Advice after first nephrology appt?Feeli... - Early CKD Support

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Advice after first nephrology appt?Feeling frustrated!!

AimeeA7X profile image

Hi all. Apologies in advance for the long post. I am a 30 year old female!

I had tests Nov, Dec, Jan and Feb all showed reduced kidney function with a gfr decreasing (59,55,54) GP didn't know cause as everything else was fine so referred me to nephrologist.

I did some research. Cut out red meat, eat less protein more plant based meals (son is veggie so this has been easier)

Had tests in May for appt. Went today and well I feel completely palmed off, but also like I've let myself down by not advocating for myself more after months of stress and worry leading up to this. So he basically said my gfr had gone up to 65. He went through all my previous bloods and I saw all the red ones (abnormals) but tbh I didn't know what any of it meant. All I know is that he said most of it had returned to normal he just said my red blood cells we abnormal but not enough to worry about. He said that on my ultrasound my kidneys were slightly different sizes but that was probably the incompetence of the ultrasound technician rather than truth. He said my vit d has been low on every test but he doesn't want to treat it. And lastly he said no protein or blood in urine so because of that all is right and well with me, see you later! 🤦‍♀️

Dont get me wrong i am pleased that after these months of being worried and stressed that I am out of any danger zone and things have improved. But I don't feel that I should leave it at that and go on my merry way after all of these bad results. Also everything I have read states that a gfr this low for my age does not bode well, whether its increased or not, it still doesn't seem to be anywhere near where it should be?? The most I could convince him to do was retest in 6 months. Am I overreacting?? I just need some reassurance, harsh truth I don't know. Advice would be great!

15 Replies

Many of us have been scared and frustrated with the diagnosis of CKD. There are things we can do like prescribed diet. Perhaps get an appointment with a dietitian. I too have low RBC and low vitamin D. One kidney is smaller. Here is a link to the stages of CKD kidney.org/atoz/content/gfr

That's the thing, gp said CKD back in febDone all my research came to terms with it etc.

Nephrologist today said no kidney disease as no protein. So I'm just so confused.

Thank you.

That is confusing. Did DR mean you were not spilling protein? Here is article on possible CKD without protein spilling. kidney.org/blog/ask-doctor/... time for second opinion?

Yes nephrologist said could only be ckd with protein or blood evident (in urine I'm guessing). He put it down to dehydration. A one off maybe I could accept... But the fact that I had 4 months worth of tests with low gfr apparently means nothing?

Lol wish I'd never gone feel worse now than I did before today to be honest!

Hi Aimee.Let me first say that I completely understand your frustration. I in a similar boat. I’m new to CKD also but I’ve done a lot of research and asking questions. This is my educated opinion only... you are not out of the weeds yet.... your GFR is just a snapshot of your kidney function on that particular day and time. If you took blood and urine tests several times during a day your GFR score could be different all times. Your improved GFR could be from your improved diet. GFR of 65 is not normal for your age at all. Greater than 90 is normal. But getting tested every month is not going to help anything but stress you out. Unless your GFR drops drastically don’t fret. A range of 5 is nothing. What your experiencing could be acute kidney disease which could be caused by a variety of things like medications. Or it could be Chronic Kidney Disease. Time will tell. The best thing for you to do is get your GFR every 3 months and track the scores. Good luck. I hope I helped. Again this is in my opinion only. Keep us updated.

AimeeA7X profile image
AimeeA7X in reply to JaimieL

Thank you for your kind words. It is very frustrating, just not knowing what to believe. I think what's getting me the most is my age in all of this. I am generally healthy but I do get a lot of fatigue, I feel like I'm always moaning about something. But maybe that's just me. I still work a stressful full time job and never have days off etc I also have 2 young children so it's all a balancing act.All my medications have been approved for my kidneys. I was taking one on and off but have stopped since I was told about this.

I have chronic migraine syndrome and have suffered headaches since I was a teen so have always overused painkillers.

I have had times when I've been prescribed naproxen and strong ibuprofen so wouldn't surprise me if its linked. I have seen my gfr since 2016 and it's never been higher than 80 it's always declined. This most recent one is the only time it has shown an increase and that is because I have been researching and making changes.

JaimieL profile image
JaimieL in reply to AimeeA7X

So since your GFR has been below 85 for 5 years it sounds like it’s chronic and not acute. I would definitely seek a second opinion. And if you have to use painkillers use Tylenol instead. Cut out salt and drink more water. Plant based diet is very good. Keep up the good work.

Can you ask for a 2nd opinion?

I would certainly get a second opinion. Don’t take one doctors opinion when your still feeling uneasy about the results. You need answers. Just in my opinion that gfr range for your age is low. Have you had allot of uti infections in the past? Have you taken allot of ibuprofen or nsaids for any reason? High blood pressure? I had hydronephrosis, a blockage in my urinary tube at the entrance to my kidney. Ultrasound missed it. I never went for a second opinion, I just believed my doctor that nothing was wrong. Blood work numbers were always fine. Get the second opinion. Good luck to you!

I agree with everyone who suggested you seek a second opinion. Your red blood cell abnormality and low Vitamin D level caught my attention. Certainly, something in your lab reports is correctable. Nephrologists are hyper focused on kidneys, but there's a time to look at the surrounding picture. I'd place a call to my primary doctor (e.g. general practitioner, internist, etc.) and address these peripheral findings with him/her. Take the lab reports with you at the appointment and ask for referral to another nephrologist as well. Your primary doctor is responsible for your overall health and serves as your resource and guide. it's important to find answers for your wonky report.

Hi Amy

I had a similar frustrating experience with my first doctor that I went to, who basically said I didn't have kidney disease but was simply born with one kidney. He said that my function had declined but that was expected and some more confusing things. (I'm in my early 40's...)

I didn't trust him - he was colleagues with a woman who sent me to surgery and never told me I only had one kidney after seeing the scan because she was looking at my gallbladder etc.

Anyway, long story short, I found a competent kidney doctor, who ALSO discovered I have a rare and sometimes life-threatening disease called Distal renal tubular acidosis. I am in stage 2 of CKD.

If I had listened to the first guy, I would have stayed in acidosis. I have no idea what labs the first guy ran, but he wasn't LOOKING for anything and he didn't find anything. Now my life is vastly improved and I feel much better.

Funny thing, that 2nd kidney doctor caught the DRTA, but didn't catch the fact that I had too many oxalates in my blood. I got a 3rd kidney doctor during the pandemic who tested the oxalates etc and said I'm getting stones (I actually have passed what I thought were stones but again, prior doctors said my kidneys were fine!) DRTA causes stones and oxolates are in like all the vegetables. Neither the 1st doctor nor the 2nd doctor caught these issues. But the second doctor may have saved my life - the first one hadn't even properly warned me not to take NSAIDS.

So please keep after your health if you feel something isn't right. It can be tiring especially if you're already not feeling well, but it's worth it.

AimeeA7X profile image
AimeeA7X in reply to missdc

Wow that sounds like a right merry go round for you! Such anxiety as well! I'm sorry you have been through all of thisHopefully you feel more in control of the situation and aware of what is going.

I feel like my neph may have been a bit passive like your first one. I was the one who mentioned ibuprofen to him just to clarify as I had read it on here otherwise don't think he would. I also told him I'd cut red meat and he didn't seem phased and said people get so caught up on these things. If you want a steak every couple of weeks have one!!! Yet I've literally stopped eating red meat altogether for months now 🤦‍♀️

Please follow up with your regular doctor regarding the red blood cell findings.

I don't know whether they are higher or lower he just said there was an abnormality. He did state that it wasn't something he was concerned about though. Do you still think based on this that I should?

Absolutely not overreacting and you have taken good steps to take care of you. I would make sure he monitors you at least every six months, and if he won't ask your primary doctor, or find one who will. I would ask to have your vitamin d treated as well, if they won't get another doctor. You are too young for them to poo poo you. My left kidney is much smaller than the right, and also has scar tissue. I had symptoms for many years, even younger than you, and no one thought to look at my kidneys. Be proactive, learn, and then do what is best for you, not the doctor, or anyone else.

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