I hope everyone are keeping well. I’ve recently been having blood and urine tests done as my Doctor was concerned that my GFR was dropping 5% per month. I was 57 ml/min /1.73m2 since last year and then this year it went from 57 to 52 to 47 mm/min/1.73m2. My serum creatinine has increased to 111 umol/L. My GP is now referring me to see a Nephrologist but NHS can take months to get an appointment especially during this Coronavirus Pandemic. Is someone else the same as me or been through the same issues and if so how did you deal with it? Thanks
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Sawita
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Hi, I'm in the USA and can't offer you an insight into your dealings with the NHS.
As far as your GFR is concerned it is specific to each blood draw. The best GFR measure of how your kidneys are functioning is the average of your readings. Your 57 and now 52 will be averaged to 54.5. When I was diagnosed almost three years ago my GFR was 32. Since then, with the help of my Care Team, a kidney-friendly meal plan, controlling my other health issues, exercise, medications, and learning all I could about CKD, I managed to lift my GFR up to 65, but more importantly, I've averaged a GFR of 51.
Without a doubt, the most important aspect of slowing the progression of CKD is having a good meal plan and sticking to it. It's more of a lifestyle change than a diet so be sure to ask to meet with a renal dietitian to develop a specific plan to match your wants and needs. That and a good exercise regimen, approved by your doctors, will help you control your creatinine.
Thank you for getting in touch. Well done for managing to change your lifestyle. Whilst waiting to see the Nephrologist I’ve focused on improving my diet and lifestyle. I hope you don’t mind me asking but what things does your diet plan have and don’t have? Also, what symptoms do you have? I hope you continue to make a speedy and full recovery.
My cholesterol is fine and my Blood Pressure is low / normal. I don’t drink and hardly have salt in my meals. I try to make my own meals rather than relying on processed/fast food. I’m focusing on losing weight and have lost a stone in the last 3 months. Yet I’m still suffering with swollen hands/feet at times, I’ve started feeling itchy, I’m constantly exhausted. I even had black urine once a few days ago. Losing 5% GPR seems a lot to lose every month, is this normal? Thanks
Hi, part of my response was eliminated and I didn't catch it. I discussed your first two GFR numbers but when I did the average for the second and third it was erroneously erased. Your 52 and then 47 brought your average of the three to 52. Again GFR is but a snapshot of your function. There is nothing wrong with an average of 52. Some of the other things you mentioned could be causing your numbers to go down and itching issues.
There is no one size fits all meal plan. The purpose of bringing your labs to the RD is to design a plan specifically for you. For example, I'm limited to 8 oz. of protein each day. I get most of it from seafood and poultry. You can opt for vegan or vegetarian when you speak to the RD. I also have to watch potassium, phosphorus, and sodium intake.
I don't eat out so I don't have to worry about the restaurant's kitchen. Fast food is not on anyone's meal plan for the same reasons.
If you are getting too much phosphorus in your meals that could be a possible cause of your itching. The two leading causes of CKD are diabetes and high blood pressure. I have both and both are controlled. The diabetes is controlled by my meal plan and exercise. The HBP is controlled by medications as well as my sodium reduction. I use herbs and okayed spices for flavor and avoid any added salt.
For recipe ideas I use the davita.com website. I take none of their recipes at face value. I look over the nutrition for each one and make adjustments for my personal wants and needs regarding sodium, potassium, and phosphorus.
Even with reduced kidney function, your body does require some sodium, potassium, phosphorus, and protein, so do not attempt to limit all of them from your plan. Just get your numbers down to within the reference range your lab uses and see how your numbers look then. Talk to both the nephrologist and RD about making major/minor adjustments as the lab results indicate.
I met my RD shortly after my diagnosis. We had two in-person meetings and since then we communicate via e-mail and phone calls for any changes I need to make. Minor changes I've learned do on my own over time.
I was diagnosed with 17% eGFR five years ago. I started peritoneal dialysis last October. I am in South East England so I have had plenty of experience dealing with the appointment system for the NHS!
One thing to note is that your eGFR is derived by your creatinine level. It is just a mathematical formula that you can Google. Nobody can measure kidney function directly so they use creatinine which increases proportionally as your kidney function decreases.
As Mr Kidney has explained it is the trend / average that is important. Don't worry about a couple of blood tests in isolation. You can get different results on the same day just by what you eat, how hydrated you are and how much exercise you have done.
Thank you for your message. I’m so sorry to hear about your GFR being 17%. That must have been extremely scary. How often do you have to be on the dialysis if you don’t mind me asking? Do you have to keep going to hospital or do you have dialysis set up at home?
It’s worrying me as I don’t know why my GPR is drastically dropping every month and why my creatinine is creeping high. As you know NHS can take months for an appointment and due to the pandemic appointments are being cancelled. I’m concerned by the time I get an appointment I would be at Stage 5. How did you find out your kidneys were failing? I don’t understand why blood test and urine test results aren’t normal but my ultrasound scan showed my kidneys were fine. I just feel alone going through this on my own without anyone else understanding my fear which is why I joined this forum.
Yes, it was really scary especially as I realised that CKD is non-reversable and I was at late stage 4. I was diagnosed out of the blue after I had a routine blood test to check my cholesterol level. Once I was diagnosed with CKD by the GP, I paid to see a nephrologist privately. At our first meeting he was so laid back and this should have been a warning sign to me to go and find enough one, but I trusted him and thought as he was not too bothered about anything that I must be fine.
All he did was organised ultrasound and later MRI and my kidneys looked fine. The ultrasound and MRI were done under the NHS so of course I had to wait weeks for an appointment for each. Ultrasound and MRI showed my kidneys were fine too. But all the time my kidney function was continuing to drop.
I changed doctors to one at the NHS and the new one was equally useless. She concluded that my kidney disease was probably due to inflammation caused by my own immune system or was as a result of antibiotics I had been given for a chest infection.
Personally, I don’t think there is anywhere near enough effort to try and investigate and slow down CKD. I could have been given steroids, immune system suppressants or at the very least blood pressure tablets to try and control the protein leak which does further damage to kidneys. I was never given anything. Despite asking. It was always "Well go home and lets see how you are in 4 months"
I spent five years living from blood test to blood test and getting myself continually upset as my eGFR decreased. I worked full time until I got down to 12% and by that time I was feeling like crap and my whole life was absorbed worrying about my kidneys. I broke down and wept one afternoon at work. Everything had just got on top of me. That is another thing. Not once was I asked by my nephrologist how I was feeling or where my mind was at.
I managed to slow down the progression as best I could by eating kidney friendly food and just looking after myself better and following the advice on this forum. I have nothing to thank the NHS for when it comes to my kidney care. They clearly had written me off from the start and consigned me to the dialysis queue from the first meeting.
When I got down to 7% I started home dialysis which is 4 times a day. Each session takes about 45 minutes including setting up and putting away. For the first time in over 5 years I feel that I have some stability back in my life. I also feel a lot better than I did before I started.
This group has been of great support and I have made some good friends here and there is so much great information freely provided by the group members. You certainly are not alone when you are part of this group.
Wow I’m so sorry you’ve gone through all this. I totally feel your pain and scare and feeling let down by the doctors. It’s ridiculous that they do nothing until it’s too late. This is what’s worrying about them doing to me.
Just like yourself my ultrasound scan was showing my kidneys are fine. I’ve made an appointment to see a Nephrologist with BMI Healthcare privately on Thursday.
Has anyone tried Ayurvedic medicines?
Nothing has been mentioned to me about food and drinks, are we allowed to have Soya milk and beans & lentils?
Well let us know how you get on with BMI on Thursday, that is a great idea. Regarding what you can eat and what you might want to avoid then it all depends on what your other blood readings are. Every person is different. For example even when I was down to 7% eGFR my kidneys were happily processing phosphates and potassium with no problems at all. But then you have other people like Mr Kidney who has a lot more eGFR than me but needs to watch his potassium, phosphorus, and sodium intake (mind you we all need to watch our sodium intake!)
That is why it is worth seeing renal dietician which your kidney clinic will certainly have. I was not even made aware that my clinic had such as facility, the nephrologist never even mentioned it! It was purely by chance I was in the waiting room one day and a nurse asked me if I was here to see the renal dietician! I was furious when I found out that I had not been referred to that department.
A good renal dietician can go through your lab results and highlight what diet would be best for you. There are also loads of online resources and some good recipe ideas on the Davita website which is davita.com.
In general reducing salt intake is a good starting point. Keeping yourself hydrated with good quality old fashioned water is a great tip as well. Red meats are harder on your kidneys than say chicken breast and fish. Beer is thought to be harder on kidneys than wine. Obviously if you do smoke then try and pack them in. It will take a while for you to understand it all but over time you will do.
Thank you so much, every little helps. Will keep you guys posted about my appointment.
I asked my GP about seeing a Renal Dietitian but he said because I’m hardly eating he doesn’t see why I would need the dietitian but his referred me to see a Nephrologist so was going to ask them.
It’s actually quite frustrating that the doctors don’t really help until it’s too late.
Even if ur gfr is dropping how r ur other numbers also nephrologist told my husband to worry when he has protein in urine. His numbers keep yoyoing but no protein so he’s good for another 10 years hope this helps.
Hi Olivia, thanks for getting in touch. That’s great news to hear about your husband.
My GFR is 47 ml/min/1.73m2, my serum creatinine is 111 umol/L and urine creatinine is 27.15 mmol/L. Does this mean I have blood in my urine?
Last week one of my pees were black/brown like the colour of coke. This really freaked me out but it only happened once. Has anyone else experienced this?
It could be blood or did u eat beets? Best thing is to go to the doctor and get it checked out? They can do a urinalysis with a dipstick and also send it into pathology to get a microscopic urinalysis it would only take a day or two for results. Also kidney stones and urinary tract infection causes blood in urine but honestly best to get it checked by a medical professional. Good luck
Thanks Olivia. I didn’t eat beets. To be honest I hardly eat a child’s portion in a full day. Mostly eat veg over meat. I’ve managed to get an appointment privately with Nephrologist with BMI Healthcare just for peace of mind. Thanks once again for messaging me. All the best x
Hello Sawita! Yes. I’m actually going through a similar issue right now with high creatinine, RBC and urea.
When I did some online research recently, to get some ideas on how to lower creatinine levels, what was suggested is to limit your protein intake (red meat, chicken, pork, fish, cheese and dairy, whole grains, beans and legumes, and nuts and seeds. This also includes any protein powders, bars, etc.)
Also, limit or omit completely, any weight-lifting exercises, as this type of strenuous exertion tends to release creatine into your bloodstream, thus raising your creatinine levels. It also recommended some light cardio exercise (such as walking 30 - 40 minutes or so, once or twice daily.)
And drinking a fair amount of water daily also helps to flush your kidneys and system. If you’re unsure of how much is the proper amount for you, seek your doctor’s advice on that. It can differ for everyone. That’s about the most we can do naturally on our own, to try to decrease high levels of creatinine.
I hope you will find these few tips helpful, dear. Also, if you wish to look into it further, just type your query into the Google search engine. I’m sure there are plenty of different sites that could provide more information on that.
I wish you all my best! Please keep me posted on how things come along! Take good care of yourself, and God bless. 🙏😊👍
Hello again, Sawita! My apologies, I forgot to mention one more tip to decrease high creatinine levels: Try to incorporate more high-fibre, low-potassium fruits and vegetables into your diet, as the fibre is helpful in lowering creatinine levels as well. Good luck, dear! Til next time...Bye for now! 😊👍
Hope you’re keeping well. Thanks for all your kind support. I will definitely bear everything you’ve suggested. I hardly eat a child portion as a full meal and a portion of fruit salad. I’m drinking more water now. I hardly have meat or dairy in my diet but I will avoid it all together and see if my results mid June improve.
Will keep you posted. Stay safe, take care. God bless you too x
I hope everyone are well. Sorry I didn’t get back to everyone yesterday regarding my appointment with a Nephrologist. He was very good and spent ages going through all my issues. He said I have definitely got Chronic Kidney Disease Stage 3 but the way my GFR is dropping 5% every month he said I fall between Acute and Chronic. His arranging more tests to be done to rule things out. Because I’ve been deteriorating over the last 6 months and during this time I’ve had a DVT, Fibroid in my uterus and suffer with fibromyalgia he is hoping that possibly the fibroid it blocking’s access to the kidneys or my Endometriosis which I’ve suffered for 18 years has grown and blocked access to the kidneys. I guess I just need to be patient whilst more tests are being arranged but everyone did say I’m doing the right thing going privately rather than NHS as by the time I’ve managed to get a consultation appointment with the NHS I would have already had further tests done and hopefully already be treated for it.
Oh! Also, doc said that I don’t need to watch what I’m drinking and eating but just need to be sensible. It’s because my BP is fine and don’t suffer with diabetes and other results are fine. I hardly eat a small child’s portion once a day anyway so I’m not at huge risk with food and drinks.
I do feel lot more relaxed now I’ve spoke to a specialist and things are getting done about it.
What do you all think?
Hope everyone are keeping well and enjoying the sun. Take care everyone x
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