Sudden drop in EGFR of 5 pts in 1 month no ... - Kidney Disease

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Sudden drop in EGFR of 5 pts in 1 month no reason! Down to 38 from 43. Help!

Hopefultaw profile image
36 Replies

Sudden ckd stage 3b egfr dropped drastically in past year, now in 1 month went from egfr of 43 to 38 creatinine 1.79 to 2.01. At the egfr 43 I took drastic measures tracking everything I ate and drank ( phosphorous, potassium, protein, calcium, etc) to guidelines for my stage, stuck with very low sodium, drink only water, approx 2000 calories a day split evenly between all meals and snacks, no red meats, chick pea organic pasta, 4oz chicken breast 1 or 2 days a week at a meal. Read every label, eat approved veggies and grains only, etc. Lost 15 lbs intentinally in 2 months (staying steady at 193lbs at 5 ft 11). I am a bit more muscular than average male. Mild exercise daily.

My type 2 diabetes is in control, last A1C is 6.9, BP stays around 101/67 or so. I test sugar every few hours as recommended all withing good ranges. My overall cholesterol is 143, my tryglicerides about 115. I am at a complete loss as to why EGFR dropped the 5 massive points in single month especially when it was not due to my diet, sugar or BP. My urine creatinine was normal at 194 mgdl. Urine protein normal at 12mgdl. Prior to this last drop my Dr switched me from metformin to glipizie and statin was atorvastatin 40mg to simvistatin 20mg. I am prone to kidney stones but these days they pass on own. Have not had one for 2 months. Still, could there be a blockage of sorts causing acute damage? No true symptoms though... Bun creatinine ratio dropped from 16 to 13, whis IS good. I have trace of ketones but could be because I decreased water intake.

My primary care doctor could care less, only says test again in 3 months for past year. Not proactive so on own scheduled nephrology appt but have had a hell of a time getting in as new patient. They postponed me several times to Oct 15! Found another neph practice who can see me next week. Very concerned of extreme decreases in EGFR and creatinine rise! Thoughts VERY welcome. We are a mess over this.

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Hopefultaw profile image
Hopefultaw
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36 Replies

Hi

Try to relax and not worry about one lab value. Your labs are just snapshots of the time they were drawn. At your next draw, they could go up. Over the last couple of years, my values have yo-yo'd. The main thing for you to do is stay consistent. One tip I received from my nephrologist is to not over-exercise or run labs if you are sick or just getting over an illness. At the very least, inform your physician if you are ill and see what they suggest.

When diagnosed my GFR was 32, and last month it was 57. My next draw could have me in the upper forties. Look at your average over a longer period of time. Best of luck.

Hopefultaw profile image
Hopefultaw in reply to

Thanks for the insights. My egfr over past two years has consistently dropped. Was initially at 79... Wondering if it is acute damage from unknown internal issue.

in reply to Hopefultaw

Has your nephrologist determined the cause of your CKD? Our GFR does decline as we age. Do you exercise regularly, watch your medications, smoke or drink? I ask because all of those things can lead to a steady decline in GFR if you don't know the genesis of your CKD.

Hopefultaw profile image
Hopefultaw in reply to

Yes I watch and track all food and drink only water. I increased water intake slightly since this drop. I never smoked and do not drink alcohol. I take lisinopril 20mg hctz 12.5mg, wellbitrin 150mg, trileptal 600mg, simvistatin 20mg, newly taking glipizide 5mg/day split in 2 doses peior to last drop.

I have not yet been able to see a nephrologist as am new patient and they keep pushing back my appt (last delay was due to hurricane Dorian scares), so we at least forced them to order my labs prior, which is when the drop was discovered. They have me scheduled 10.15, which is too long a wait since I dropped the 5 points egfr in last month. Meanwhile, I found a smaller nephrology practice nearby that can see me next Thursday which is good. I may just keep that Oct appointment as well to get two opinions. Praying for a miracle, in the meanwhile.

in reply to Hopefultaw

It sounds like you are doing okay so again, I caution you to not get overly concerned with one drop in GFR. Please take control of your health care and direct your physicians to inform you of issues with your health. Insist on a referral to a renal dietitian. The sooner you have a kidney-friendly meal plan for you, based on your lab values the sooner you will begin to slow the progression of CKD.

Hopefultaw profile image
Hopefultaw in reply to

Have already been with dietician and over month ago orior, had already been on balanced renal diet for stage 3b ckd and track and weigh all food (down to herbs). Dietitian was extremely impressed never saw such detailed tracking and care. I csn even share with you all my mins and max limits set for all minerals and nutrients. Not giving up but discouraged each test is worst from last in past 12+ months.

Jayhawker profile image
Jayhawker in reply to Hopefultaw

As I’ve already said, your case sounds very similar to mine. I, too, have done the detailed tracking; followed dietary and fluid restrictions religiously; and taken my meds consistently. Regardless, my renal function has deteriorated. And mine didn’t bounce around either; it was a downward trend. For me, my data would suddenly plummet and then my nephrologist would get it stabilized at the lower level. It would stay stable with no fluctuation in data for 18-24 months. Then another sudden plummet in function. He was never able to determine what caused these sudden plummets.

You’ve described a consistent downward trend in your renal panel data over a year’s time, I believe. Thus it’s good that you’ll soon see a nephrologist. In the meantime, try not to worry; likely easier said than fine...

Jayhawker

Siobhancatherine profile image
Siobhancatherine in reply to Jayhawker

Hi. Just reading this post. I may be asking a stupid question. How did ur nephrologist get ur kidney function under control. Are there specific medications for this

Jayhawker profile image
Jayhawker in reply to Siobhancatherine

He focused on BP treatment with me focusing on fluid retention. Initially I had difficulty with that. He also had me follow potassium restrictions and sodium restrictions at that time. I was prone to elevated potassium and the low sodium was a part of my BP management plan plus sodium is pretty hard on our kidneys and causes fluid retention. I had severe anemia from the earliest diagnosis of my CKD so he put that under treatment as well. And I ate less protein and less dairy product. So he really just put a treatment plan in place that supported my kidneys; helped them to function more easily.

Because I had my A1C in check at 5.3-5.4 at that time I was also pulled off metformin at about that point in time as well. I have no idea whether that may also have helped or not. It may have had no bearing on my renal function stabilizing for several years.

Jayhawker

Siobhancatherine profile image
Siobhancatherine in reply to Jayhawker

Thank you for taking the time to reply. Thats alot of helpful information. Im just curious, does anyone also have a kidney cyst. Amd also diet. Im finding it difficult to find a proper diet plan.

waginger1111 profile image
waginger1111 in reply to Hopefultaw

Hi Hopefultaw, If this is still of interest to you, then I have an offer : If you let me know every one of your eGFR determinations together with the exact date of each, there is a slight chance I can help you with some valuable information. For now I can tell you that my eGFR dropped by as many as 17 ml/min... .some 15 years ago and I am still kicking.:) (It jumped back nearly all the way later.)

Jayhawker profile image
Jayhawker

Your situation sounds so similar to mine . . .

My renal has plummeted a total of three times with my type II in check (A1C 5.3 to 5.4 without medication) and no hypertension. My nephrologist doesn't know what has caused these plummets. However, in each instance, I have experienced extreme dehydration prior to the plummet. Rehydration has not reinstated my renal function; it has improved it some, but not reinstated it. As my case has progressed I have also developed problems with very low blood pressure.

Anyway, I am glad to hear that you are seeking out care from a nephrologist. This sort of sudden and major change in your renal panel data clearly warrants involvement from a nephrologist. It's my understanding that nephrologists want PCP to refer patients to the when this sort of data shift occurs.

It's time to take charge of your medical care team:)

Let us know what you hear from the nephrologist!

Jayhawker

Hopefultaw profile image
Hopefultaw in reply to Jayhawker

I failed to mention up until late, I was huge producer of kidney stones and had 4 lithotripsies in my adult years. Am sure these procedures did some damage...

Jayhawker profile image
Jayhawker in reply to Hopefultaw

That part of your case is very different than mine. I have had no kidney stones and one one kidney infection. But otherwise, our cases really do sound quite similar. However, this stuff is fairly complicated. So it's just really good that you're getting in to see a nephrologist.

Jayhawker

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Hopefultaw

HI Hopefultaw,

I too was a goose and produced a huge quantity of stones for a while. It was do to high uric acid. The stones can cause a lot of damage as mine did. I was passing them from small to large. Sometimes I was not even aware I had stone until i saw it, if you get my drift. Every time, I had a fluctuation in my GFR. I was giving medication and they stopped and my GFR was more stable. Do you know what was causing the stones?

Hopefultaw profile image
Hopefultaw in reply to Bassetmommer

They were calcium oxalate stones. The urologist said I naturally produce a large amount of oxalate and the biggest way to flush was to just drink more fluids. I have to wonder if I have some sort of obstruction as none of this makes any sense. I need an ultrasound ASAP but not seeing nephrologist until thursday!

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Hopefultaw

Hmm, I googled it and this is what I found:

kidney.org/atoz/content/cal...

so be aware of what you are eating as well. Sounds like you are already

healthline.com/health/calci...

So this what was interesting. It says greens can cause oxalate.... I did not know that and I eat a ton of leafy greens, life lettuces. No spinach though. That is why a dietician is so important to take everything into consideration.

GERALDDAVID profile image
GERALDDAVID

I was told I had stage 3 CKD, gfr of 46. I lost twenty lbs in 2 months, expected my numbers to go up but went down to 40 and another lab a week later had me at 36, I was very alarmed. I take rosuvastatin, metformin, and sitagliptin or Januvia, and a lot of other pills. My last blood work I didn`t get to go over with Dr because did it at that office visit. There was no gfr but my creatinine went from 1.93 to 1.70 so my gfr would have gone back up. So I am less concerned now. Maybe it takes awhile. My bun was a little high but bun creatinine ratio was normal range about the same as yours. Hope that helps some.

Hopefultaw profile image
Hopefultaw

Thank you! Today nephrologist stated she feels this is acute damage and is pinpointing my lisinopril hctz as potential culprit. Immediately is taking me off as my bp has been way too low and low bp can also cause kidney damage. Also, the diuretic in the hctz caused my sodium level on labs to be too low also. Scary. Sick thing is that the family doctor has no clue and misadvised me all along. Nephrologist said family doctor should have requested ultrasound but did not nor did they refer me to nephrologist. That was my own doing. All they kept saying for past 2 years is oh, kidney function a little low, will recheck in 3 months. They weren't alarmed, so why would we be, right? Wrong. If we listened this last time after last set of results and did not seek out a nephrologist on own, I am confident I would not be typing this right now. Be your own health advocate, seek out information, ask MANY questions, see nephrologist if drastic dip in egfr in 12 month period or if at CKD stage 3b. Do not wait and take ZERO supplements unless nephrologist advises. She said standard multivitamin and fish oil fine for now. Stand by for ultrasound and results of labs. Meanwhile I must drink a LOT of water (to prevent kidney stones since I am prone).

Jayhawker profile image
Jayhawker in reply to Hopefultaw

So glad you’re seeing a nephrologist!! I’d probably be finding someone else for primary care at this point as well!!

Jayhawker

Hopefultaw profile image
Hopefultaw in reply to Jayhawker

Oh we have, they are just not able to see me until November..

AnneEG profile image
AnneEG in reply to Hopefultaw

You've got me worried. My doctor changed me to lisipronol a few months ago as I was getting muscle spasms on ramipril.

Hopefultaw profile image
Hopefultaw

Effective today, limiting all oils (olive, sesame), and assuring I have 3 tbs flax seeds daily which offers calcium and omega. Mostly vegan now. Purchasing nutritional yeast as well.

Jayhawker profile image
Jayhawker

I just got nutritional yeast this week and am now learning how to cook with it. First, I really like the flavor. Tonight I had it on roasted vegetable for dinner.

Virtually no sodium per serving! And a complete form of plant-based protein. Low calories per serving. Low cholesterol, etc.

I’m really glad you mentioned this. I had been missing cheese but can clearly substitute nutritional yeast for Parmesan cheese when cooking.

Putting this on microwave popcorn would also be good—I haven’t tried that yet. I’ve made tofu roasted with a little olive oil and cornstarch. The cornstarch creates a crispy crust on the tofu when I roast it. Last night I tried adding noosh to the cornstarch. That was really good. I used these tofu cubes on salads, etc.

Anyway, I’m really glad you mentioned this!

Jayhawker

Jayhawker profile image
Jayhawker

I’m making modifications to some of these noom.forkly.com/food/15-best-t...

to-make-with-nutritional-yeast/13/sh recipes to make them renal-friendly as needed:

Jayhawker

Jayhawker profile image
Jayhawker

m.forkly.com/food/15-best-t...

Hopefultaw profile image
Hopefultaw

Yes I like the diet modifications we have been making. Hardly miss animal proteins at all. Keeping nutrients and calories balanced using cronometer food (and exercise) tracker-I print out the tracker info and bring to neph visits to discuss. My scale also tracks fluid content, fat content, BMI. Not saying any of this is the answer, but it just helps me feel somewhat in control...

Jayhawker profile image
Jayhawker

I definitely feel better with the shift to vegetarian. I was experiencing some acidosis. That’s gone now. Also, the decrease in my BUN is likely a major reason why I’m feeling better. I’ve been able to exercise more because I’m feeling better. And I’m also sleeping better likely due to both the decrease in my BUN and the increased exercise I’m doing daily now.

Plus, I actually find that I want to eat again; I look forward to diner now. Before I ate because I knew I needed to eat but I wasn’t hungry and definitely did not want to eat the boneless, skinless chicken breast that I typically eat for dinner.

So now it’s just the matter of figuring out how to make renal-friendly vegetarian meals for dinner. I’m making progress but could really use a web site similar to Davita with a host of renal friendly vegetarian meals. At this point I haven’t found that diet of website.

Jayhawker

Hopefultaw profile image
Hopefultaw

So my latest update is I have had ultrasound and tech doing it elluded to MANY kidney stones present ( I am aware I practically manufacture stones-calcium oxylate and had 4 litho peocedures 10+ years back) which has us greatly concerned as it must correlate with the swift decline in EGFR. I get new labs Tuesday but ceinge thinking if what results are thia time -just a month prior to large 5 pt EGFR drop. Next nephrologist visit not until Oct 3, she wanted to get the above tests done first and see what 3-4 weeks do. Extremely fearful of seeing creatinine and EGFR. Much anxiety (my wife moreso). We have included apple cider vinegar in diet meanwhile to aid with stones while we wait... Praying for miracle that we stop or reverse decline before reaching ES.

waginger1111 profile image
waginger1111

Hi, have you got a diagnosis (diabetic, hypertensive, etc,) for your CKD? If so, what is it? Have you kept all your lab reports?

waginger1111 profile image
waginger1111

Are you taking large amounts of vitamin C?

RoxanneKidney profile image
RoxanneKidney

I would not worry about the numbers and go by how you feel. Someone on here said they were stage 4 since 1996. That is a long time. I have been telling myself that if I worry day in and day out about this issue, then I'll forget to live or I'll get hit by a bus having spent what little time I did have worrying. Some of those meds you are on might influence your GFR. The SGLT 2 drop GFR and by slowing down the energy transport cells in the kidneys, they actually keep it working longer. Not sure if the one you mentioned is an SGLT 1 inhibitor, but check studiea regarding it and see how it behaves relative to kidney function.

RoxanneKidney profile image
RoxanneKidney in reply to RoxanneKidney

I just noticed that I his post was 2 years ago. How are things?

Hopefultaw profile image
Hopefultaw

Thanks for asking! So last year, EGFR jumped up to 64 and now 6 months later, a drop to 44! Again, no idea why. Had ultrasound last month and still shows a massive amount of stones (some quite large), but none appear to be moving. Nephrologist insisted on putting me back on metformin during this last drop so makes you wonder. Saw primary next day who immediately switched me back to glipazide instead. He said he read in a study metformin may have something to do with it. I was also recently taking too much vitamin d due to a miscommunication by nephrologist, so that has been rectified. My tryglicerides have been high, can go up to 500, but they said is genetics and not much you can do. Also, nephrologist INSISTS I should not limit animal protein at this point but to be safe, I still am to not stress kidneys any more than necessary... Going back in February 2022 with updated ultrasound and labs. Prayers are welcome!

hopefulcan profile image
hopefulcan in reply to Hopefultaw

Hoping you are in good shape. Came across this thread after my husband (43 years and has a solitary kidney by birth) who is stage 3b had a similar drop in numbers (48 gfr to 44) in three months. He is diabetic and has hyper tension but numbers are great, His A1C is 5.9 and BP in control. The overall protein in his urine has dropped too. The only metric which caught our eye was his cholestrol which was up. He is regular with his nephrologist but hasn't consulted a renal dietician yet. I feel like I am panicking more than I should but I kind of am and imagining the worst possible scenarios. Does efgr spring back up?

bikerchrish profile image
bikerchrish in reply to hopefulcan

I was told there is room for error and that can explain things like this. My egfr is all over the place. I had 52 then 63 then 50 then 52 then 50 all in the same four day hospital visit.

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