Egfr gone up slightly

[Blackcat122]

In 2018 my egfr was 80. 2020 it was 62, June 2022 it was 58, and I was told I was stage 3a ckd. July 2022 stage 3a egfr 46. Two weeks later stage 3 b egfr 40. Repeat egfr this week following a month of strict salt intake it's gone up to egfr 48 stage 3a . I've now been told that's satisfactory no further testing required. I'm based in the UK and worried that I'm now being left to get on with it. Has anyone else felt like this

[rabbit01]

I am in UK too and found the kidney care in our NHS to be pretty poor. For me dialysis could have been delayed if they had acted more quickly. I was never given any medication and no dietary advice.

Regarding yourself, well a lot depends on many factors including your age and the cause of your reduced kidney function. Our kidneys naturally lose some of their abilities as we age and we can't do much about that. Unless you have some underlying condition like high BP or an autoimmune problem that's hurting your kidneys then there's not much the doctors can do. But thar said as you have seen quite a rapid decline I am surprised they are not continuing to see and monitor you.

However keeping well hydrated, eating a healthy diet with a reduced salt intake and trying to stay at a healthy weight with a normal BP are all things you can try and maintain to help preserve your kidneys.

[Blackcat122 in reply to rabbit01]

Thanks Rabbit01As you said finding the cause of the rapid decline would be the first thing to investigate, but apart from egfr and u and e blood tests nothing has been done. I thought possibly a urine test for blood or protein, or possibly a kidney scan to rule out any nasties.

I'm sorry to hear your story, I found the same as you that any information to help is not given and its up to us to research.

I'm 64, female, no high BP, so I wouldn't expect such a low egfr and rapid drop

[rabbit01 in reply to Blackcat122]

I actually changed health authorities as I was so fed up with my old one. I didn't even know it was possible but it certainly is. I am in South East England and was under one of the Sussex hospitals. I swapped to Guys at St Thomas which I found much better but sadly it was too late for me and I was already on dialysis.

If I had my time over again then I would have been more assertive over my treatment or lack of it! I had a lit of protein in my urine yet they never gave me anything to try and reduce it. I share your frustration.

[Blackcat122 in reply to rabbit01]

Such a sad story, as you say they don't seem to give much help until it's too late. I think so much more could be achieved through more education to the patient about ckd. I had to research the low salt diet and mention it to the GP. All I've found out has been through organisations like this, Dr Google, and I used to accompany an elderly relative with ckd on her outpatient visits, so I picked up some of the info from there. Would have taken more notice if it's known I was going to get it!!

[rabbit01 in reply to Blackcat122]

Yes your absolutely right. In my experience very little is done in the UK by the NHS to try and increase kidney function or to prolong the time before dialysis. Like you I learnt more about kidney health from the Internet and this forum than I did from my nephrologist. All I got from her was a blood test and a BP test every four months during a 10 minute appointment.

[Hidden]

Hello Blackcat122, I'm Larry in sunny Florida. In 2017, I was diagnosed with GPA which is an autoimmune disease and a form of vasculitis. It caused pretty much total kidney failure (GFR=8). I was in the hospital for 3 weeks, on dialysis for a year, and on other nasty drugs for 3 years to put the GPA in remission. I am very involved in my own health and yes, Dr Google plays a big part. My doctors love me for it. As you can imagine, I have done a lot of research regarding CKD. The two main causes of CKD are high BP and diabetes. There are people who are born with different forms of kidney issues and they generally are not treatable. Another cause can be taking too many NSAIDS for pain. Ibuprofen in particular will cause GFR to drop as we saw with my wife. She has hip joint issues and blood test showed her GFR dropping. When she stopped taking it, her GFR came back up. If it makes you feel any better, the primary care doctors (GP) in the US don't seem to get concerned about kidney function even though lab results show something is not right. Here, depending on the type of health insurance you have, you can ask your family doctor for a referral to a Nephrologist or some insurance allows you to go to whichever doctor you want to without a referral. I kind of get the idea that in the UK, the health networks determine who and when you get to see someone. Lowering salt intake is important and high salt intake will generally show up in swollen feet and ankles. There really is no "magic" medication that makes kidneys get better. There's generally a cause and eliminating the cause is one course of action. Have you had your lipids checked to see if your glucose and A1C are in range? That could indicate diabetes. Are your BP readings at a safe level? I hope I gave you some insight and feel free to ask me questions.

[Blackcat122 in reply to Hidden]

Thank you LlWegeners in sunny Florida. I've had bp checked 120/70 and been checked for diabetes. It's interesting about ibuprofen, as I was diagnosed with a frozen shoulder at Xmas and started taking 1 ibuprofen tablet daily, for a few months. Don't know if that small amount could affect egfr though

[userotc]

After noting the main comments here, I feel that I can now revert to stating that UK nephrologists are useless after doing this on here previously and being criticised by NHS lovers!

Mum's has never helped her but WE managed to get her eGFrR from 36 to 76 before it fell back to 46 last test. We know her neph will be OK with that as he was when it was 36. He stated it unlikely to improve from that then. So our challenge now is to get it back up there - naturally by returning to better hydration etc.

If unable to do this ourselves, we will seek a naturopathic nutritionist that specialised in ckd.

The summary of this is don't rely on UK medics, do what you can yourself but don't hesitate to contract a specialised, naturopathic nutritionist.

Good luck.

[Blackcat122 in reply to userotc]

Hi thanks for all your replies. In the UK unless you can afford to go private, you are dependent on a referral by your GP, and which tests they think you should have. Sometimes I get the impression it's all about cash nowadays, the GP practices are run like businesses and have to ration their money, prioritise certain things, ckd not seeming to be one of them.Thanks for listening to my moan!!

Take care everyone

[KidneyCoach NKF Ambassador]

Kidneyschool.org

[horsie63]

Other than the fact that we in the US have insurance the diagnosing of CKD early enough to do any good is hit and miss. Since I was doing ultramarathons I wanted to see if they caused any issues so after every race I had blood taken and tracked the results in a spreadsheet. I noticed my eGFR dropping in 2017 and brought it to my GP's attention. Got a referral to a nephrologist who told me "no big deal since I am small and an athlete the numbers don't mean anything. I believed him cause you know he's a specialist. Well I finally got fed up as the numbers kept going down and I got a second opinion. An ultrasound and biopsy later determined I had "severe arterionephrosclerosis, probably related to hypertension". Granted I thought any high BP readings at the doctors was white coat and so I ignored it but it was never extremely high. I did use NSAIDS in the past and my diet was horrid but I was never overweight and don't have diabetes.

It all goes to show that while docs have their place you yourself HAS to be the one in charge of your health. The amount of salt people eat is terrible and contributes to a lot of health issues. I'll not say everyone should go plant based but they do need to cut out the heavily processed foods. I'll not lie I did this to myself in that I knew eating McD's several times a week wasn't a good thing but I've changed my diet to be mostly plant based and have slowed the progression.

[Blackcat122 in reply to horsie63]

Thankyou Horsie63I agree you have to take control of your health. I've reduced salt considerably so that may be the reason for my slight egfr increase. The thing bothering me is my GP seems totally unconcerned about my test results. I've complained to him about various symptoms but he says they can't be ckd related, sometime feels like you banging your head against a brick wall!! Good news you have your symptoms under control now and have slowed the progression

[Hidden in reply to Blackcat122]

Horsie63, totally agree on taking control of own health.

Also with Blackcat22 re banging head against a brick wall. Drs in Australia are just the same re not properly addressing kidney problems.

I've had high Creatinine readings from 2014 but no Dr said anything until I visited a new one at the beginning of the year.

[horsie63]

Seems an uphill battle sometimes. I have a good GP in that she listens to me and has no problem referring me to whatever specialist I might need. I fear the day she retires. The nephrologist I have now also listens to me but since I'm working to get on the transplant list I'll have to switch to the transplant teams nephrologist and it'll be like starting all over. At least now I know all the questions to ask. Course I'm also a pain in the ass when I want something. I write down all my questions before the appt and go over each one.

[Blackcat122 in reply to horsie63]

Good for you Horsie63. Sometimes you have to be a pain in the ass!! It's not usually my style but I'll think about trying it at my next gp appointment

[horsie63 in reply to Blackcat122]

I never was either I'd just go to the appt and 10 min later was out the door with no real explanation. As I've gotten older I've gotten less patient with the bullshit. Typically make an appt for a certain time and an hour later get seen, blah blah and 10 min I'm done. No more, my time is as valuable as any doctors. I'm paying for that visit and they damn well will answer my questions to my satisfaction. I keep getting surveys for after and they don't want bad reviews. I'll be polite but I'm not budging without answers.

[Blackcat122]

Next one for me is 13th September. I'll let you know how I get onTake care everyone

[Darlenia]

Please be very careful and intentional about your diet changes - they should be based on your lab reports. I say this because electrolytes, including sodium and chloride, should always be kept in the normal range. If they are out of range, cardiac and other issues can develop, including further kidney damage.

[Blackcat122 in reply to Darlenia]

Thanks DarleniaI'm keeping my daily salt levels to 2.5g daily, apart from that I'm eating more fruit and veg. The problem is, I haven't been offered any more tests or procedures, so I'm not sure if this is correct

[Darlenia]

Maybe you can get a copy of your lab reports and see how your electrolytes and other factors are doing. They're generally flagged if they're outside the normal range. In the US, we can also get blood drawn for basic lab panels at local labs without a doctor's request. Perhaps this option is available in the UK too. It's really nice to have!

[Blackcat122 in reply to Darlenia]

My last blood test result from 28th July showed serum urea was above high reference level 8.4mmol/l and creatinine was above high reference level 122umol/l. Sodium and potassium normal

[Darlenia in reply to Blackcat122]

I can see your dilemma. It would be nice if your doctors could determine why your creatinine and serum are flagged. As others have indicated, increasing hydration and curbing protein intake is probably a good thing to do since those things do affect those numbers. Your sodium intake is fine. If possible, I would return to my primary doctor, since it's probably difficult for you to see a nephrologist, and ask him for his thoughts regarding this and your earlier use of pain meds. I would also request another set of labs three or four months from now. Nothing ventured, nothing gained!

[Blackcat122]

Yes. I agree totally. Hopefully my GP will agree! Thanks Darlenia

[barbara55109]

If your only tool is a hammer, then everything is a nail. Since there is no magic pill, no operation, to "cure" or even treat CKD doctors don't know what to do until you hit the later stages where there are some treatments. Clinical medicine - what you get when you go to the Dr. - is decades behind medical research. The major medical research shows that a plant based diet can slow CKD progression. My nephrologist says he doesn't even bring it up because so few Americans are willing to make those kind of major dietary changes. If you know the cause of your CKD then you can focus on dealing with stabilizing those conditions, be they high blood pressure, diabetes, medications, NSAIDS, whatever. For me it was dehydration. Regarding more tests and procedures. Our eGFR fluctuates greatly over time, so doing a daily test really doesn't tell much. I get my eGFR done once every 3-4 months. I had a basic ultrasound and CT, which found a small cyst, but ruled out other CKD causes. We discussed having a kidney biopsy, which can show some of the rarer causes of CKD. Since we were confident my CKD came from 30+ years of chronic dehydration (I have no colon and have a high output ileostomy) I didn't get a biopsy. I did get a second opinion though. Going on anti diarrheals, cutting back on caffeine, losing weight and getting my A1C down, I'm not at 25 from a low of 7. I have a fistula, but haven't started dialysis - to the surprise of the medicals. I can't switch to a plant based diet. Fiber causes ostomy blockages. I've been holding on for 3 years now. Only 5 or more years until I can get a kidney transplant. Please don't hate on the NHS too much. Here in the US if you are uninsured you get no diagnosis or treatment. You just die. For the richest nation in the world to have infant and maternal mortality rates below that of developing nations is so sad and infuriating.

[Blackcat122 in reply to barbara55109]

Hi BarbaraI'm sorry to hear your story and ckd journey. You've had many things to overcome. Sorry if I gave the wrong impression about the NHS, I do appreciate it, compared to other health systems. All I'm asking is to be given 3 or 6 monthly blood tests to check my egfr and maybe an ultrasound to check all is ok and some diet advice. I'm an advocate of helping yourself to better health, but just need a little help. Take care

Susan

[nellie237]

Hi Blackcat,

I am in the UK and had acute kidney injury last year due to BP meds (eGFR dropped from 85 to 29 in about 10 days, Fortunately recovered). I've read a lot since then.

If you look at the standard traffic light coloured ckd stages..............albiminuria (ACR) can alter the stage, and I agree with you that you should ask your GP to test. My GP didn't suggest this either. I asked during my last appointment, and his response was "We usually only test diabetics for this" to which I replied "And you should be testing hypertensives.............and more importantly KDIGO (Body for worldwide guidelines on CKD) recommend testing as standard with ckd.

Youtube: KDIGO-ISN Webinar on Chronic Kidney Disease Early Identification & Intervention

Nov 2020. at 21:51 mins Discussion re medics not testing ACR when they should be.

I didn't get offered a scan by my GP, but slap bang in the middle of the AKI I had a Gastro appointment for a coeliac dx a few months prior, and I was so poorly that the Gastro ordered a full abdominal scan.

Has your GP checked your Iron,B12,Folate and if you can get it Vit D? The AKI leeched my Iron and red blood cells over the following 2 months.

[Blackcat122]

Hi NellieI'm sorry to hear you've been so poorly. I've had full blood count checked recently and u and e. All ok apart from high creatinine and urea levels. I agree with you that other tests should be offered just to rule things out. My doctor just gives me the impression that it's nothing to worry about, as if I'm making a fuss over nothing, and he's still adamant that my fatigue, itching, getting out of breath and muscle spasms can't have anything to do with ckd. Sometimes you feel like a hypochondriac!!

Take care Susan

[Hidden in reply to Blackcat122]

So sorry your dr is not supporting you, Blackcat122. It almost seems as if he is gaslighting you.

[Blackcat122]

Hi WunderkindI think it's the policy of the NHS in the UK that only stage 4 and lower gets referred to a consultant. Saying that, apart from blood tests to determine my egfr I haven't had any other tests. Next one is February 2023 for egfr, but only at my insistence, GP wanted to leave it for a year, but I said no, 6 months. So now I'm left with an egfr of 48, last tested August, don't know if it's getting better or worse