Unexplained deterioration of GFR - Early CKD Support

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Unexplained deterioration of GFR

Lau12 profile image
12 Replies

Good morning, I’m a 43 year old female and am awaiting for my blood results taken to try and understand why my GFR has fallen from 73 which it was this time last year. It had dropped to 56 in July and now it’s 53. These are the only numbers I have. My urine isn’t showing any protein at the moment. As part of my blood tests my Dr has done a test checking for protein levels which has scared the life out of me after what I’ve read about it.

I am genuinely petrified. I’m a single mom with 2 young teenage daughters and I feel like I’m going to hear the worst news next week when I get the results. I don’t know if I’ll be able to call the Drs for the results I’m that scared. I can’t stop feeling sick. Does anybody have any advice or similar experiences at all?

Many thanks for reading.

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Lau12
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12 Replies
Skeptix profile image
Skeptix

Hi there and welcome.

Obviously something is going on with your kidneys and you're now on the path to finding out what. There was already something going on at eGFR 73, given your age (99 would be more like where it ought to be)

eGFR is an estimate of kidney function, but its not actually saying what your function is. Its a figure derived from a single metric: creatinine, a product of muscle breakdown that your kidneys filter. You'd see that as your creatinine goes higher your eGFR goes lower.

Creatinine can be raised for all sorts of benign reasons: hydration(de), heavy exercise like weightlifting, eating lots of meat prior to blood draw, etc. But it can also be an issue with kidneys.

The fact you've two low 50's along with the 70' reading indicates something amiss, though what that is...

I lost 10 eGFR points due to Covid, for example.

There's two things needing doing. The first is to ensure to chase down fully what's going on. It isn't unusual for doctors not to do very much and take a relaxed stance on declining kidney function. They often take a relaxed view on BP, supposing a high office reading is down to white coat BP elevation, whereas elevated BP is a significant cause of kidney damage.

The second thing is to start looking at diet. Diet has recently (2020) come to the fore as a significant way to slow the decline in kidneys due to disease. Don't go mad but if you start with:

- limiting salt to 2g sodium (ca. 5 g salt)

- reducing protein intake (say 0.8g protein per kg body weight per day. Many eat way too much and it's hard on kidneys. Meat contains about 25% protein for instance and there's protein in just about everything, veg included.

- drinking 1.5 litres water.

-Cut out red meat and processed meat like salami and ham altogether, they are hard on your kidneys.

- avoid NSAID meds like the plague (e.g. ibuprofen headache pills and anti inflammatory- they are kidney damaging.

This just an interim measure to ' go easier' on your kidneys until you find out what's up. By taking your foot off your kidneys with the above you can get an eGFR bump up

You on any other meds or herbal remedies / supplements? Many are kidney damaging.

If the worst comes to the worst (CKD diagnosis), then diet holds promise in stalling disease progression. Its more involved than the above diet intervention, but doable. If you can hold at 50's eGFR you might never know you had restricted kidney function (in the event you transpire to have that).

Keep in touch in any case, there is great support and advice here. And try stall the worry, its not all doom!

Lau12 profile image
Lau12 in reply to Skeptix

Thank you so much for your response Skeptix I’m so grateful. You’ve mentioned something that I was thinking about my eGFR being just 73, until now I never had a clue what it was and yes it’s not great for my age. I had COVID in January and wondered if this had done anything. At the moment I have no protein in my urine which I guess is positive. This has definitely shook me up and I’m going to take a lot more care of myself. Thank you again and I’ll post what my eGFR is this week when I get the results which I’m very scared about!

Skeptix profile image
Skeptix in reply to Lau12

Do that. See if you can get a spot urine sample analysis whilst at it (if not to late).

There's no such thing as no protein in urine - there's always some. The more sensitive test is albumin (a particular protein) rather than just protein.

One of the results would be urine albumin to creatine ratio (ACR) which would be good to know. Other results of interest would be urea and potassium. Indeed just photograph your results entire and attach to the post and folk can have a look.

Have you a nephrologist or are you just attending a GP at this point?

It's a great site (you can also look at the kidney disease forum which overlaps with this one) with lots of support and more importantly, good solid information. But let's not suppose anything worse than need be for now..

Lau12 profile image
Lau12

I took a urine sample a week Friday just gone it was sent away to be tested, result came back on Monday as clear. I had all bloods taken on Friday just gone & the one that really bothered my was a test for proteins in blood for Myeloma cancer. They use this test for other things as well I’m just convinced there’s something seriously wrong with me. I’ve had a dreadful 8 years or so with my alcoholic husband who I’m now separated from & just as I was starting to try & enjoy life which I’m not the happiest of people this has come up. I have my 2 daughters to look after I don’t know what they would do if they didn’t have me. Thank you again for responding to me it’s a big help 😊

Skeptix profile image
Skeptix in reply to Lau12

Oh dear. Well you wouldn't be the first with compounding problems but nevertheless, my sympathies. Maybe it's a personality type thing but if you can at all, try not to worry about things to come. I've given up worrying having thought A so many times only to find B was the case. Where B was 'nothing to see here folks'.

It sounds like they are testing for an as-yet undiagnosed issue(s)??

BettysMom profile image
BettysMom

Why are you convinced that there is something seriously wrong with you?

Lau12 profile image
Lau12 in reply to BettysMom

I always think the worst unfortunately, I really wish I could stay calm & positive. I do try though!

RickHow profile image
RickHow

It is far easier for me to say this than for your to do it, but first of all calm down.Follow the advice of your doctor, not the internet. He knows you, your tests, your blood, far better than anyone on the internet or in this forum. Of course you are nervous to get the latest results. But don't immediately think that CKD (if it even is CKD) is a death sentence. You had an original egfr of 73. Anything above 60 is considered normal. Perhaps 73 is not ideal, but it is still called normal. But forget all the egfr stuff. What matters is your Creatinine level. When you get your test results see if this level is in normal range. You see all this egfr formula, labelling is being found more and more to be not as accurate as was once thought. It is a guide, such as in your case where for some reason your egfr is sliding downward. Now the doctor needs to find out why. Many factors influence egfr. Hydration level at time of test, medications you take, other illnesses you have, supplements you take, excersise or lack thereof, obesity, etc., etc. You may have urinary tract blockage, infection, kidney stones, a growth on one of the kidneys, etc., etc., and NOT CKD. You have no abnormal amount of protein in urine (everyone has some level of protein in urine but very low amounts). All you can do is exactly what your doctor is doing, one step at a time. If your egfr is lower again this time, he/she will likely order some scans or ultrasounds to look for some of the things I have mentioned.

But think of something positive. You have found this egfr reduction at an EARLY stage. At your level, IF it is CKD related, you are classified MODERATE kidney disease. Years and years ahead of you with proper diet, precautions, etc.

Waiting for test results is a huge weight we all must suffer through.

Lau12 profile image
Lau12 in reply to RickHow

Thank you RickHow for taking your time to respond to me with all your knowledge. I've spoken with my Dr & my kidney function has gone back up to 72 since drinking lots of water for 7 days. My Creatinine level was 99 its now 76. They want me to just have another blood test in 3 months to be sure & recheck my urine now as there was a trace of blood. I am pleased it's improved & this has most certainly learnt me a lesson, I will be drinking lots more water & looking after myself more. I don't drink alcohol, I need to improve my food diet. Going through this I've learnt what's good & not for our kidneys. Thank you again 😊

RickHow profile image
RickHow in reply to Lau12

See, you got good news, it went back up. About water consumption. Follow your doctors advice. I only tell you what my kidney doctor tells me. That I should stay hydrated but it is NOT necessary to overly consume water. I personally drink a minimum of 50 ounces per day, but the vast majority of days I consume between 60 and 65 ounces. Not just water, but any liquid included, such as coffee or tea. There was some small amount of blood in your urine. This supports that perhaps (and your doctor knows best) you did have a URI, small kidney stone, bladder infection, something of this nature which was causing your drop in egfr and when it passed or cleared up, the egfr went back to your normal and still some traces of blood. You will sleep well tonight :)

RickHow profile image
RickHow in reply to Lau12

If I have your statistics correct, you are 43 or 44 year old female, you latest Creatinine level was 76 umol. Then your egfr is not 72, IT IS IN THE MID 80's. Even better. That is using the latest egfr calculator that does NOT consider race. The old calculator used to provide different results if you were black versus white. But a 76 Creatinine level for your age results in an even better egfr for you.

Milli77 profile image
Milli77

I have been having the same issues. I am 71 and my GFR was 65 to 67. I was given high blood pressure medication two years ago. My GFR went from 65 to 44. I went to see a nephrologist and was told "Your Primary Care Doctor did this to you. Apparently, I have white coat syndrome and never really had high blood pressure. My blood pressure went so low it caused "acute kidney failure". My GFR has gone up since then from 44 to 58. I never went back fully. Now I was given statins probably because the acute turned to CKD which is now causing my high LDL. Be ware of doctors and what medications they are giving, particularly, if you are older with a lower GFR.

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