Worry or not??

[Hotchoc27]

Should I worry if my Nephologist says there’s nothing to worry about?

I’m new to this site; you all sound pretty knowledgeable so thought I’d get your opinions if you don’t mind?

Over the past couple of years I’ve had some symptoms which has put in under the care of Neurology. 8 months ago was sent to Renal for low gfr (52); 6 months ago was 49, today 45. Consultant said nothing to worry about this is quite normal!

From everything I’ve read this doesn’t sound normal. I’m 46 years old. He has referred me for further protein test (takes 2 hours) but said he doubts it will come back as having kidney problems! This doesn’t make sense!

Thoughts anyone please; what’s your experience with anything similar?

Thanks

[Bassetmommer]

Hi Hotchoc,

You are correct, it is not normal. And the fact that your GFR is dropping is a concern. Right now you are Stage 3a. I would tell your doctor you are very concerned and wish to see a nephrologist. Do not let him/her blow you off. I do not want to scare you and doctors quite often dismiss kidney function until stage 4. But the good news is you are on top of it and there is lots you can do to help yourself. But first, take care of finding out what and why. If this doctor keeps dismissing this condition, change your doctor.

Let us know if we can answer any further questions.

[Hotchoc27 in reply to Bassetmommer]

Thanks Bassetmommer; yes I will keep on top of this. I really do look after myself through diet & exercise so I feel this is not ‘normal’ at all!

[Andreli]

Hi, I hope there is nothing serious with your kidneys and i wish you the best of health.

From my experience I can say just one think... don't trust doctors! Seek knowledge, investigate various sources, demand tests (blood /urine) and if necessary biopsy.

I have been diagnosed with nephropathy and doctors did nothing for a year except giving me blood pressure and diuretic pills. Follow your instinct.

Best of luck

Andre

[Hotchoc27 in reply to Andreli]

Thanks Andreli; keep well yourself too!

[Zazzel]

Yep, I’m with the others. My doctor was running tests because I wasn’t feeling well. Mug GFR was 51 at the time. They then found out I had hematuria so sent me to a urologist who did scads of testing with no findings. Finally, thank goodness, they sent me to a nephrologist. If I had been pursuing things more as you are, I would have been diagnosed a lot sooner!

[Hidden]

You should not worry! That is just spinning your wheels and goes nowhere. You should however, be concerned and use all the options available to you. We are fortunate to have so much information available on almost everything. It is so much better than just 50 years ago. If your doctor is not inspiring confidence, go somewhere else. He/she does not have the only game in town. I have stage 4, Autosomal Dominate PKD, with a GFR of 21, where it has been for several years and I have been concerned for years. Keep reading, you cannot learn too much. I would be willing to give plenty to have your GFR, and I have lately decided to a Vegan lifestyle. That may sound severe but I have a severe medical condition and am willing to do what I can to help it. I told my doctor and he is agreeable. With your GFR, I would do the easy stuff first if you haven't already: No dark colas, tobacco or alcohol, and use steady, reasonable eating habits. Easy on the pizza, etc. See where it goes and tighten up as necessary.

[WYOAnne]

First of all, what has your creatinine, BUN and urine test results? Remember eGFR is just an estimate of your filtration rate of your kidneys. It is only part of the picture. GFR and creatinine can be affected by your being dehydrated. Always make sure that you are well hydrated when you have labs done, whether it is blood or urine

If your nephrologist hasn't told you these results(creatinine, BUN, etc), you need to know. It is your right to know. Remember to be your own advocate! This if your LIFE and your HEALTH! If he doesn't...I think it's time to change doctors.

Many of us have experienced the same thing ….doctors telling us that there is nothing to worry about. It's like they don't worry until kidney function is down to 50%. If doctor's would tell us sooner that we have a kidney issue we could do something sooner and maybe never need dialysis or a transplant. Many on this site have been able to stabilize their numbers by changing to a kidney friendly diet, keeping their BP in check, drinking plenty of water, exercising, etc.

May I suggest that you keep a notebook where you keep all of your test results so you know what your body is doing. I also suggest that you learn as much as you can about CKD. The NKF has great information for you.

Good luck to you!

[RickHow]

You have a lot of advice. But I think before we all tell you this is not right, that you need to ignore the doctors and take care of yourself, that the future may be bleak, there is more information needed. You indicate you were under care of Neurology, who then had you also consult a kidney doctor. This would indicate perhaps (from neurology) you have some other condition that is being treated. With surgeries or medications, or? Any of which can effect your kidney function. We do not know what medicines you take, what other medical conditions you have. The kidney doctor does. And he/she says not to worry. But anyone would worry if they see a continual decline of function (gfr) without explanation. And even if this drop is caused by something else, it would seem the kidney doctor would advise you of dietery restrictions, etc. It is good they are going to test your urine further. All I can say is what I would do. I would take the urine test. When you meet again if the results are poor, then demand more action. There is no magic medicine, but they should be advising you on diet, exercise, medications, fluid intake, etc. And simply say it all makes no sense to you. To have a continual slide in your egfr. And especially if some abnormal protein is found in urine.

If the answer is just the same (for you to now worry) then try to see another kidney doctor.

This is why there are second opinions. Maybe the best way to make your question is to say, every test says the egfr has to be greater than 60 to be normal. Mine is below that level. So how can you advise me to not worry if I am below normal? Maybe the answer will be simple. that it is being caused by a medication, or some other treatable ailment.

[Hotchoc27 in reply to RickHow]

Thanks Rickhow; I’m not on any medication.

I had VZV meningitis & encephalitis 6 years ago with reoccurring internal shingles twice since then.

I get run down a couple times a year with a virus. I have ongoing Balance problems & memory difficulties hence why I’m under neurology. They picked up that my gfr was declining a little each time I had bloods & they referred me to a Nephologist at the rental unit.

I have another appointment with my neurologist in a few weeks so hopefully might get some answers.

Thanks for your reply; I like how you suggested I should question that ‘a normal gfr is 60 & mine is below ‘ consistently !