CKD or not?: Hi 6 months ago I had a blood... - Early CKD Support

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CKD or not?

Shawn123 profile image
Shawn123

Hi

6 months ago I had a blood test which came back saying I had a gfr of 65 and my creatinine was 1.5.

I saw a nephrologist who said I should do a 24hour creatinine clearance test.....this came back normal.....actually clearing the creatinine at the higher end of the test.

The nephrologist has now said that I don't need to see him again and that I do not have kidney disease saying my high creatinine levels are due to being muscular.

I am 5 10, lean build and 12 stone; so not overly muscular in my eyes.

I have accepted what the nephrologist has said but I m still concerned he maybe missing something.

I m a 50 year old male with an underactive thyroid gland with normal kidneys in size, however one is a duplex kidney.

Just wondering if I should just accept the nephrologist's professional opinion or seek a second opinion.

Would really appreciate people's thoughts and advice.

Thanks

Shawn

13 Replies

Even with a GFR of 65, you are at Stage 2 of CKD. I'm not sure of why the nephrologist says that you aren't CKD. On the re-test what was your latest GFR? Many things like medications, diet, exercise, illness, can cause spikes and drops in a persons GFR. If your last GFR was in fact in the Stage 2 area it's not too late to begin a kidney-friendly meal plan. Develop an exercise plan that you can do year round and make sure that your doctor gives you the okay. Check any and all of your medications, including OTC ones, for any possible interactions with Kidney issues.

Shawn123 profile image
Shawn123 in reply to Mr_Kidney

Hi Mr_Kidney

Thank you for taking the time to respond.

During my last visit the nephrologist said I do not have kidney disease, however in the letter he sent to my doctor it said I do not have significant kidney disease.

During my conversation with the nephrologist I mentioned should i be more cautious with my diet and he said no just eat well but I don't need to avoid foods that would normally be advised to avoid on a kidney friendly diet because I do not have kidney disease.. .. . It's very confusing!

Could my low gfr be because I am lean like the nephrologist said and it's nothing to do with my kidneys?

Thanks

Shawn.

Btw......gfr initial test was 60....re-test was 65.....so fairly consistent and my creatinine steady at 1.5.

Mr_Kidney profile image
Mr_Kidney in reply to Shawn123

Your GFR is a snapshot glimpse of where your kidneys are functioning. If your first labs had you at 60, that is Stage 2. That's why I asked if you had the GFR number for the 2nd series of tests. Since that one was 65 it went up but you are still at Stage 2. I wish I could state why doctors are not willing to inform their patients of CKD as early as we patients feel they should but that appears to be the case in both the UK and the USA.

If you are at Stage 2 and I'm just going by your GFR, would you like to know now and be proactive and do something about it to put off ESRD for as long as possible or would you like to wait a year or so and then be told you are Stage 4 and need to be thinking about dialysis and possible transplantation?

Here's where I can't speak for anyone but myself. I would have preferred knowing about my CKD a year or more in advance. I'd still have it as there is no cure but my GFR might be a lot higher than the 45 it is now. Then again maybe it wouldn't but the choice should be mine and not the doctor(s). I'm not alone in feeling this way. There are many here in this community and in the Kidney Disease community in the US that have similar situations.

If you'd like to check out kidney-friendly meals go to davita.com and check out their drop down menu for all types of meals for CKD patients.

If you take any medications go to drugs.com to see if anything you take is an issue for you and CKD.

If you want to learn more about CKD go to kidneyschool.org/mods/ and read through the modules and learn all you can. The information will help you gain a clearer picture of your health and what you can do to slow the progression. Even better, you'll get enough information to form intelligent questions to ask your doctor at your next visit.

Finally, a suggestion about your labs. I keep a spreadsheet of all my labs and results. I can see at a glance if from test to test my numbers are climbing higher or dropping lower or staying within the "normal" range. I use labtestsonline.org for that information if the doctor isn't as informative as I'd like.

Shawn123 profile image
Shawn123 in reply to Mr_Kidney

Thank you Mr_Kidney for your advice on what options and advice are available to me.

I agree that the doctors don't seem concerned until the kidneys are in real trouble and seem to dismiss my gfr of 65 as nothing to worry about......i would rather do something now rather than leave it.

Thanks again

Shawn

Mr Kidney. Very well stated. We do have choices for our health.

What is a duplex kidney? Also is an ultrasound possible?

Shawn123 profile image
Shawn123 in reply to Sally10255

It's where the kidney is more elongated apparently and is harmless but can make people with it more prone to water infections......i have never had a water infection though.

My ultrascan came back normal and my 24 hour clearance was normal with a clearance of 135ml which is a good reading apparently. My only out of range reading was my creatinine which was only just out of range at 150.....hence why I 've been signed off from the kidney clinic and told I don't have kidney disease and not to worry!

Mr_Kidney profile image
Mr_Kidney in reply to Sally10255

Actually, a duplex kidney refers to a developmental condition in which one or both kidneys have two ureter tubes to drain urine, rather than a single tube. Duplex kidney, also called duplicated collecting system, occurs in about 1 percent of children and usually requires no medical treatment. Under very rare situations it can present in adults and there is an underlying issue with cysts but if you suspect that talk to a urologist.

Shawn123 profile image
Shawn123 in reply to Mr_Kidney

Thank you Mr_Kidney......i had forgotten the full description and yes the person who did the ultrasound said I had a cyst as well but dismissed it and said not to worry.....so I haven't.

Should I have this investigated further in your opinion or just accept it as a harmless condition?

Thanks

Shawn

Hi,

This gets into a medical question of "How bad/serious are the cysts? I've read that if this is found with children it's not a medical issue because they usually don't present with cysts. However when it doesn't present until adulthood and a bi-product are the cysts then you might see a urologist and have a consult with your nephrologist to see if there are indeed medical issues due to the cysts. Without the cysts being present there is no medical issue from what I've read.

I hope you get some answers soon. Its frustrating when you get conflicting advice.

In my own case I've been 3a for at least 3 years. I've been having other worse symptoms. Having been to my gp he' not concerned and says my result is "tollerable" whatever that is. He wont give me my figures so as to work out my gfr properly. What should I do?

With a GFR of 65 you certainly do not HAVE to have kidney disease. In fact, it's highly unlikely. Anything above 60 is considered normal. To meet the criteria of CKD you would need to have evidence of kidney damage like protein or blood in urine, or changes seen on ultra sound or other imaging. If all other test are normal then a eGFR of 65 is considered normal.

Get another opinion..This is your health.

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