Just curious, 50 year old female, healthy. Bloodwork showed oddity above, when all markers were above normal yearly.
Met with Nephrologist, conclusion, she said not to put much weight on gfr scores. CR is main concern.
Bec I have no other issues, she doesn't think I need to change diet or make any changes. Coincidentally, my blood pressure has been high (my norm is low, 105/60 110/70), now 138/88, doc doesn't think anything is odd about any of the above.
She just wants to me to take askthe set in 90 days, and morning concerns her about my current test results.
Is this normal?
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socalnative
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I am surprised she wants to wait three months for a retest. My doctor had a retest the following month and then sent me to a nephrologist. Could be that I am 77, but was at mid 30s with gfr and 1.4 with creatinine.
If you are not able to get the blood test earlier, I would advise adequate hydration (even if you do get another test sooner). Lack of fluids can scew the results. Also, moderate exercise. Excess hard exercise can raise creatinine. Lower your use of salt. It is often said that we use too much salt, and this is also harmful to the kidneys. If you take NSAIDS, stop. Find other ways to handle pain.
In the meantime, educate yourself regarding kidney disease. Even 56 is mild kidney disease, and at your age, could become more problematic, as time goes by. Each of us has to decide for ourselves what steps we wish to take to prevent worsening of the kidneys. Some people, doctors included, say that we cannot do anything, but I do not agree. I would rather take action now, and prevent end stage renal disease. I do not want to wait until I am at stages 4 or 5 for them to tell me all of the things I need to do to protect my kidney.
Thank you for the reply. I was a little taken aback that after my second blood test and GFR dropped to 47, and creatinine increased to 1.9 she met with me and basically said to just stop whatever vitamins I'm taking.
Doc also said GFR's are not to be given too much "weight", to only look at creatinine.
I have had nephrologists tell me the same thing. Yet, right after she told me that, I had increase in gfr and decrease in creatinine because I did change my diet. Could it be they want us to get worse?
I am blown away by the nonchalant approach. When your GFR got worse, how bad did it get, and did you find a another MD? What treatment did they put you under? So sorry about all the questions, I feel so lost.
My husband's nephrologist (who was my first neph.) told him that there are so many so much worse, that they do not have the time for those of us at stage 3. They wait until people get to stages 4 & 5. They don't seem to recognize that if they work with us, we may never reach 4 or 5. Some of us think it is the money--the worse we get, the more money there is for the medical fields.
I did see another neph. who said pretty much the same thing, even though she could see that my numbers had increased when I took the steps to change my diet. I pretty much figured that was what they were all going to say, so I am doing what I can to help myself.
GFR did not get worse--improved from mid 30s to mid 50s and creatinine went down from 1.4 to 1.0.
Where are you in MN? Mayo Clinic seems to be doing good work. Lots of info available when you google Mayo Clinic, ckd.
Oh my, that's a shock! It's hard to wrap my brain around that. Both MD's gave you the same response??
Going to Mayo out here, if there is already a thread of stage 3 not being a big deal, then I more than likely will get the same response? Do you think?
The other part of this song and dance that i thought was strange, she never gave me a diagnosis, I had to message them today.
My diet is pretty clean, I moved to White Bear Lake from San Diego (I'm a native).
All I got was stop vitamins, every time I say that, it just sounds weirder.
I agree with your analysis. In my case, a previous Doctor did not diagnose anything even though eGFR was declining, plus other indicators and symptoms. A new Doctor properly diagnosed me and prescribed treatment plan. Seems many have some story.
Hi Orangecity41, would you mind sharing the name of your second Nephroligist? I'd hate to go through this again with the wrong doctor. I live in white bear lake
That in itself is odd. I am also on Medicare and at level 3, but my pd referred me right away. Getting a renal dietitian is another thing though. The dietitian they sent me to was a diabetes dietitian, and I ended up knowing more about ckd than she did!
This must be a new Medicare law. I checked with Medicare on it too. I was diagnosed 2 1/2 years ago. Heard too is hard to get a renal dietitian. I will check again with Medicare to see if any change in rule. I am on original Medicare with supplement.
Yes! Finally someone who is doubting (in part) the whole actions of the nephrology community.
I will take it one step further. I think that very little is known about CKD, and nephrologists don’t really know what to do until the disease gets severe. So, they treat only stage 4 or 5 patients.
From what I see, there is very little to define a progressive drop in kidney function. Kidney failure is easy (for them) as the kidneys stop working. But getting to the point of failure is unknown to some extent.
It doesn’t help that there are two different forums here - one for CKD and another for “early CKD support”. This somewhat mirrors the medical community where ‘stages 1-3” are often ignored by ALL doctors, and it becomes a problem when the kidneys start to fail.
There is something missing here. I don’t know what it is, but it really puts us all into a worrying state when we are not really sure whether we have that much to worry about.
I will tell my story later ... but I can say that at (borderline) stage 3a, my progression to that point is confusing. Looking over old labs, I have had high creatinine numbers for about 15 years. I am 65, in good shape - but my creatinine has been in the 1.2-1.35 range since 2003. Before that, I have no available records. The interesting thing is that NOT ONE DOCTOR has ever said that I have kidney disease - or was approaching it.
Another interesting thing is that my BUN levels have always been normal! All that I have ever seen written says that this should not be the case - certainly not consistently.
So I wonder - are we all being run around in circles? Or - do we have “real” problems that our doctors don’t want to even talk about until we are seriously ill?
To phrase another way, kidney disease and failure does exist. That is indisputable. BUT, with a 1-5 severity rating scale is the medical community just saing there must be a beginning - so we will make a scale from 1 to 5 to cover progression to failure. Some people go from 1 to 5 in a matter of weeks. Serious problems can and do happen. But if there are people who slowly progress - then we are talking about time frames that can be 20-30 years. The medical community has been fighting about how to properly and accurately compute GFR for at least 15 years (as can be seen in the medical literature). How could data of progression be compiled to give this “hard fact” 1-5 scale?
The reason I am saying this is that no one in the medical will even stop a minute to figure out what many of our problems are. If we push them hard, we may get referred to a dietician. What is the point of changing diet if it is not clear what the problem is? This applies to all of us who have NOT been diagnosed with a disease process, but have evidence of possible decreasing kidney function.
I really am baffled as to what, if anything, is wrong with most of us. My last lab test (for another issue) had 3 different ways of stating GFR and creatinine on it. It was done at a hospital lab. The multiple ways of stating GFR and creatinine show that the hospital lab was trying to satify multiple medical opinions. That worries me. I’m sure it would worry lots of people here - including the OP.
My theory is that it is all in the money. They can run all sorts of tests when we are first diagnosed, and can do all sorts of other things at end stage renal disease, but in the middle...they have no idea what to do.
I couldn't agree more with your comments Jonquiljo. Stage 1-3 is harder to figure out, and stage 4-5 is much easier bec there is hard data and well established medical protocol.
Trying to understand the root cause for each of us in the earlier stages? There are no answers out there, not anywhere, clearly that goes for the medical community.
I am very new to all this, it sure looks that way from a brand new set of eyes.
Frankly, I’m not sure there really is a stage 1-3. Most MD’s never pay attention to it. They can’t even settle on how to estimate GFR. If I see labs at one facility computed by one formula (and it’s own “normal” range) and another lab doing it another way - I am going to scream. How can you even have a “Stage 1 “ CKD if the numbers are considered by most MD’s to be very normal. It all just seems to be random, arbitrary, and without much thought.
I guess I have high standards as I have a doctorate in Molecular biology and worked in biotechnology for a while. It just makes me stop and wonder what is going on when there is confusion and disagreement in the medical community about the most basic things. How can you possibly base a whole disease process on an indirect measurement of kidney function (creatinine)?
My creatinine has been the same (almost beyond “normal “ for at least 15 years. It doesn’t fluctuate. My GFR goes slowly down as I get older as age is the ONLY other variable used to compute GFR. Supposedly this has to do with muscle mass decreasing as you get older. But I have done lots of exercise for the past 35 years. If I am losing muscle mass it is barely perceptible. Because I turned 65, I became stage 3a. If I keep fit - by the time I am 80 I will be stage 4. But I don’t know if my creatinine has ever been low.
You see, none of this makes sense. I could have a severe problem brewing, or this all could be an artifact of how things are computed. It sounds like you are in a similar boat. Someone finally taps you on your shoulder and says your numbers are “of concern.” But instead of further investigation, they send you to a nephrologist who is clueless as what to do. If I ever get to a nephrologist, they will problably do the same to me. I’ve extensively gone over the medical literature and they rarely ever deal with “early CKD.” They talk a lot about kidney failure. Something doesn’t make sense here and I AM going to figure it out.
I think it isn't so much that there isn't a state 1, 2 , and 3 - as it is that the people making up these scales are looking for simplicity. I get the impression as I read the literature that CKD is a whole lot more complicated than it is made out to be.
To deal with the physicians longest out from medical school - and the GP's - I think the field tries to make it overly simple so that it will not pose too much complexity for them. Stage 1 and 2 seem to be somewhat of a joke as they can mean a million things and likely are just steps on the continuum to stage 5. Stage 3 seems to be the big one to call attention to a potential problem - potential as even at stage 3 there can be a million interpretations. Stage 3a is more populated as it likely contains people with less of a problem than Stage 3b. I would liken them to "beware" and "beware more." But to beware is simply to look further.
It reminds me of hypertension in that the ranges and overall thought of what blood pressure numbers require attention varies quite a bit. In the last year or two there has been a push for lower numbers being acceptable and higher numbers being unacceptable. You don't have to have your hypertension get worse - it just got worse over the last 2 years as they have changed the scales on you. Your "borderline high" has become "Hypertension Stage 1." "Normal" is now LESS THAN 120/80 (both numbers). But again they are looking for a simplified continuous scale to simplify everything. This is why most people get their blood pressure taken and even though it is high, the person taking it simply writes it down and says nothing.
It all goes back to our (USA) insurance system (and likely other countries medical systems) where a Dr is only reimbursed or paid to treat one thing at a time. If you go in for a fever and they find hypertension, they (mostly) will only treat your fever and ignore your hypertension. When it comes to aberrant kidney values, these are shown in a blood test that is often done for some other purpose. They treat you for the reason you had the blood test in the first place, and ignore the fact that your creatinine was 1.5. Maybe a problem, maybe not - but certainly not reimbursed. Doctors often do not do anything for free.
Hypertension and kidney values seem to be the two most ignored results you can have - for this very reason. The FIRST TIME I learned about my hypertension and high kidney numbers was when I went through a specialist workup at Stanford for Chronic Lymphocytic Leukemia (CLL- my main problem). The Dr. I was seeing was one of the top in his field. I was actually seen by two Dr's at once and they went over everything in detail that they could test. THAT is very unusual. BUT, they saw me for CLL - but caught FOR THE FIRST TIME my hypertension and high creatinine.
I haven't had anyone ever tell me about these things in the (apparently) many years they have been around. I have traced my hypertension back at least 3 years, and my high creatinine (still no idea if it is bad or not) for 15 years. I even had Leukemia (CLL) for 3 years before I was diagnosed - by tracing it back via old lab tests. Yet no one even saw the red ink! It all is the same thing. Diseases become oversimplified, the tests enormous, and the attention span of the doctor smaller. Does this mean we are all walking around with time bombs in our bodies? Highly doubtful. What it does mean is that most visits to the Dr are quick and dirty checks for ONE THING only! They work with blinders on and don't likely even see what is really going on with you.
The good thing is that the real diseases are more complicated than described. The simplified staging is done to make everyone police themselves. But who has had a Dr tell them they had "Stage 2 CKD"? Very few if everyone. Stage 3? Likely very few. Even the nephrologist that treated Socalnative probably didn't want to do too many things in one office visit. They would only get paid to do one!
Great post !!! I have to agree there are so many confusing articles, within the health community and their medical literature, regarding ckd. Many articles claim there are lobbyist groups behind the rating scale, and that also ckd is over diagnosed, particularily in people over 60 without other risk factors.
If you happen to have any links of those articles available, I'd love to see them.
That's just the thing. I am "silently diagnosed" - no one will tell me I have CKD, but they treat me as if I have CKD. Its nuts!
Right now I have/had a problem with high blood pressure. I was taking a beta blocker (Bystolic) and recently given a decent dose of an ARB (Benicar - Omlesartan). Well, my blood pressure does down to a very good range - and within a couple of weeks it creeps back up again. It doesn't creep up to the original high level, but it still creeps to a hypertensive level. So I raise the dose, the BP goes way down - and then creeps back up again.
I'm still at a Benicar/Olmesartan dose that could go higher - but physicians are afraid to go very high on patients with high creatinine/lower GFR. So they don't know what to do and ignore me - and I'm sitting here trying to find someone who will pay attention. Grrrr.
I will go back and look for those articles.. been reading so many things this past week .. feeling like I have ocd.. I will send them as I find them.. one good way to find these articles is to type in overdiagnosed ckd.. here is one that was in the new york times.. but I have found others that are in journals.. and will seek them out, nytimes.com/2015/09/15/heal...
Very interesting article. Also very good Google search term - it came up with a bunch of articles that talk about the controversy of early CKD vs. simply aging. I tend to believe the articles. I am a mirror image of your situation. The big difference is that I have high blood pressure that will not stay down with medication. It goes down each time I raise medication dose and then goes back up again.
Anyway, the whole business of early CKD and aging is very controversial. I (probably like you) am 65 but act and feel younger - staying active. I just don't know what to say. If you spook the medical community, they could send you to a nephrologist who is going to say you may have CKD when it is really not serious. You just don't know. But there could be other factors involved.
I have never felt better in my life.. until I read about this gfr.. did you take the time to read the many comments on the ny times article? great info as well. One doctor pointed out that kidney doners, with only one kidney, have gfr of 30 to 40, and they do well for the rest of their lives. we have more kidney function than needed. also low gfr is more concerning in younger people, There are many studies on ckd mostly funded by drug and mechanical medical supplies companies. So their clinical trials are used universally, and no one bothers to refute it., and this goes to requiring specialists etc, in the health care system, which pays out big bucks.. yes knowledge is valuable, but as we age our muscles ache more etc.. we do not get labeled someone has chronic muscle disease.. but eating better, excercising and doing our best to be as healthy as possible, is all we can do..
Yes, it is a big problem with healthcare in the world. All this happened because people tried to standardize and simplify kidney disease in 2002. Well, they really made a mess of it. When you think of it, the main screen for CKD is eGFR which is totally a measure of creatinine with is very indirectly measuring kidney function. Creatinine is so indirect as to be a joke. Now all the medical people are fighting over which is the best way to compute GFR. Maybe they need to re-think GFR!
The problem we (as patients) have is that the kidney disease could be really a problem or more likely not. So if you throw it all out, you don't catch it when it is a problem for someone. That's why when you look around this board, there are lots of people not very sure of what they should do. You have to be careful, but when is enough enough?
BTW, you're up really late or very early! I have an excuse, as I live in California. Its not yet Midnight here!
It is interesting to note that you could improve your creatinine by diet change.Can you give more details, like how much was your creatinine before and after how many days you saw the improvement.
I just received the result so my 2nd blood test. Whereas, in the 1st one, my Creatinine was 1.4, in this one, it was 1.0. Also, in the 1st one, the dietitian said my GFR was 36.6 and the nephrologist said that I was between 35-40, on this one, the GFR was 54.
I know that the numbers can go up and down, but what encourages me is that I have been religious about diet and trying hard in drinking water. I track every meal:
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Positive results after five months
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Is this something I should follow up? 
