few months was gfr 67 creatinine 1.2 and bun 13

Jonquiljo profile image
Jonquiljo in reply to Barnhouse

Sorry, buy you’d need another test to see what trends are real and what are not real. If you have changed part of your lifestyle, this now may be the fruits of your labors. Another test or two is needed to prove that out.

Something you were doing in that 5 week period could have been causing the lower readings. Perhaps not. You have not told us what your readings were 6 months, a year or more ago. That would certainly help a lot to see your trends. A LOT.

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo the only thing I know because I was not going to see a doctor regularly is that in October of 2017 I got a medical because of an insurance test and all my results were within the normal range including creatinine at cetera Then I started to work out very heavily with weights. I am not sure from October of 2017 to 2018 I was drinking enough water. Perhaps it's just wishful thinking that last week's test was not a fluke and I am okay. I am so wishing I was okay and I didn't have to worry about this anymore. The anxiety is debilitating!!

Jonquiljo profile image
Jonquiljo in reply to Barnhouse

Working out heavily with weights and getting dehydrated at lot "could" do it. If you NOW are not working out heavily and not getting dehydrated - it seems to me that another test in a couple of weeks may be similar to the one you just had.

If dehydration was a factor in the 5-week period. Your BUN (Urea) blood value might very well be elevated. What has your BUN been through all this - and before and after?

It's not like you've been taking 25 Advil a day or any of these things that are known to be nephrotoxic.

Ironically, your Dr. could completely put you at ease by having you take ACR urine test. They measure albumin and creatinine in urine and take the ratio. All you do is fill a cup at a lab. It's easy! If you are not leaking protein, then I suspect that you are not having kidney problems, but rather test problems! There are always the nay-sayers about all of this - but I'd prefer good old evidence vs. following a (not very reliable) chart any day.

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo bun 1'st test was 23 second test 18 third test 16 last test was 13 after my diagnosis last Aug I did stop working out as heavily

Jonquiljo profile image
Jonquiljo in reply to Barnhouse

Your BUN is following creatinine (never perfectly). That would indicate that dehydration and over exercise could be a problem. Bun from 23 to 13? Bun is not supposed to be as stable as creatinine, but it seems from what people post, creatinine is not that stable either.

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo I just want to again thank you for so patiently responding to so many people's concerns. I am anxiously awaiting the day when I can just relax about this a bit. Don't know when that will happen I am living every day in terrifying fear!I got this good report last week then read that a jump of that nature is not all that unusual. Takes the wind out of your sails. But your responses I know are very helpful

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo it's me again Barnhouse. We have not talked for a while but I just got another gfr reading and it was 71 So it has now gone up twice. My nephrologist actually dismissed me

However from what I read at age 56 almost 57 a gfr of 71 still indicates kidney damage though I have np protein or blood in urine. Still so traumatized!! Can I ask your opinion?

Jonquiljo profile image
Jonquiljo in reply to Barnhouse

No damage -- you may be slightly off the norm of creatinine values, but maybe not even that. Hey, my creatinine has been in the 1.2-1.3 range for 15 years! That is the top of the range. It's just the place I fall in with all the values of other people. When converting to GFR, it is a mathematical formula that involves creatinine and age. Pretty stupid since people come in all shapes, sizes, and metabolic variance. Yes, there is some really lame attempt to guess at age reduction in body mass affecting GFR, but GFR in general is really a guess.

I'll put it another way. In no scientific/medical study has it EVER been determined that slight variations from the norm are decreased kidney function - or even that our kidneys get older as we get older and produce less. To take it one step further ... the whole GFR concept is mostly theoretical. About the only time it makes any sense at all is when you get to very low GFR's - and then you look at other things to determine the extent of kidney insufficiency.

Lets put it another way .... people in stage 1 and 2 technically have insufficiencies too - if you believe the nonsense that the CKD staging system uses. I don't. See the article ....

theconversation.com/making-...

It's not really scientific - just common sense. It basically talks about the over-diagnosis of kidney disease and other "diseases" in the current era of too much medicine. One thing I will add is that it is a product of our insurance -based medical society. To get paid for a Dr. visit, the Dr. has to submit your insurance (or Medicare, etc.) claim with a diagnosis code. No code, they don't get paid. Doctors get upset if they don't get paid. So if you go to a nephrologist - you have to have CKD - at any stage. It's DEFINITELY in your file. Even if your GFR went up to 110 and stayed there, there would be the old diagnosis of CKD. If you go to a cardiologist with a little bit of high blood pressure, you will be coded as having some sign of cardiovascular disease. They have to do that or they don't get paid. The easiest way to manage all of this is to lower the standard of diagnosis to include most every patient that will see you. These diagnosis codes are on your lab tests too. It's the way it works - dumb - but that is the way it is.

So be glad your GFR is jumping even higher. Live life and enjoy. As my wife says, "it's always something that we don't expect that gets us in the end." Smart woman - that's why I married her! Good luck.

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Thank you again so very much Jonquiljo!!

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo Barnhouse back again now April17 2019. I am a little discouraged again but you always seem to pick me up Just had enough blood test and her was 63 and creatinine was1.26 So in the last four months my gfr readings have been 67 71 and now 63. I did run 6 miles the morning of the the test and drank coffee just before Your wisdom is always very appreciated. I continue to be traumatized very severely by all of this. I am wondering what you think Again I am 57 yrs old

Jonquiljo profile image
Jonquiljo in reply to Barnhouse

Hi. The first thing that strikes me is that I have had numbers like you (and fluctuating all over the place for the last 15 years. So that was between ages 50 and 65 (almost 66 now).

The first question I would ask you is whether your blood work is being done at the same lab? 5 labs can give 5 different results. I notice that different labs use different equations for calculating GFR.

The main thing that I would be focusing on is how much you are working out. Running 6 miles and drinking coffee before the test could throw things off. Remember that all these variables are “snapshots in time” and you are looking at one specific time in a specific day with lots of activity that day. If you had given the blood hours earlier (before) the exercise - you may have gotten a completely different result.

Remember that STILL ... your numbers are at the upper end of a “normal range” - and that is certainly NOT a cause for concern. Again, I have had the SAME high creatinine over the past 15 years. It is not substantially changing - therefore there is nothing to worry about.

Of most importance to remember is that all of these tests are really bad approximations of reality at best! This is all theoretical. It is based on serum creatinine which has never been proven to man much when it comes to kidney function - except in extreme cases. You are far from an extreme case! Your nephrologist tested the REAL vital details and said nothing was wrong. When you start leaking lots of urine protein, then maybe worry a bit.

Remember, because some doctors come up with a screening test for CKD - it doesn’t mean that the screening is accurate. Its really only (close to) accurate for those with extreme numbers. Frankly, any test that calls stage 1 and 2 CKD a “disease” state is “full of it”. Most physicians don't know what to do about this nonsense. There are lots of Dr’s that say this whole system is a pile of crap. Medicine is far from precise - and often politically (within medicine) motivated. Not one of them says you have a real problem. Please listen to that, not the rules of a dogmatic screening system. Good luck.

Jon

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo thank You! You AGAIN are of great encouragement!!!

Jonquiljo profile image
Jonquiljo in reply to Barnhouse

Not very difficult to encourage you as I really don't think there is much wrong, if anything, with you. Try to relax. I freaked out when I looked at my numbers initially - so that is normal. The problem is that when you REALLY look at them, the numbers don't really indicate a major problem (or any problem) at all.

I swear, this ridiculous "staging system" for CKD must make more people sick from stress than it does to identify disease! With all due respect to those who invented it - they meant well - but they still can't agree on how to compute GFR.

The whole original intent was to create a simple and inexpensive screening system. Simple ---- yes, a bit too simple. Inexpensive --- likely not as people use a fortune in medical care to follow false leads. But then again, the cardiovascular risk calculations have been changing all over the place for years. The same type of effort - trying to simplify something that is not that simple.

Barnhouse profile image
Barnhouse in reply to Jonquiljo

Jonquiljo I don't know if you still monitor this website. Hope you do because you are a real help to people including myself. I haven't talked to you in over a year but I just got another kidney test done and my results came back 67 GFR.so in the last year-and-a-half I've had four tests 63 67 71 and 67 I am now 58 years of age and I just wanted to get your take on this if you think I'm still in a relatively good place. Thank you so much for your inputs this is barnhouse speaking.

driffieldpaula profile image
driffieldpaula in reply to Jonquiljo

This as put my mind at ease. I went to see my consultant on 2 nd Jan and my kidney function had dropped from 22 down to 15 . Going for another blood test in 2 weeks so hopefully this test was wrong due to Xmas naughty eating

WYOAnne profile image
WYOAnneNKF Ambassador

Lower GFR can be caused with something as simple as being a little dehydrated. Your creatinine numbers that you mentioned are normal. Usually to be diagnosed with CKD it takes more labs than just to get your creatinine and GFR and is done over a longer period of time. Urine tests and 24 hour urine tests are done to compare these results with your blood tests. That's how you get a true diagnosis of CKD.

Alex6157 profile image
Alex6157

I have had a similar experience: 4 years ago my eGRF went from 56 to 73 within a couple of months, even though unfortunately it did not stay that high, right now it is 55.

BBland profile image
BBland

To God be the glory ! Praying your numbers stay up and stable . Always excited to hear good news about kidneys improving .

God bless ! ❤️

sharonlyn profile image
sharonlyn

join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://facebook.com/groups/natural... answer the 3 questions when you click on the site to join or you will automatically be deleted...

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