My annual blood test for CKD3a status, a condition I seem to have had, occasionally dipping out of (ie above the 60 mark) for 12 years, has leapt from 55 last year to 63 this year. It's been under 60 for 8 years.
So, wondering why, and if this means I have improved to CKD2? All I have done this last year is to escalate my dislike of eating meat, and stop salting my food, except for fish and chips night. Creatinine is 78 and was 89 (above reference) last year. Serum urea was down from 5.8 to 5.1.
I thought living with CKD was a matter of managing decline? I am 70 now, so 58 when it first showed up.
Comments welcome, and thank you.
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Trill
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Cutting back on red meat and salt will do it. I try to keep both to a minimum and get my fish and chips unsalted, don't taste as good but the kidneys appreciate the choice.
If your labs for GFR went above 60 then you were at Stage 2. However, that is not significant unless you remain there for several consecutive labs. What you should concern yourself with is where your GFR average is. Each lab is but a snapshot of the time the labs were drawn. When I was diagnosed I had a GFR of 32, which is Stage 3. Since then I've gone as high as 65, Stage 2, but in the 33 months since the diagnosis, my GFR average has been 51. That's a healthy way to look at it.
From some of what you have said I'm guessing that you are in the UK. That somewhat explains why you are only having yearly labs. I'm in the USA and have labs run every three months. Sometimes there is an overlap between the labs run by my PCP, nephrologist, and urologist. My last GFR was two weeks ago and my GFR was 50.
Your serum creatinine is still high at 5.1. Be careful with the exercise and meals you eat in the two-to-three day period prior to your labs being drawn.
I can't speak to your other numbers since you didn't include them. Salting your fish and chips, under normal conditions may not be a good thing, but you didn't post your sodium numbers. How are your phosphorus and potassium numbers?
Finally, managing your CKD is all about slowing the decline of the disease. The best hope is for the GFR to increase while keeping the sodium, phosphorus, potassium, protein, and calcium, as well as the creatinine within the normal range.
If you are in the UK and you are only allowed to have yearly labs, do everything you can to help yourself maintain the health of your kidneys.
I am in the U.S. with stage 3, but only have annual labs. For the first few years after I was diagnosed, my nephrologist had me doing labs every three months, then six months, and then, since I was stable, he said he only wanted annual labs. I was under the impression that the frequency of labs depends on how stable you are, so I am wondering why the assumption that the UK only allows annual labs? Just curious.
Each lab draw is a snapshot of your status. Doing them only once a year is not helping you if the snapshot draw was off. However, if you are comfortable with that, accept it. I have the two leading causes of CKD and between the doctors on my Care Team my labs are done about every three months and I've been okay. I guessed he was in the UK because he is also a member of a UK Thyroid community, and from other folks who post here that is what they have stated as well. It's not a statement of fact, hence the word guess.
Thank you for explaining about the frequency of appointments! That really scares me now, since I thought I had a good nephrologist. I had gotten a second opinion when I was first diagnosed, but I don’t remember if I checked back with the second opinion nephrologist to see if annual labs were enough after my nephrologist reduced the frequency.
Another question: I am seeing people refer to stages as though you can move backwards (like from 3 to 2). Is that possible? I thought once you lost function, you couldn’t get it back. I guess I need to go back and do more research, but I would be grateful to hear your response. Thanks!
You absolutely can go from stage 3 to stage 2. I've done it twice. I didn't stay there long but that isn't the point. Your true GFR is best determined by the average of your labs. I started at diagnosis with a
32, but more importantly in all of my labs since then my GFR average has been 51. That's a true indication of my kidney function.
You are the head of your Care Team and if you aren't happy with a doctor, make a change. There are times when folks are hampered in doing that by their insurance. That's when you have to make a tough choice. My thoughts are that a doctor who won't be honest with you and act accordingly isn't much help. I hope that helps.
It's true. Annual. What happens if you get worse I don't know but at Stage 3 you don't get a nephrologist referral either. So you guys annd gals are crucial in your knowledge - and just think hoow you are saving our NHS resources at this perilous time! Thanks.
I am in US, 78 and now get labs every 6 months as my eGFR has improved. It is difficult on Medicare to get referral to a nephrologist until you reach level 4.
I live in the United States and I have Medicare and I have chronic kidney disease stage 3. I never needed a referral for my nephrologist. I see him every 3 months. I have had other tests done, besides blood work, like ultrasounds to rule out kidney damage. I don't understand your comment about needing a referral needed for Medicare and only if you had stage 4 kidney disease. Stage 4 is pretty serious, at stage 4 your doctor needs to start preparing you for kidney dialysis or a kidney transplant. At stage 5 is when you no longer have a chance.
Good to know. I had asked Medicare about it and that was reply I got early 2019. They may have changed that rule, or person who gave me advice might have been wrong.
Thanks for all the helpful observations. Serum Creatinine was 78 and refs are 45-84. Serum Urea was 5.1 and refs 2.5-6.7. Just to correct and amplify any confusion (another of which is that I am a she not a he!). And, yes, I live in Lockdown UK.
What do you mean by being careful 2-3 days before lab tests? I would have thought an acccurate picture would be better obtained from not changing what you do?
Serum Potassium 4.5 (refs 3.5-5) and thhat has remained stable all these years,
Serum Sodium is 141 (refs 132-146) also pretty stable ie no change of significance.
No phosphorus tested. Nor calcium.
And you won't get any more from the NHS especially now!
Some folks do a heavy workout twice a week or have a bigger meal on Sunday, and some cheat a bit with a snack or special meal. When I spoke to my nephrologist early on he told me that it was crucial to maintain my normal routines regarding meals, exercise, hydration, etc. In the two-to-three days prior to a lab in order to maintain the best possible "normal" routine.
Before I knew that I usually did a long bike ride on either Saturday or Sunday with a group of friends, and my labs were done on Monday.
I can't make that decision for you. In my case, I prefer a specialist in each area. I was seeing a urologist before I learned about CKD. Each of my doctors knows everything about my health issues and I'm more comfortable in dealing with a specialists' expertise and in my coordinating the medical decisions with regard to final treatment.
The eGFR will vary slightly between tests. All depends on what you have had to eat before the test, any exercise you have taken, how hydrated you are. Also the way the lab determines the amount of creatinine is using a colour change reaction and comparison to a standard chart so slight variations can occur in the assessment of this.
An increase in GFR is always better than a decrease and in your case, it took you from Stage 3 to Stage 2. I realize that you have to make it work within the limits of your NHS program but your GFR average over time is the best way of seeing where you are. Your kidneys are working hard every hour of every day but if you can only test yearly, you must be especially careful.
I have a 30 year history of high blood pressure, and my creatinine was hovering around 1.25 for the last few years. In Feb of 2020 it was up to 1.85, gfr 28 and BUN 39. I did some research and learned that a vegan diet can be beneficial, since creatinine comes from animal protein. Labs drawn only three weeks later revealed creatinine 1.25, gfr 45, and BUN 16! This way of eating works.
What IS this BUN? I don't seem to get tested for it. Are you talking serum creatinine rather than creatinine? I think there is a difference as my serum creatinine was 78 and within refererence range whereas yours is way lower. I don't have high blood pressure. You have done very well.
I agree with vegan, and could give up all meat easily. I have a little chicken (I wouldn't if I wasn't marrried) and I do have fish. But I would not like to give up my couple of eggs a week, milk, and small amounts of cheese. Life's miserable enough with you being told you mustn't have too much to drink etc. No salt on chips? At aged 70 I'll take my chances once a wek.
Yes, it is serum creatinine. BUN is blood urea nitrogen. Urea is a by-product of protein digestion made in the liver. Sounds like you don’t eat much animal protein. Best wishes!
I followed the renal diet and recommendations for CKD stage 3. My gfr went up to 60 from 50 in 6 months So I'm borderline stage 2 now and will stick to every single rule.
Where did you find the renal diet and recommendations for CKD? I am recently diagnosed as CKD, STAGE 3a. My Nephrologist gave me some dietary recommendations. However, as I have googled "kidney-friendly diet" I have found huge discrepancies between what SHE says is "kidney-friendly" and what others (like DaVita) says is "kidney-friendly" ... She might say one thing is good and Davita or someone else says it should not be eaten, or vice versa. Examples of these contradictions are: asparagus, avocados, eggs, yogurt, squash, lettuce and soup, etc. that contain a lot of water; breads, nuts .... In fact, she says absolutely NO beef or pork (only poultry or fish), NO breads, etc. I'm just so confused!
Sodium, potassium, and sodium are hard on the kidneys. DaVita takes that into account. The byproducts of metabolizing animal protein is hard on the kidneys, especially pork and beef. Limit the cooked portion of meat to 2oz. If you're building muscle, have multiple servings of protein from different sources and spread those out over the day. Lots of water helps tremendously. If there's a radical drop in gfr, besides consulting the nephrologist, go vegan for awhile. That also helps with high blood pressure and losing weight.
I am reading Lee Hull's book. He is a man living with CKD like all of us. He has had it for 22 years and has researched and researched and come up with his own food recommendations. All plant based to reduce strain on the kidneys. Do their work - as they now can't, is his motto. his book is a text book all 500+ pages of it ! He says that doctors recommendations are largely based on research done in the 50's and 60's and that so much more has now been undertaken and properly evaluated. He cites all the research papers in his book if you have the time and inclination to read them !
Hello Trill! I always love to hear good news! Kudos to you! You seem to have done all the right things. Are you drinking more water? Staying properly hydrated is always beneficial. I know it helps in improving one’s GFR. Cutting out red meat is also a good thing, and just lowering the amount of protein in your diet can be easier on the kidneys too.
Removing any harmful medications you may have been taking is sometimes a big help as well. Whatever the reason, this is a blessing. Glad to hear you’re much better! Keep up the awesome work! All my best to you, and God bless. 😊👍👍
My gfr went from 70s to 90s to 115 in a 1.5 year period. I had poor diet from 90 to 115 still it improved, which is strange. I have heard gfr is just how your kidneys are functioning at the time blood was drawn, so relying on just 1 value does not give the complete picture. There are also other parameters which indicate kidney health like UACR,electrolytes,microalbumin. You might want to look up into that too .
None of the following is s medical or medical-nutrition advice. Consult your doctor or renal nephrologist before making any changes to your behavior, diet, or supplements.
I steeply reduced the amount of any animal protein including far fewer eggs, dairy) while ensuring I got well-enough plant protein and proper supplements. Some plants have high phosphorus, but animal protein releases all it's phos during digestion. Plant based foods, a significant amount of nominal phos, stays bound to the plant and passes through, not released into the bloodstream.
GFR isn't a measure of viable kidney TISSUE. It's a measure of how well that kidney tissue works to filter blood. First, eliminating things that put pressure on kidneys (ask your doctor, this is NOT medical advice but generally- animal protein, phosphorus, salt especially for folks with higher bp- as can excessive excercise... etc.) by reducing the work and nephro-taxing substances, improve FUNCTION.
Also GFR is usually estimated indirectly. But even a direct test - a 24 hour urine collection eg- the numbers have a wide variability, and it's multiple tests over time that give a better indication.
But if one makes a renal-protective change in diet or behavior, it's possible for some to actually see SUSTAINED increase in renal function. I'm shooting to keep my new 'low' low over the long term!
Congrats...it's diet absolutely. Keep it up me dear. I think people concentrate too much on the GFR number when us boomers get up to the age of sage (raging argument does it decline with age or not Hmmmm). Enjoy the victories and don't sweat the small stuff: again be proud of yourself...I am. I went full raw fruit vegan...did miracles.
I was interested in your comments. The change in my GFR is nothing like yours going from 25 to 26.5 but I too thought it was a one way street. Im not on any medication as I've not seen a specialist yet and not had an ultrasound. So the only thing I've done is follow the eating plan cutting right back on animal protein and monitoring rigorously my portion size as well as other directions. Im encouraged to continue now.
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