I'm trying to find out when it is considered normal for a doctor to give you a heads up that there might be an issue with your kidneys.
We just realized that for more than 10 years across 3 different doctors, none ever mentioned that a family member's eGFR was below 60. It wasn't a lot below, generally between 45 and 57, with one dip down to 35 a few years back. At dr # 4 it was down to 31--and she sent us to specialists right away.
Looking at 20 sets of labs, it was above 60 only twice (61 & 63 a year apart) in all that time.
Thanks!
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FairyKid
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From what I’ve heard it’s normal for doctors to not say anything until stage 3 or lower. In America at least, the reference on some labs is “greater than 60” even though it makes no sense bc you could be greater than 60 and be in stage 1 or 2 especially as a younger person I found mine to be in the mid 80’s low 90’s at age 28 which wasn’t normal. They moreso look at trends over time. I reviewed my old blood work over time and noticed a downward trend so now I pushed my doctor to see a specialist to figure if what’s going on.
With that said, I think most doctors are just not that informed on the disease and it’s progression so they are only really trained to notice it in the later stages. From most people I’ve talked to, their doctor didn’t mention anything until stage 3-5 or not at all and they only find out once they end up in a hospital.
I’m glad you found eventually found a doctor who is proactive though! Having a great doctor and neph is critical.
Thanks for the reply. I do understand that different ages have different expectancies--I can see why you were concerned with your lower than age-appropriate score.
Terrible that anyone would not be told until they were in the hospital! I can't imagine, plus looking back at your records later and seeing that a warning was there... ugh!
I should have mentioned that my mother was 70 years old, but it looks like she should still have had an eGFR of 75 which is why I find it curious that no one would have mentioned it to her, even as just something to watch.
It's especially odd since her previous primary care doctor (doctor #3 to see the consistently low numbers, with him for 4 years) is a nephrologist by specialty but takes on other patients as a GP which is how she ended up there for her high blood pressure and heart disease.
Honestly, I just chalk it up to some doctors just don’t care and just phone it in for a paycheck so unless they see glaring obvious issues they won’t go in depth with their patients sadly. I’m trying to find a new doctor now bc my docto for years was pretty much like “your blood pressure is a little high” but I brushed it off as no big deal when in reality thigh blood pressure can be a sign of heart issues of kidney issues since kidneys help regulate bp. I hope that your mother’s new doc is actually on top of their game!
Thanks FThomp--I hope you find a new doc that is both good at their job and good with patients.
We now have a handful of doctors and they seem to each think the others are handling their specialties aspect well so here's hoping we've got it covered! I'm concerned that the kidney issue was actually a sign of the bigger issue we're now battling which seems to improve her eGFR numbers when treatment is going well--and could we have been working on a fix 10 years ago that would have given us better odds.
Plus my mom's diet had a lot of bananas and potatoes that she would have eaten in moderation or eliminated if she knew there was a kidney issue, hopefully slowing the dropping of her eGFR. I know a lot of the drs seem to think there's nothing to be done before 3b, but our nephrologist said that the renal diet can help keep us in 3a and we're going with that.
Hi FairyKid, Th is issue is very common, unfortunately. This is one reason why educating people on CKD is so important. Until doctors, and more importantly, INSURANCE, will cover a baseline check annually for kidney function, it will go undetected. We get our hearts, our BP, our weight, and other levels for liver and blood tested, GFR has to be measured also. The doctors need to talk about it with patients. We all see the information constantly on the TV, magazines and other media about heart and diabetes. Have you ever seen a commercial about CKD?
Here's the other issue: I think it is because there is little to be done about CKD that doctors ignore it until it's an issue such as stage 3b or 4. The only thing out there now is medications for comorbidities such as high BP, diabetes and kidney stones. There is no medication with a direct impact on kidney function, YET. They have meds out now, SGLT2 and GLPT-1 inhibitors that are actually designed for diabetes and heart issues that are now also for CKD protection. But even the doctors are not up on all these.
The good thing is that although it is below a normal level for your mom, it was not drastic. So hopefully she or your family will learn about the things you can do to help keep the function where it is. Start with the National Kidney Foundation web site for information. We are here for your questions too.
Thanks Bassetmommer. Reading up I see that 15% of the US population has some level of CKD, it sounds like it could use a lot more attention! I had no idea it was so common--I'll be sharing my new found knowledge with friends and family.
We are hoping to keep out of stage 3b as long as possible through diet & by treating the condition that seems to have contributed to her eGFR decline--that seems to help so far. I just wonder if the other diagnosis would have come sooner if we looked in to the lower eGFR a decade ago--that it was an early warning sign.
Sadly I agree with all that Bassetmommer said. But it is inexcusable. My mum was never diagnosed (dad told her after checking her results online!). Unfortunately it contributed to more serious damage imo. Had we been aware earlier, we would've altered her diet accordingly.
Sorry to hear about your mom too userrotc. For years I have said to monitor your own health records, get a copy every time & review it--blood, radiology, etc. .... I know from my own issues that if you're not watching it, no one is--but we trusted and grew complacent.
We thought the lack of mentioning it to her was an especially unusual act by the most recent dr--since he's a nephrologist by specialty--but when I used the lab's website to see her historic numbers I could see back 10 years of bad numbers I found it odd that no one said watch your diet & your numbers.
HI FairyKid, I will tell you that diet is a great place to start. And there is a lot to learn about it. You have to become a label reader because there is a lot of junk in foods. That's why not eating processed foods is best. Lots of veggies and fruit and whole grains. I have been eating semi vegetarian for four years and went plant based in February of 2021. Seems to be holding my fragile stage 4 kidneys at bay.
Thank you--luckily we did most of our own food prep from scratch as a rule, and we are definitely keeping an eye on labels and doing research to better understand.
The nutritionist we saw said only white rice and white bread--no whole grains. Is that wrong? They also said no soy (so no tofu), legumes or mushrooms so protein has largely been small servings of meat.
Well, I hate to contradict a clinician but that no whole grains is old school. They now know that with plant-based foods, the concern for phosphorous is not the same as with animal products. For example, say chicken has 300mg of phosphorous. You absorb all of it. With brown rice there's about 160 grams of phosphorus in a cup but you only absorb half or less because of the plant based phytates. The fiber in whole grains is actually healthier for you than white starch products. Lowers glycemic levels and helps you pass food through, which for the kidney is very beneficial.
"Phosphorus in flesh foods, dairy, and eggs tends to have relatively high bioavailability, whereas the bioavailability of phosphorus in phosphate-rich plant foods such as whole grains, legumes, peas, nuts, and seeds tends to be relatively low, because a high proportion of it is tied up in poorly absorbed phytates; humans do not make a gastrointestinal phytase (2). "
We were under-impressed by her (anyone can hand you photocopies of some book on a shelf, and that seemed to be the extent of her knowledge on renal diets...), so I'm more than happy to learn more and do some more homework about what is good and bad. Thanks for the links.
Hi Bassetmommer,I have actually seen a commercial about ckd on tv. It kind of sneaks up on me and so I never actually tune in until the end, so I am not sure how effective it is, but it is a start.
Actually egfr does NOT have to be measured. There are many, many doctors who do NOT believe in egfr anyway. It is far too general a calculation. It does not take into account the medications a patient is taking which can greatly effect the egr, their other health conditions (cancer, diabetes). It does not consider if the person even has just one kidney. BUT that does not mean that kidney health is not important. But as you say, a simple blood test is a FAR BETTER THAN EGFR way to test a patients kidney health. Any general blood test will include a test for CREATININE level. The result will give you a clear indication of your kidney health in an instant. It was used for years, long before there even was an egfr calculator. PLUS egfr labels people stage 1 and 2 when in fact they probably have no disease in their kidney at all. Which is why most doctors don't even mention it.Now in this particular case there was an absolute failure by the doctors if this patient was getting egfr in the low 30's, then their Creatinine level must have been way outside of normal. HOWEVER perhaps other health conditions of this patient (a 70 year old) were considered to be the cause of these readings.
Thanks RickHow. I get different 'normal' ranges for creatine from different labs and websites, but the level was .94 & above for all but one test over the years. On that early drop in eGFR it was 1.43, and was 1.03 and 1.04 on the next two tests (it was 1.11 on the test before the low eGFR).
I have been reading all the various information you have posted. I am just lost. If I have it correct your mother is about age 70. Her Creatinine levels have ranged at .94, 1.03, 1.04, 1.11., 1.43 at various times in past blood tests. Then you have indicated that her egfr has ranged, at various times, from as low as 31 up to 57. Now obviously all these blood tests were not done at the age of 70. But if you do the calculation for those Creatinine levels for a woman who in your situation, we will say was the average age of 67, you will get egfr levels of 67, 60, 59,54, 40 (the one odd test which you indicate returned her to a egfr level of 59 or 60. So in essence she is sitting around egfr 60 (54 to 67) for the Creatinine levels you provided. Now, the typical Creatinine level for an adult woman is between .59 up to 1.04 (for a man .74 up to 1.35), and varies slightly depending on the lab.Here is a quote from the national institute of health:
"it can be concluded that a significant part of the healthy population older than 65 years of age have a GFR (mGFR or eGFR) below 60 mL/min/1.73m2."
Also from the Mayo Clinic:
it can be concluded that a significant part of the healthy population older than 65 years of age have a GFR (mGFR or eGFR) below 60 mL/min/1.73m2.
Hi there, sorry to hear about this experience. I have had a lot of interesting conversations with my doctor regarding this and a black man in his forties I am a bit concerned. Education about this disease needs to be be more prevalent in society. I would like to ask if you have seen results of any other bloodwork because sometimes egfr does not give the complete picture. Altering the diet needs to be done regardless. I have done that in The last 2 years.
Thanks Kofori370--I do have the past bloodwork, so far have been seeing BUN and creatinine as above normal generally (in the range according to Quest Diagnostics).
That seems to be the norm in the U.K. My G.P had been checking my blood for six years, due to hypothyroid. I always rang and asked how my results were and was told 'ok'. Last year I noticed a request for repeat U&E's. I didn't hear anything, but a few weeks later a Pharmacist rang me to say my Cholesterol was high and they wanted me to start Statins.Whilst on the phone I asked why I'd had repeat U&E's and she said my Kidney function was poor and had been gradually deteriorating over the past six years and was now 43, but that they didn't consider it to be 'declining at a rate to cause concern'!
Thanks pheebee--ugh--how crazy is that? I mean, what if you always lied to the doctor about how much you drink? or suddenly started to drink hard and ruined the limited function you still have? I don't mean that in a critical way, just a health-effecting way--how many people ended up drinking a ton more during all the shut ins around the world in the past 2+ years? A lot. Some for fun, some out of boredom or depression--I'm pretty sure most folks with decreased function would've aimed for something less damaging had they known.
I've had a chronic illness for 30 years, I learned then how important it was to get a copy of your bloodwork and do your own research about the results, keep an eye on things. Unfortunately, we stopped being so diligent over the years as my health stabilized and this is where we've landed.
So I just gave it a google, and it looks like hypothyroid is a risk factor, which makes me need to stay on top of my records for CKD as well (in addition to my HBP & now family history).
Yes exactly, luckily I don't drink, but I do smoke, I would have drastically changed my diet six years ago had I known, at that time I was 52years old, so young enough for it to be a concern.I have now changed my diet and reduced but not managed to stop smoking.
I think they actually gave me a false sense of security by telling me my results were o.k
Yes hypothyroid is a risk factor, but like you, I thought that as it was stabilised I would be o.k.
I sympathize, smoking was a hard habit to kick and if it wasn't for the negative health effects I'd go back in a flash. (Though now, if I take a drag off of someone's cigarette, I don't get that same enjoyment which is both good and bad, lol. Just like when I went off sugar and then would have my weekly cheat--I could feel how hard it hit my body. After a while I didn't want the weekly cheat anymore because of how sick it made me feel.)
It wasn't easy--I tell you that! You do have to be ready to do it though--and all the folks telling you to stop has the opposite effect in my experience. Doesn't matter if it is food, drink, smoking, biting your nails, losing weight... it's only when you're ready and when you find the right method for you.
I tried to quit smoking a half dozen or so times before I got it, clearly I just wasn't ready--part of my tapering off was smoking half a cigarette and relighting it later to finish it, made it a whole lot less appealing (as anyone who has ever relit a cigarette will understand that, lol). The weekly sugar treat was to console me when I wasn't ready to give sugar up entirely (and I do eat sugar now, just very little compared to my previous diet). When you're ready, you will accomplish whatever it is you want to do in your own way.
I agree with RickHow. It's the creatinine, in particular, and bun levels that truly matter to the specialists; egfr is mentioned in general discussions with patients. As one ages, egfr declines (some view those numbers as a type of percentage) while creatine and bun levels rise. There's significant back-n-forth in medical circles as to when these levels, particularly egfr, are an issue in the senior population. (Some research reports indicate about half of those over 70 years of age have an egfr of less than 60.) So take a look at the whole picture, not just egfr, and get your questions answered by professionals. Everyone deserves to live a long and quality life including senior citizens. And yes, the warning from health professionals often comes too late to prevent issues. My hubby, a T2D, wasn't informed until his egfr plummeted into stage 4 and his creatinine and bun levels showed alarming trends. (I also think denial played a part in his case.) He went on dialysis for a short time afterwards and received a transplant at age 71. Sending encouragement that you and your mom are able figure out the situation so she (and you) can make great decisions.
Thank you for your support and sharing your story. I've seen eGFR suggested 'healthy' numbers by age group ( kidney.org/atoz/content/gfr ), but not one for creatinine or BUN levels. For ages over 70, they suggest that 75 eGFR is healthy,
In case you're interested, this is the controversy that is swirling around egfr classification/misclassification issues and the senior population: consumer.healthday.com/kidn...
I was diagnosed by new Doctor at CKD 3b , at age 75 ( 5 years ago). I was put on prescribed diet. Previous Doctors made no mention of it although eGFR was out of range.
Thanks orangecity41--I do wonder why the doctors don't think starting the prescribed diet as soon as there's a sign it's regularly below normal would be beneficial. If high blood pressure is important enough to regulate to stop progression, why not diet?
Simply be aware the renal diet should only be followed by those whose labs show that it may benefit them. Egfr is only one piece in the puzzle; there are also electrolytes. The renal diet manipulates and lowers electrolytes; namely, potassium, phosphorus, chloride, sodium, etc. when those are too high - lowering them when not warranted can cause cardiac, mental, and other issues. This happened to me. As a caregiver to my spouse, I prepared his meals and eliminated sodium, potassium, and more to the extent possible. Then, to be supportive, I sat down to enjoy those same meals with him. After a time, I felt sluggish, my vision "shimmered", my heart skipped beats, the sidewalks seemed to roll oddly under my feet, etc. Then, suddenly, I passed out three times in a row in a restaurant. I barely escaped being hospitalized (and losing my drivers license in that debacle). The cause was very low sodium and very low chloride levels. My blood pressure was very low (which can also create kidney damage). Anyway, my doctor was very concerned and monitored me closely over the months until my electrolytes stabilized. So, always look at labs (electrolyte levels are listed on those reports) and check to see if a diet change may be warranted. If so, that would be a great time to seek a doctor's or dietitian's guidance. A renal diet is not a diet for everyone.
I'm not sure--I was seeing an ortho doctor and looking back the only lab they ever ran was a creatinine and gfr, Going through some old records online and I see the gfr was 49--I was never told that. That was over 2 years ago. I saw my family doctor last week and he ran some baseline labs--my gfr was 45. The office immediately called me about it and brought me in for more labs. 2 years of any intervention I may have been able to do wasted--thanks doc. Guess it just depends on the doctor.
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