Consistently Low GFr

[donnadb040]

My GFr has been between 43 and 64 for over 8 years and no one brought it to my attention! I discovered it on my latest blood work on which creatinine was elevated as well. I was also anemic. All indicators point to stage 3 renal disease. US/KUB was normal. Why can I not get anyone to take me serious and find out what is causing this??? I am only 50 years old and according to EVERYTHING I've read, it IS serious! Any suggestions or comments would be appreaciated.

[jaykay777]

Donna DB -- I understand that you feel no one is taking you seriously, which is something that makes me angry when it happens to me. Which people are you talking about, your primary care physician, a renal specialist or ??? Perhaps they feel your test results are within a normal range. My GFR has remained at 60 for the two years since I was diagnosed. My renal specialist has not recommended any changes in my treatment, possibly because I am 86 years old. Your doctor may feel that your relatively stable condition doesn't warrant dialysis or transplant. Ask your doctor what plans, if any are being made for you.

[donnadb040 in reply to jaykay777]

I am referring to my urologist! I can SEE my labs and my 24 hr urine test results online on the portal so I KNOW that they are not normal and have not been for some time now but he just blows it off as if it's nothing! I am anemic, elevated creatinine, Gfr of 43 consistently over many years and a low creatinine clearance rate. He won't take this serious at all! I am in the process of TRYING to get him to refer me to a nephrologist, if, for no other reason, than for someone to explain all of this to me and not just blow me off!

[jaykay777 in reply to jaykay777]

Donna -- Although I can't generalize about urologists, I can tell you that my urologist was equally as useless as yours. When my primary care doctor told me she I had kidney disease, I made an appointment with my urologist, not knowing that I should have contacted a nephrologist. The urologist did an ultrasound of my kidneys and told me they are fine, "except for a benign growth on the top of one. That growth will still be there when you die in 300 years." That's when I learned I should consult a nephrologist. I feel I am in good hands with her and that I learned a lot about handling my kidney disease by having a session with the renal nutritionist she recommended. I hope you will get the referral you requested.

[Celtic]

Hello Donna, I can't believe that no-one has contacted you about either your anaemia or your low kidney function, especially once it reached eGFR 43, which is classed at CKD (Chronic Kidney Disease) Stage 3, and that instead you have just discovered it yourself from seeing your blood test results.

An eGFR of 43 in itself is not at any severe or critical stage - the important point to watch out for is that it is remaining stable at 43 and not just repeatedly declining. I am at CKD 3b with an eGFR of 37 at present. I have a sole kidney and difficult-to-treat high blood pressure which is obviously impacting on my kidney function.

You should request referral to a renal consultant who will investigate further to see if there is any apparent cause of the reduced function, for instance untreated high blood pressure can adversely affect kidney function, as can NSAIDs such as Ibuprofen. Meanwhile, ensure that you drink plenty of water and avoid adding any salt to your food.

All good wishes and do come back and let us know how you get on.

[donnadb040 in reply to Celtic]

Thanks Celtic! I called this morning to see if he would refer me to a nephrologist, and of course, no return call yet! I don't take NSAIDS due to stomach issues. I despise water but I am trying my best to chug it as much as possible! I appreciate the info!

[curleytop1 in reply to donnadb040]

Hallo Donnadb040, a minor point about the water, I find using heated water from the kettle, or heating a cupful in the microwave for about 35 seconds, helps me to enjoy it and drink more of it than I can if it comes straight from the tap. It works for me even if I let it get cold - takes away the metallic/chemical taste

I often find sorting the minor stuff out helps with the bigger picture - best wishes, Curleytop1.

[girliegirl2012]

Hi Donna, I agree with Celtic.

I am here in the US and I don't know how they do things there?

With that said, shortly after Chemo, my Primary Physician noticed my kidney functions were below normal, so he recommend I see a Nephrologist which is a kidney specialist. I too have stage III CKD--(chronic kidney disease) My Nephrologist told me there was no cure for CKD, but you could slow progression. From my own experience: no salt! That plays a key factor. I buy the original "No Salt Substitute." I told him that I only found two things that just had to have a dab of salt and that was eggs and potatoes. He agreed. So, I trick my brain with "No Salt" and sometimes use Mrs. Dash for additional flavor. Certainly canned goods have enough salt already so we do get some anyway. You will be surprised at how much weight you will lose by no salt. Drinking extra water helps flush it out of your system. Try not to worry too much and practice no salt, extra water and acetaminophen. Another serious mention is nothing but Tylenol (acetaminophen) or acetaminophen Arthritis. He told me absolutely no ibuprofen, motrin, goody powders, etc. Those are the two biggest suggestions that I should pass along. I just went back this past week, and my kidney numbers were great! I got a great report. He said technically, I still was stage III, but I was soooo close to being a stage II, he hated to have to document stage III. Ask you physician to refer you to a Nephrologist.

[Celtic in reply to girliegirl2012]

Hello girliegirl,

"I told him that I only found two things that just had to have a dab of salt and that was eggs and potatoes."

That brought back memories for me of when I was pregnant. Because I have just a sole kidney, and pregnancy and childbirth is known to place extra burden on the kidneys, I was referred to a dietitian when my pregnancy was confirmed. Among her advice was to avoid adding salt to anything. The first boiled egg without salt was completely tasteless but I persevered and stuck to her advice throughout. After our son was born, I thought "Great, I can now have boiled eggs with added salt". However, rather than taste the actual egg which I had now become used to, all I could taste in the first boiled egg was salt, so that was the last time I ever added salt to an egg again.

With regard to potatoes, if you have them mashed, then a sprinkle of pepper will be all you need.

I am horrified by how much salt is added to absolutely everything. I rarely eat preserved meats/foods such as ham for that reason. Likewise, I try to eat as little from a tin as I can. I remember my dear Mum used to add a pinch of salt to her sponge cake mixture, as was the advice in those days, but my sponge cakes get woofed down in spite of having no salt!

You mention salt substitutes but just a warning here from the National Kidney Federation for anyone looking in who may have a problem with their potassium levels:

"Caution! If you are told to limit potassium in your diet, be very cautious about using salt substitutes because most of them contain some form of potassium. Check with your doctor or dietitian before using and salt substitute."

You're obviously doing the right things with your latest results. Well done, and keep it up......perhaps you'll get back to CKD2 yet!

[donnadb040 in reply to girliegirl2012]

Thanks for the info girliegirl! I called this morning and asked for a referral to a nephrologist but I havent heard back from them yet so........ I wait! So happy to hear that you got a great report! Keep up the good work!

[girliegirl2012]

Oh Hi Celtic,

No worries about my potassium intake. I did tell my Nephrologist about the eggs and potatoes, so he knows. I don't eat them everyday anyway, but the key here is moderation. Kind of like drinking alcohol; if you drink enough of it, it will make you drunk. Moderation is the concept. You made me giggle out loud when I was reading about your mom's cake and you said a "pinch of salt." Is that the same thing as a "dab?" haha. Thanks Celtic!

[rabbit01]

I feel for you. I am 50 years old and was diagnosed at 18% EGFR two and a half years ago yet I had had routine blood tests prior to that discovery and nobody ever raised an alert. Conveniently my doctor has no record of my blood tests prior to me being diagnosed as “they changed systems”. The good news for you is that you have discovered your problem at a relatively early stage and the fact that you have had 8 long years of fluctuating between 43 and 64 is good news rather than a drop over a short period of time. You have not said what the trend is though? Is your kidney function going up or down over those 8 years? I don’t know at what point the docs are supposed to alert you to it. I must say that in my expedience the medical profession in the UK certainly are not any good at giving advice to prolonging kidney function. I leant more from this forum and on line than the doctors have ever told me. One doc I saw when diagnosed just told me to go home and carry on eating the same as I had always done. To be fair to them, most don't really have much knowledge of CKD which is why you need to see a specialist. I am convinced if I had done not done that or joined this forum and changed my lifestyle then I would be on dialysis by now. If you want some action then you need to make a nuisance of yourself to get to see a nephrologist or go private and pay to see one which is what I ended up doing.

[girliegirl2012 in reply to rabbit01]

Hi, are you seeing a Nephrologist now? Do you know your numbers?

CKD stages

Stage GFR* Description

2 60-89 Mildly reduced kidney function, and other findings (as for stage 1) point to kidney disease

3A 3B 45-59 30-44 Moderately reduced kidney function

4 15-29 Severely reduced kidney function

5 <15 or on dialysis Very severe, or endstage kidney failure (sometimes call established renal failure)

My primary care doctor is the one who keeps an eye on his patient's lab work. He referred me to a Nephrologist. That is here in the US. I don't know how they do things there?

[rabbit01 in reply to girliegirl2012]

Yes, I know all my numbers. I see the Nephrologist every four months and have blood tests about every six weeks. My kidney function was 18% when diagnosed which I got up to the dizzy heights of 21% through diet and lifestyle changes by August 2015. Since then of course it is slowly and steadily dropping and is currently nearly down to 15% ie just going into stage 5. The docs are completely baffled as to why I have CKD. I don’t have any of the associated problems such as high blood pressure, I am not diabetic and there is no history of kidney problems in my family. I had scans and MRI to see if I had any twists or blockages in the pipe work and the kidneys looked fine. I put it down to a bad chest infection that I had in the winter of 2014 and the antibiotics I was given at the time. I still work full time although four days a week from home (I work with computers so can be based anywhere). I generally keep well but get very tired.

[donnadb040 in reply to rabbit01]

Thanks rabbit01! I called this morning to try and get an appointment with a nephrologist on my on and they all wanted referrals so, I called the uro this morning and asked for a referral. Of course, I have not gotten a call back saying yes or no yet so I'm just hoping for the best!

[girliegirl2012]

Hi Rabbit, I'm so sorry for your misfortune. You are probably onto something with an infection, plus there could be a hereditary factor. I'm sending you a link that I hope you find helpful. Keeping you and yours in my thoughts.

kidney.org/atoz/content/kid...

[rabbit01 in reply to girliegirl2012]

Thanks vey much for the article.

[girliegirl2012]

Hey Donna, here are a couple of things that might help answer some of your questions. Keep us posted and let us know what you find out.

kidney.org/atoz/content/kid...

CKD stages

Stage GFR* Description

2 60-89 Mildly reduced kidney function, and other findings (as for stage 1) point to kidney disease

3A 3B 45-59 30-44 Moderately reduced kidney function

4 15-29 Severely reduced kidney function

5 <15 or on dialysis Very severe, or endstage kidney failure (sometimes call established renal failure)

[donnadb040 in reply to girliegirl2012]

yea, according to that, I'm stage 3 and have been for several years. ;(

[Grams70]

Hi DonnaDB

I understand what you are experiencing! I have been having yearly physicals all my life and last year I received a contrast for a scan. Two days later my diuretic was increased and the combination damaged my kidneys. I was shocked, frightened and upset! Then in reviewing my records I also find out that my GFRs were between 54 and 59 for four years and nothing was ever mentioned! It is frustrating! I did the same as you and went home and read about kidney disease and unfortunately went into panic mode! I read about diet recommendations on davita and lost weight and drink only water. I watched my sodium intake and changed diet to no processed foods, and a lot of fruit and vegetables. I asked my GP to refer me to a dietician as I find the doctors do not provide much guidance with diet. I think you need to be your own advocate and ask your doctor for an explaination as to what is going on and ask questions! If no satisfaction start looking for another doctor for another consult! It is your body and your health and you deserve some answers! Wishing you the very best with your endeavor to get the support and answers you need!

[girliegirl2012 in reply to Grams70]

Hi Grams, that is an awesome post!! You rocked it!

[Grams70 in reply to girliegirl2012]

Thank you girliegirl!

[donnadb040 in reply to Grams70]

Thanks Grams! I feel the same way, I am having to be my own doctor! I asked for a referral this morning but I have not gotten a call back so I'm not sure if he is going to make the referral or not. It's ridiculous that we can't even make our own doctor's appointments!

[Lynndeb]

Hi Donna -

I too have recently been diagnosed with ckd stage 3a. I'm 68 and my gfr is 50 and my creatinine is 96.

The gp who diagnosed me suggested I tell the chemist I have kidney disease should I ever need painkillers and to come back in a year for another blood test! I usually keep an eye on my bloods because I also have ME/CFS, but although in the past, I'd questioned the top range creatine level I didn't know the importance of the GFR level and the gp who has been taking care of my health (?) (who has since retired) felt it unimportant to tell me that my kidneys had not been functioning well for many years.

When I asked why I hadn't been informed earlier I was told that they considered stages 1 and 2 unimportant! Research says otherwise. I've since complained to the practice manager and provided evidence that it is sometimes possible to halt progression or indeed revert to healthy kidneys with the aid of the right kind of diet - namely low protein, and healthier lifestyle. I was also told that gps didn't want their patients to worry with an early diagnosis, and that a change of name is being considered in order to make it less frightening!

Obviously there are many reasons behind kidney failure, but at 50 years old I certainly would want to know why.

I was also diagnosed with osteoporosis last year, and now I don't know if this due to my poor kidney function.

I can recommend the following organisations and books, which may be of help:

kidney.org

kidneyresearch.uk.org

mayoclinic.org

Books: Kidney Disease by Walter A. Hunt and Coping with Kidney Disease by MacKenzie Walser, M.D.

I'm assuming that the NICE guidelines are the reason behind any lack of urgency in early diagnosis, and I STRONGLY believe something should be done about this.

I am certainly no expert, but for the past three weeks I've learned as much as possible because I don't think preventative medicine is in the NHS's vocabulary, so we have to take responsibility for our own good health.

Good luck and please keep in touch.

Lynn

PS..A little while ago I read a frustrated reply from Poirotte to Kirstie regarding the lack of care shown to early/mid stage ckd patients.

[donnadb040 in reply to Lynndeb]

Wow Lynndeb, are you sure that we aren't clones?!?! That's exactly what has happened here! My Gfr was 43 and creatinine was 1.42 on this last blood work but after pulling out all of my old medical records, I see where it's been that low ince 2014 and no one has ever mentioned a word to me! Thanks so much for the links! I will check them out ASAP!

[girliegirl2012 in reply to Lynndeb]

Hi Lynn, I just finished reading your article. I too have stage III CKD. My Nephrologist told me that it is irreversible but you could slow down it progression. Chemo from Lung Cancer is what caused my kidney damage. I still have scans with contrast-(dye) and drink lots of water to flush it out of my kidneys. My Nephrologist told me also to take only Tylenol and Tylenol arthritis for my kidney's sake. No ibuprofen, no motrin, no goody powders, etc. Nothing but tylenol and tylenol arthritis medication. That's about what I've learned from my Nephrologist. I am here in the states and choosing my own physician is a good thing. The best I know is drink more water and give up salt. Seriously. As far as Osteoporosis, most of the time that is inherited. Tylenol arthritis is the best I've found for pain relief. I'm no doctor, I'm just speaking from experience.

[Keithtim10]

Hi Donnadb040 i was diagnosed with ANCA Vasculitis in Nov 2015 but it left me with Stage 3 CKD also due to it attacking my Kidney's and since then my GFR has never been above 42 which according to my Renal Consultant is good for me considering what it had done to my Kidneys and that this was the most i could really hope for.My point would be i would ask for further investigation as to what and why is causing yours.I wouldnt suggest what it could be but i am glad i went when i did to sort me out as it could have been a lot more serious.Good luck let us know

[donnadb040 in reply to Keithtim10]

I have narrowed it down to my PPI (nexium) so I have taken myself off of that! All I can do for now is drink water, reduce salt and pray unless/until he will refer me to a nephrologist. It just makes me so angry! Thanks so much for your input!

[Celtic]

Keith, I was intrigued by your post especially the mention of it being ANCA Vasculitis that led to your diagnosis of CKD3. I was also diagnosed with CKD3 around the time that I had PMR/GCA which also comes under the Vasculitis umbrella. In the absence of a diagnosis for a very long time, I had no choice but to take low dose, but long term, Ibuprofen just to get me off the bed and into a wheelchair and ambulance for my rheumatology appointments.....and a fat lot of good that particular rheumatologist was! The arrival of CKD could have been due to a combination of both the untreated inflammation and the Ibuprofen, plus having a sole kidney obviously put me at more risk. Another possible factor is the contrast that was used in the various CT and MRI scans - a rheumatologist without a clue to put me through those knowing I had just a sole kidney. My eGFR is at present 37.

May your eGFR long remain stable at 42.

[eastcoaster]

You have my empathy. This will be lengthy, but may help others who are also confused about the procedure which in your instance seems timilar to that in Canada. My GP had been watching my blood work but said nothing about compromised kidneys. I only discovered my condition last June after looking at my blood work on-line; the reports went back to Sept/16 when I registered to see my results, and my kidneys were comprised then. Right away I asked to be referred to a Nephrologist (GFR 60ish); he said they don't want us (doctors) sending kidney referrals until patient is progressed further (I am guessing perhaps GFR 15-20). On next visit, he referred me anyway and the Nephrologist told me he wouldn't treat me - GFR wasn't low enough and at age 76, I probably wouldn't need to be treated before I leave this life. A month later I called back to ask if their Renal Dietitian would work with me "no, your numbers aren't low enough, ask your GP for referral to a Dietitian". Finally, next month I will sit in a class in the Kidney Dept of a hospital, with a dietitian (hopefully Renal). It seemed that I just couldn't make any progress. When I said to my GP recently that NOBODY - including him - has said even one word to me about my kidney disease, he made no response. It's as if we're in an untouchable secret (kidney) club. Everything I know I learned from the internet. I feel very fortunate to be computer savvy. It's frightening to read on-line that we CKD sufferers are more likely to die from a heart attack. Pay attention to heart warnings. I'm being watched already (at GFR 40).

We happen to live between two major cities, so we could be referred in either direction. My Nephrology appt. was to the hospital to the west and wouldn't let me see the renal Dietitian there; this Dietitian referral is to the hospital to the east.

To reiterate what someone else said - search the internet. There is a plethora of info. It seems Vegan is is the best eating plan for us, combined with reduction in food intake making our kidneys work less, both of which are a hard sell for me, personally.

I just read a new book STOPPING KIDNEY DISEASE by Lee Hull. I don't know if it's in stores yet. Interesting read.