Advice please after first nephrology appointment! Feeling confused and frustrated!

[AimeeA7X]

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!

[Hidden]

The tests a doctor will look at to diagnose CKD, in addition to GFR are serumCreatinine, Blood Urea Nitrogen (B.U.N.), and Albumin to Creatinine Ratio (ACR). How were those test results?If those other tests are inside the reference range, you may not have CKD, however, your kidneys don't appear to be functioning at their optimum level.

There are diagnostic tests the nephrologist can run to see if there may be other health issues at play.

Since your GFR is not at an appropriate level, you might ask if other issues could be impacting their function.

Best of luck.

[AimeeA7X in reply to Hidden]

Thank you for your replyUnfortunately I really don't know much about other results.

He showed me a graph of creatinine and it showed big increases over the Nov, Dec, Jan and Feb tests.

But then said most results were in normal range from my may tests, except those I've mentioned.

I just don't know if maybe there's improvements because of changes I've made due to my research e.g. No red meat, more plant based meals, reduction in pain killers etc. He just really didn't seem to have the time for me and as I was on my own, the whole situation just made me feel anxious.

I have huuuuuge hospital/doctor anxiety anyway as I lost my mum 12 months ago so it's a miracle I even managed to get myself in that room today to be honest.

I guess what I'm wondering is if I should get a second opinion or should feel content with what he has said? Only thing seemingly wrong is my gfr with the odd couple of things!

[Hidden in reply to AimeeA7X]

You can contact his office and request hard copies of the labs. I don't know where you live, but you do have the right to obtain a second opinion. It would also help that new nephrologist to see the hard copies of your previous labs to compare to the ones s/he will run.Six months is a long time to wait for additional tests when you have already had several and no explanation given.

Until you receive a definite answer avoid NSAIDs, red meat, processed foods, and stay hydrated with water.

[AimeeA7X in reply to Hidden]

I'm in the UK. Have waited since Feb for this appointment, covid aside there is normally large wait times for referrals anyway.I'm going to contact my docs for access to test results to see where to go from there.

Thank you for your replies!

[Hidden in reply to AimeeA7X]

Even though you may not have CKD, but to ease your anxiety until the next physician visit, may I suggest you go to kidneyschool.org and view the learning modules for kidney disease. You will learn a lot and be able to develop questions to ask at your next doctor's appointment.Best of luck.

[Mgt8]

Hello,

Mr_Kidney has some good advice here. We can always rely on him for well considered practical answers to our questions. I totally agree that more information will help you to consider your situation.

I would also like to add that CKD is only diagnosed below egfr60. Our egfr varies daily and the test is just a snapshot in time. The new changes you have made to your diet could well be making the difference and keeping healthy really does depend on what we eat and what we do. Plenty of water helps to keep our kidneys working as I'm sure you already know; regular exercise and avoiding nsaids. Also, keeping an eye on blood pressure because if it is too high, it can lead to a reduction in kidney function.

I too am in the uk and yes, sadly, at the moment there are very long waiting lists which is frustrating but there's not much we can do about that except to get in the queue. Your GP can keep an eye on your egfr in the meantime and you can continue to learn more about CKD and follow your healthy lifestyle. Hoping this is of some help.

My best wishes,

Mgt

[medway-lady]

I'm in the UK and I'd advise you to just stay healthy and not stress to much. The GFR goes up and down and your GP will do regular blood tests. The waiting lists are long but with any condition with needs urgent treatment the NHS is open for business as usual.

[Tolmezzo]

I see many people (and Doctors) really too much focused on GFR. I'm not doctor but I believe that GFR it's important as well as many others blood test elements. Kidney functionality cannot be assessed looking only at GFR. 24H urine test it's also very important. At the end urine composition is results of kidney work. It's quite strange blood cells are over. Normally it's the opposite as damaged kidney should be struggling to produce erythropoietin. Another point kidney function could be also temporary reduced due to infection or other cause. Keep blood pressure under control.I would not very much stressed. Get exams and look at it entirely. Routine of 6 month seems reasonable. All the best

[theoneil]

You need to restrict your intake of sodium, potassium and magnesium. Read labels,meat fresh. Those minerals are in everything. You can have up to 2000 gems of potassium a day. Do some research. Get copies of your bloodwork watch creatinine and bun.

[Darlenia]

That is true if one's lab reports show these electrolytes are no longer in the normal range. If they are in the normal range, they should not be reduced. Doing so can cause all sorts of issues - including heart irregularities, breathing difficulties, passing out, and more. If changes are necessary, they should be accompanied by frequent monitoring with blood draws. Electrolytes are essential to life. For many kidney disease patient, however, some adjustments may be needed.