I've been Dx'd with mixed connective disease. Recently I got labs done and received the results. My gfr was 53 and albumin, protein, and creatinine all normal, in blood and urine. Also I was Dx'd with diabetes 2 but have not had any problems with it, all A1c's have been normal for 6 out of 7 years since the Dx. I've not taken oral meds nor use insulin at all. My question is could my auto immune disease be causing the Gfr to drop. I'm really perplexed about it. I'm going to see my Dr. in a few days and I thought I'd try to get some kind of answer before then. By the way, I'm 70 yo and am wondering if this could be the culprit.
Low gfr...normal creatinine, protein, and a... - Kidney Disease
All being well our kidneys are designed to last about 130 years. BUT that is not 130 years at 100% function. Our kidney function declines as we age naturally so at 70 years with and egfr of 53% that really is not too bad at all. You have not said what your previous reading was so it is not possible to comment on your rate of kidney function decline over time. I would not worry too much. I am 51 years old with egfr 12% so that really is something to worry about!
I take my 2-year-old RAM into the dealer for a scheduled maintenance check and when it's completed I get a computer printout showing me what they did and also information on what may be a problem before the next visit. If it's a serious issue they tell me right away, but if it's not too bad they tell me to keep an eye on the gauges or some light on the dash and if needed, call for an appointment.
That's more than any of my previous physicians ever did, and they get paid better than my mechanic. I never learned in any classroom that my body parts deteriorated over time. I guess I was just expected to know that.
Slowly over time, I learned that fact about certain parts.
I was in the second grade when Billy, my good friend, and I were playing cops and robbers. I happened to be the cop that day, and caught him and put him in jail, where he proceeded to use a piece of glass to cut my arm and escape. The doctor said only 14 stitches would be needed to close the wound. Billy and I played again the next weekend, this time without the glass.
I was in the third grade when my brother and I had to have our tonsils removed.
I was in fourth grade when I found out I needed eyeglasses.
I made it all the way to age 19 when they had to remove a piece of shrapnel from my arm after a combat mission. My arm healed and except for the scar, you'd never know it happened. I had buddies die and I visit their names on The Wall every couple of years.
I was 38 when the doctors saved one of my daughters (12 years old then) from an accidental overdose. She's doing great now and her son, my grandson, is graduating this May with his Ph.D.
I was 50 when I was told that my blood sugar was too high and had to make changes in my diet and exercise routine.
I was 64 years old when I developed cataracts and had to have them removed.
Over the last 51 years, I've accumulated enough paperwork from my mechanics to stack on top of each other and easily tower over my 6'2" frame.
Over the last 3 years, I've accumulated about 3 inches worth of medical reports and only one report, near the top (15 months ago) told me I had Stage 3 CKD. From experience, I learned that our eyes could go bad and you'd have to wear eyeglasses and later contacts if you could, our hearts could also go bad and even be replaced, our hearing could go bad and you could get hearing aids to help you hear.
I was also aware on some level that a person could lose kidney function but never from things like Diabetes or Hypertension or Age. I knew some people had to have dialysis to keep them alive but never learned about the causes of kidney failure.
It would have been great if one of my doctors (up to June of 2017) had told me about CKD and what I could do to slow down its progression. My mechanics told me about my vehicles. Go figure!
Honestly....I know what you are talking about. I was Dx'd with Systemic Lupus ( an auto immune disease) over 20 years ago, then a bit later a Dr came into the picture and Dx'd it as mixed connective disease. I have more physical symptoms of systemic lupus than anything so far. I'm suspecting it might be the one that's causing this but am not sure. My medical papers are like yours. The stack is way to tall. Like a vehicle, with age things start giving out. So I'll wait to see my Dr. Monday and hopefully he will have a good answer for me. Once I got my type2 diabetes in control and for 6 years I thought I'd had things licked.....not so. Lupus is a disease that's a culprit that is known for its distructiveness with kidneys and many other organs in the body. My point is I'm hoping that its just one of those things that can be corrected easily before this problem worsens. This is why I wrote my initial post. I thank you for your feed back.
I totally agree with you. I have had creatinine levels for the last 15 years that were “concerning “ to say the least. No one ever said anything about them - ever. Even now (at 65), my hypertension got too high to be ignored - but every Dr - but one - never made a peep about it. In fact, even as I mention it to them, “kidney disease” is totally ignored, as if I never said anything.
The one thing I do not understand - and cannot get a Dr. to even pay attention to is:
1.) why has my serum creatinine been consistently in the 1.25-1.35 range since 2003? (I have no records earlier than that). My creatinine has been high all that time, and as I get older (never substantially changing), and my GFR keeps dropping. Thats inherent in the formula they use.
2.) In all the years that I have had a high GFR, my BUN or other kidney related lab values have NEVER been problematic? In fact, my B/C ratio has ALWAYS been 10-12. I do take H2 blockers that supposedly raise creatinine but it doesn’t refect real changes in kidney function.
I guess I don’t get any of this, but am further perplexed as to why no physician will ever talk about it? You’d think lightning would strike them if they talked about it!
Hi Jonquiljo, Funny, I am in exact same spot as you. I have elevated Creatinine since 2002. It is 1.3 on average with normal needing to be be below 1.2. My b/c ration is perfect, my BUN is low. No Proteinuria. As I have been aging (now 62) my egfr keeps going lower and lower. Nothing else changes only the egfr. That is crazy. So 10 years ago with same numbers I had normal egfr. Now today I am classified as stage 3. Crazy. Saw a nephrologist. He wasn't concerned and said not to think about it again. He said that I was heavily muscled so the creatinine is a result of that and high protein diet.
Frankly, I don't know. What I do know is that GFR is almost entirely based on Creatinine. Creatinine is not as stable an indicator in the blood as it is claimed to be. Many medications will affect GFR (either the creatinine assay or creatinine secretion itself) without changing kidney function. The only other indicator in the GFR estimation is age. So if your creatinine goes up, your GFR goes down. It does not account for unusual accumulations of creatinine as I described above.
An eGFR on the 90's or 100's is pretty amazing at 73. Mine has hovered around 60 - ish for the past 15 years, and I am now 65. Also, the methods of creatinine determination, reference ranges and GFR calculations have changed - and I am not sure for the better. Personally, I think the way GFR is estimated means very little. As a result, I can only conclude physicians don't take it seriously and as a result, people are not told of kidney impairment because of physician skepticism. Ironically, one is rarely referred to a nephrologist until their GFR dips into the 50's, 40, 30's. At that point, is it hard to take preventative measures. I wish I knew - but as I have posted above, I can't get anyone in medicine to take it seriously enough to talk to me about it!
I look at it and don't know what to think - and I have a doctorate in Molecular Biology. It seems somewhat of a joke to measure a biological system while constantly changing the way it is determined and using only ONE kidney indicator to do so - and indicator which is not considered 100% representative of kidney function. Either way, at 90+ - you are fine and would not worry. It's those of us who are stuck with physicians who will not or cannot address potential CKD because there are so many holes in that determination.
Thanks for info- thats why I am here to raed - gain knowledge - to preveny future problems. I know many diabetics - have had kidney problems - Dialysis or transplant --
I did have retinopathy- ( eye problem) and have taken nine ( 9 ) injections in each eye - which was not that bad--
so I am cautious about kidney damage.
I don't blame you! The key is making good choices, awareness and prevention.
I empathize with the retinopathy as my brother is a severe diabetic who has endured 4 years of retinal lazer cauterization, a detached retina and most recently cataract surgery. My husband and I are his only family left. Although he advocates to a point, we encourage him to be on top of everything.
My support goes with you.
I've been thinking about your posts. As I read I noticed that you have a PhD in microbiology. I was a nurse for 26 years until medical retirement happened due to auto immune disease. In all this time (1996 to 2018) none of my kidney functioning blood tests have been out of normal range. I get my lab test results over the internet so I know what they are before I even see the doctor. I did go back into the lab tests and found that my creatinine blood was 1.06. So with the eGFR low at 53, I ABSOLUTELY freaked. Mostly I concentrate my efforts on type 2 diabetes a1C. I control this by diet ONLY and it's proven to work well. In 6 out of 7 years my blood sugar has been normal. A question that's hung in my mind since 1996 is when all the testing that went on I had a positive ANA and a single stranded DNA, never ever a double stranded showed. While one Dr. would tell me I had SLE and was treating me for SLE the other Dr. Dx'd me with mixed connective tissue disease. However the medications for SLE were never changed except the steroids. The medical community decided they were going to destroy my organs with that much steroids (60 mg/ day) among all the other meds I took. Anymore when I see changes in my labs like the kidney functions of recent, I suggest a short course of steroids. It usually takes care of the problem. I don't accept that its nothing when labs come in abnormal though they may not be something of a high concern. One other thing I need to mention, over the years I have got off of all meds and take only cardizem ER 180 mg, and lipitor for 10 mg daily. Prednisone PRN for flares. The saying in my case least is best has worked quit well all of these years. If these kidney function tests are being ignored or explained away as nothing and the norm ranges are constantly changing then what is the point in bothering with any of it in the medical community. If I'm going into CKD I want to make changes and stop any progression of the disease. If we are told nothings wrong, don't worry about it, what are they waiting for I can only imagine that day with an announcement that we have kidney "failure"?? Anyway thanks for your responses to my post.
Personally I think the medical community missed the boat when it comes to kidney disease. I have numbers that indicate a possible problem and I cannot get any physician to admit I have a problem.
What I have noticed is a lot of really nonsensical work in the literature of kidney disease detection, etc. I think the reality is that you cannot be reliably diagnosed without actual kidney function tests from urine (or biopsy), and not blood tests. But the medical community insists on blood tests.
So everyone sticks to creatinine as a marker for CKD. But over the past 10 years, the literature is full of all these different methods of detecting serum creatinine and how to predict GFR with it. There are multiple detection methods and multiple means of GFR determination. I think all of them are pure speculation and nonsense. The current accepted GFR equation uses age and serum creatinine only. If I am twice as big as you (and not from severe obesity), then I am probably going to have a LOT higher serum creatinine that you do. Yet that is ignored by the GFR calculations.
It's insane, and my last blood test had 3 different ways to look at kidney function or creatinine clearance - from 3 different formulas. Two of them had no standard ranges, mainly because they have no idea of what these numbers mean.
I consistently have had high creatinine - low bun (as I have said before). It took me to notice that, and I am not a physician. The low bun really contradicts the notion of high creatinine and low GFR = CKD. That's all I can figure as to why people ignore my high creatinine.
I think medicine has only taken this seriously for the last 10 maybe 15 years. Up until that point, nephrologists mainly dealt with people having advanced CKD. People like me in stage 2 or 3 had no reason to see a nephrologist because no one was interested in PREVENTING CKD! I think there is merit in prevention, but I think that there is a total tower of babel when it comes to the way medicine looks at this. The sole use of creatinine as a determining blood value is nonsense. If other values do not support it then you need to figure out what is going on.
All the kidney foundations talk about prevention of CKD. It seems like the physicians don't get the word, however. So those of us who "are determined" as stage 2, 3, etc. are left in the dark. Websites like this one actually discuss it. But if we talk to most doctors, they would think we are crazy and worrying about nothing! That's just not true. If they cared, they would actually look at our blood tests that indicate kidney problems. And creatinine is NOT the only indicator. Blood values indicative of kidney dysfunction all have faults, but used together you can probably determine what is happening.
So here I am with all this data and no way of having anyone look at me for CKD. My creatinine elevation could be artificial. Or, my low BUN could be artificial. I find nothing about it in the literature. A nephrologist might do the tests needed, but likely they would just assume that my GFR as indicated by ONLY creatinine is the total picture. As someone who has some experience in biological systems and medical matters, I cannot agree with that nonsense.
I know your frustration. Question, as a PhD in microbiology, can you take your findings into a Doctor and debate what you think may be going on? Get them to start thinking about your questions. Blowing off a person isn't the answer to this dilemma. Serious minds together is the answer to come to a positive conclusion. The medical profession has had many hard and argumentative knocks through the decades. Sometimes progress can be made when someone like you,( with your doctorate) steps up to the plate and seriously engages in argument to what you see and what they tend to disregard. Maybe a colleague of yours could help you through some of these questions you have. I can tell you I've lived through a pure "H" over 20 years ago with the SLE debate between doctors. It is pure frustration, and I was still sick, very sick. The Doctor told me that I had a 50-50 chance of making it through the flare. One thing I'm a firm believer of is that diet holds a key to much of our medical problems in this country. 30 years ago type 2 diabetes was adult onset diabetes. Now it's common in children, and we are seeing high cholesterol in children. Kidney disease was just not heard of back then much at all. I hardly ever cared for a CKD patient and dialysis clinics hardly existed, mostly dialysis was done in hospitals. They are everywhere now. That may be in part by increasing population and advancement in medicine but way there is far to much. I would love to see a decrease in all areas of diseases and that would certainly define a better advancement in medicine. Its as if the medical profession is stuck in the mud with their foot on the petal and pushed to the metal spinning in the mud, in high gear and going nowhere. Do you still work? By all means I want you to know my knowledge in medicine is minimal compared to many others but I to have a hard time understanding why these doctors can't come to a meeting of mind and come up with standardization, of some of these tests, that would better define CKD. Thanks for your response.
Sorry to hear how much you suffer. It must be frustrating to YOU also. I gather SLE is another one of those diseases that is poorly understood and turned into a medical basketball. This happens all while you and people like you are suffering. Sorry!
My molecular biology was a long time ago. I left it after a while to pursue other interests - i.e. - I got sick and tired of working for companies trying to swindle money from sick people.
Anyway, I am too old now (65), and the main reason I even have see Health Unlocked is that my primary problem is that I have Chronic Lymphocytic Leukemia (CLL). It probably won't kill me for a long while, if ever. But I still have my hands full with that problem, though medical care on the CLL front is far better than anything I have ever experienced.
The problem in general is that MD's do not like PhD's. I've worked with a million of them side by side for a long time, but they never can drop their "attitude." As a result, many Ph.D's dislike MD's. But I am not one of them. They just get stuck on a few basic things once in a while.
I don't want to get morbid here but the problem with CKD is that it always is considered a secondary cause of death. The primary cause is seem mostly as Cardiovascular problems. What the MD's fail to see is that the CKD will cause serious cardiovascular problems to the point of being the main causative factor. So they list people's cause of death as "Heart failure and/with kidney failure."
The reality is that even CKD (if severe enough) will cause major problems that kill people. So instead of telling people not to eat donuts or steaks because of heart disease - they should be saying not to take certain medications or eat too much salt because of what damage it can do to your kidneys.
We always hear that high blood pressure is dangerous because of heart attack and stroke risks. HBP causes a LOT of CKD, which in turn causes a lot more of these problems. Eventually they will figure it out, but they won't listen to me.
I hear you and I understand. Yes Dr's do tend to carry attitude and plenty of pride. The unfortunate part of all their pride and attitude is they loose sight of the real reason they are in the medical field...helping humans have better life on this earth. It takes a man or woman in the doctor business to have good hearing a constant on researching information and compassion toward the persons paying their wage to get them well again. Instead many are rushed through the offices and told very little if anything and left to hang. The Dr has important things to do.....GOLF TIME....lol...you know what I mean.....
I was going to say age was the culprit, but then I read Lupus. All I know is that Lupus was the one thing they tested for when I was diagnosed with ckd. So, I am glad you are getting that checked out.
Now, back to age, at 70, you would expect your gfr to be lower than a younger person's. However, lots of things impact a given reading:
--what you have been eating
--how much you are drinking
--and, I believe stress level...
Hope for the best from your doctor, but be ready if you get a less than satisfactory answer. However, there is still a lot that you can do. I was diagnosed last November. Since then, I have researched, researched, researched. I have made many diet changes. At 76, I was diagnosed with a gfr of 34.4 and creatinine level of 1.4. Each of my last reading have seen an improvement, and I am leveling out at a gfr of 54.0 and creatinine level of 1.0. I am 77.
So, do not panic, and yes, there is much you can do. Go to your appointment and then come back here. There are many wise people who can share.
The best help that I found was in two books by Mathea Ford: Living with Chronic Kidney Disease--Pre-Dialysis; and Create Your Own Kidney Diet Plan. I have also used the DaVita information and several sites:
National education, support and advocacy organizations:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
Over the past two years, I have been able to adapt many recipes to more friendly ckd recipes. Now though, I have been diagnosed with Lupus, so my research has turned in that direction.
As I've been doing more reading about CKD and lupus the picture is becoming more clear concerning my lower For. I took several medications years ago after my diagnosis of SLE. I read a post last night concerning chemo and kidney disease. It dawned on me that I had taken methotrexate and for about 3 to 4 years and the maximum for persons with arthritis from SLE. Last night I checked side effects of methotrexate and low and behold kidney disease was one of the first items that popped up. Methotrexate isn't recommended for persons with CKD. It started the med is extremely hard on kidneys. Now, while no other labs indicated that I have CKD my Gfr is in the stage 3a and has been running that for at least 2 years. I'm wondering if my kidneys had suffered damage while I was taking methotrexate but once I was off the medication leveled out and became a norm with no further kidney involvement. The lab I use has a range that states my number are in the normal range when in fact my gfr was running in the 60s. Little did I realize that put me in a stage 3a CKD. I'm not going to use any of these meds again, Unless it's absolutely necessary and I really don't ever want to have to take as many as 18 meds ever, ever again. I'm not sure what methotrexate would do if I take it again, nothing was ever mentioned to me about the risks of kidney damage with taking methotrexate either. FYI: Metotrexate is a chemo. It came out in 1948 and was used for cancer. Later down the line they found that it helped with autoimmune diseases like rheumatoid arthritis at a much lower dose than for cancer.
Oh Granny, you are preaching to the choir on methotrexate (MTX). I went on it when I finally was diagnosed with psoriatic arthritis (PsA). I was on shots ( I gave them myself in my gut) of MTX for a couple of years...I honestly can't remember how long. I started having visible blood in my urine and as much as I protested, they did nothing for over a year. This got worse and worse but I was not having renal labs done at the time. At some point my GFR went from normal to crash and burn. This is what my rheumatologist said AFTER he had seen a reading from a lab taken six months prior. My A1c also went from 5 to 13. Helloooooo... The took me off MTX and my GFR improved only to 41. I was sick all the time on MTX and since it was my first drug for the PsA, I had no idea how little it was helping. I have been on so many different drugs for PsA and they have all caused some problem of some sort except...Stelara, which I am on currently and have been in complete remission for over two years. What scares me is at some point, it too will stop working and then it will be another trial to find something.
I'm just now discovering some of things that I was never told 20 years ago. I do not know what my labs were then except the ones pertaining to the autoimmune disease that was in question. The questions that are in my mind now is that some of Thses meds may be responsible for the lower for (in the 60s) and called normal because there are no other labs supporting active kidney disease present at this time. I was not even aware that there is a scale to classify the stages of kidney disease yet I'm classified as a stage 3a but lab tests are being called normal. I guess this means after kidney damage, if there are stable blood tests, wether there is evidence of kidney damage via a scale of stages, then it becomes normal. I'm only trying to understand something that's confusing. I'm certainly looking for a reversal of a gfr of 53 and I'm greatful there's no proteins showing. What happened 20 years ago I could not tell you because the medical profession told me very little even when I questioned. I know for sure that when lupus attacks an organ it leaves scar tissue, damage. I have evidence of that in my lungs via xrays. At the time I didn't realize what methotrexate,(which was given for joint involvement), could do over a period of time to kidneys, and it's becoming more clear now. What I'm trying to say is I have had a decent remission for 18 years with small flares that were caught early. At this time, I do not take any meds for the autoimmune disease. But if the lupus is becoming active again I may have to go back on these meds. All in all it looks like the cure is worse than the disease. These discussion groups are so helpful for me to start understanding the pros and cons of kidney disease and how other factors play in the picture. Thanks for your input.
I will send you an email soon to catch up. I thought this was serendipitous that you just posted to this older post. Why??? Because as I predicted 5 months ago that the Stelara would fail..... it has. so now, I have no protection for the PsA and I can't take anything for the pain. I am not having a good time.... I will be going on Orcenia, which is another new biologic but it can takes weeks or more to get the prescription through and months for this drug to kick in. I am so bummed because Spring is my favorite time of year and my busiest.
We'll talk soon,
Honestly, I didn't notice the time constraint of the post as I have been on and off the site and try to respond when something jumps out at me. Lol.
I feel badly that the Stelara didn't do the job we hoped it would. Please email me and catch up; funny as I was thinking about you the other day, but have been so caught up in the research for the book Dave and I are co-authoring and some health issues with my brother, that my communications have fallen by the waste side.
Looking forward to catching up..
Just know that I am in your corner!
PS: Spring is my season as well! Will enjoy it together. PMA!
Agree with Bassetmommer. With autoimmune disease we often have "flares" where our bodies become inflamed. Inflamation causes kidney damage over time. It is important to try and keep flares at a minimum though it can be difficult. I have food intolerances, And Raynauds. When I have major flares, my GFR drops, then it goes back up over time. Not really sure how much scarring of my kidneys takes place each time that happens. I do know I have some scarring from the biopsy that was done 2 years ago. My GFR has fluctuated from 51 to 81 up and down then back up over the last 5 years, but I've only known I had CKD for 2 years.
So, its great you are pursuing an answer to your autoimmune issues because the more you can control it, the more you will save your kidneys.
I would not be too alarmed by the drop unless you see a consistent pattern of dropping. Yo very well could show an increase the next time you are tested.
Thanks so much for your supportive thoughts. I've been ever watchful because of SLE. Most of the time I have a symptom indicator, like the facial butterfly rash that lets me know I'm flaring. There are times though when I just start feeling funny then I find out that my heart is going nuts and my BP is up through the roof. Usually a course of steroids helps the issue. My kidneys, as far as I know, have not been involved. I've really been blessed By the Lord that I've had relatively good health for 20 plus years with lupus in decent remission. The one thing I've hoped would not happen is that my kidneys would get involved....and here I am....Thanks again for your supportive feedback.
I’ve been diagnosed with autoimmune also. However my GFR has been at 51 for many years and held there. My rheumatologist said for my age that was pretty normal, I’m 76. However in the last 3 months I’ve dropped to 45 and then 43 so I’m concerned. I have appt with my Rheumatologist end of Nov so I will ask her what’s going on. Let me know what your dr says
I just saw the Dr today. We are first going to try steroids. I believe I'm flaring right now, have had other symptoms. When the prednisone is finished I'm going to get another set of blood tests, a BUN and CREATININE. If they are out of normal range then my Dr is going to send me on to a specialist. I've not had problems with my kidneys in over 20 years after my Dx of autoimmune disease. My Dr. told me the results were not to bad. With my age and possibly something like(just an example), dehydration, could effect the eGFR. He told me not to worry. I'll update in a couple of weeks when I've got the labs back.
The kidney detox I would NOT recommend unless you consult your Physician first. It important to remember that when your gfr is low your kidneys are not working well and filtration of high concentrations of substances like the detox preparations may not be the best thing to try. (By all means check with your doctor!!) A kidney diet you can't go wrong with. There's a web site called DaVita.com that has diets and much information for kidney patients. If I'm not wrong there are RDAs listed to consult with for the best renal diet for you. Also there are some really good looking recipes, over 1,000, listed in DaVita.com. just please be careful using any detox preparations.
Thank you for info.
I am familiar with Davita - I plan to go visit their office nearby me - and also will attned a live class-
My purpose is to Prevent - from damage - before GFR gets too low- below 80. Specially for Diabetics - to avoid CKD .
I will check into Recipies - but NOT after damaage- NOT for Kidney patients.
If on LCHF diet- person must check on protein - not too have too much.
I am advocate of Diabetes Prevention - of Complciations, LCHF diet and exercise. I am planning to go to India soon - and have seminars.