Help needed: Just had gfr done and it’s 5... - Early CKD Support

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Screwedupsal profile image
19 Replies

Just had gfr done and it’s 53

I’m 55 GP says it’s just my age but I’m a retired nurse and seem to think that this is chronic kidney disease .‘

Can anyone help ?

Thanks

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Screwedupsal profile image
Screwedupsal
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19 Replies
Bassetmommer profile image
Bassetmommer

HI , As a nurse, you probably know they is more to the diagnosis for CKD. But I would be alarmed as well. To diagnose you need more tests. Is this the only time it was that low? What was it before, say for the last three labs. Did he schedule you for more lab work. I would insist on that and have a complete renal panel done as well as a CBC. Just for reference, not diagnosing, but GFR of 53 is stage 3A. But have the doctor do a complete work up and confirm what's going on.

Don't panic as there is a lot you can do to help yourself. Finding a better doctor might be in order.

Screwedupsal profile image
Screwedupsal in reply to Bassetmommer

Hi Thanks for detailed reply .I am scheduled for repeat bloods next week apparently no base line work since 2018 which was >60.

I am now quite sure that it is CKD as I have foamy pee very itchy dry skin and probably an input output deficit .🤷‍♀️

Been very busy planning our daughters wedding and helping vaccinate during the pandemic so have a failed to notice these symptoms until this result !

I see you have an interest in psoriatic arthritis . Curious if there is a link with CKD as I have had PA for a number of years .

Marvin8 profile image
Marvin8 in reply to Screwedupsal

Lots of reasons for foamy pee and itchy skin, so don't go by that. Do the repeat blood work and get back to us. If your GFR stays low, you should probably inquire about a 24hr urine collection and an ultrasound.Don't panic. Enjoy the wedding.

orangecity41 profile image
orangecity41

I was diagnosed at CKD 3b at age 76 and have been on prescribed CKD diet, based also on sodium, potassium and phosphorus. Have been on the diet for 5 years and progression has slowed. I do an average of my eGFR test results. Here is a link to National Kidney foundation which references CKD levels and age. Keep us posted. kidney.org/atoz/content/gfr

RickHow profile image
RickHow

First of all take a deep breath and stop jumping to conclusions. You are having the typical reaction of worry, jumping to conclusions, finding other things that you think confirm your self diagnosis (foam, an itch, input/output problems, etc.). There are a ton of posts on here of people who see foam in their urine, assume it is CKD caused (protein in urine), get tested and find out it is NOT CKD. You are that worried, get a dip stick , test your urine, see if any increase at all is indicated for albumin or protein.

Your Creatinine level may be increased for a variety of reasons besides CKD. Was it a fasting blood test and you were quite dehydrated? Is there some other cause such as kidney stone, low grade uti, inflammation, etc.? While not common, it can simply be a lab error. You mention a input/output deficit. You have monitored your input/output for 24 hours?? Or you are just thinking it seems to be that way. Decreased output is NOT a typical sign of CKD at moderate levels of CKD. In fact it is the opposite with the feeling of wanting to urinate a bit more often. This is simple to validate. As a nurse you know how. You wake up and urinate as usual. From that point on, through and including the first urination the following morning you capture your urine and measure the quantity and also keep track of how much fluid you consume (including coffee). Compare the two measures and they should be approximately close, but seldom equal. I mentioned you could have low egfr due to dehydration, which is also a cause of decreased urine output. This may simply be your overall problem, not CKD.

Your doctor is on the right course of action starting with another lab test (and hopefully a urine test too).

Remember diagnosis of CKD is NOT as simple as looking at your egfr on a chart and saying it is CKD. You have to meet other requirements and tests. The typical egfr for a 55 year old female (in a perfect world which is none of us) is 75. Or as "they" say greater than 60 egfr. I bet, and hope, with your next test you will find you are at or above 60. Take a non fasting blood test.

PopcornLover1971 profile image
PopcornLover1971 in reply to RickHow

I am confused by the suggestion to take a non-fasting blood test. Would you explain more, if you are able, as to why fasting might increase creatinine?

RickHow profile image
RickHow in reply to PopcornLover1971

Sure. The answer is easy. Fasting contains two parts. No food for a number of hours. But more importantly regarding CKD, it is no WATER for 8, 10, or 12 hours (each doctor seems to have different requirements for how long to not eat or drink). No water for that length of time causes dehydration. Dehydration leads to increased Creatinine levels because the kidney is processing less and not removing as much toxins as it normally does. Hydration plays a key role in managing CKD.

PopcornLover1971 profile image
PopcornLover1971 in reply to RickHow

Ah. See my doc never says no water.

Thanks for the reply.

04puppy profile image
04puppy in reply to PopcornLover1971

Is a prescribed water pill with a BP med sometimes a cause? Does anyone know ?

PopcornLover1971 profile image
PopcornLover1971 in reply to 04puppy

I lost kidney function on spironolactone

Screwedupsal profile image
Screwedupsal

Update

Well GP refusing point blank to repeat egfr for another 6 weeks !!

We had words , but at the end of the day he can call the shots 🤷‍♀️

He told me that if I had CKD. repeating the bloods wouldn’t make any difference and I would just have to live with it !!

Thank for all your kind words

RickHow profile image
RickHow in reply to Screwedupsal

That is upsetting to you I am sure. What he is saying is basically true but sometimes doctors don't understand the emotional turmoil a patient goes through waiting. It reminds me of an old song by Tom Petty called "the waiting" and the line "waiting is the hardest part". To this very day whenever I have a blood test, or scan of some type, from that point until I get the results, even if it is just one day, I'm so nervous and anxious. We are at the mercy of the health care system.

FiHut profile image
FiHut

Over the last 18 months with none of my normal 6 monthly blood tests because the doctors were not seeing anyone through Covid. But last month and only because my GP gets paid for it a diabetic blood tests by the practice nurse showed I have now dropped from a GFR of CKD3 of 37 to a GFR CKD 4 of 21 and I have become symptomatic for the first time so that I can now say I know I have kidney issues.

How do I get my GP interested enough to do a full bloodwork and see me in person, the best I have got them to do is accept a urine sample which will look like a cola coloured frothy mix so maybe then - AFTER I show them a negative test for Covid so that they will accept the sample.

I am so worried that I am being sacrificed, that Covid makes me unworthy and I become a statistic

Screwedupsal profile image
Screwedupsal in reply to FiHut

I totally understand where you are coming from.I feel that so many other illnesses and conditions have been pushed to the side because of COVID and it just ain’t right !!Do you have a diabetic consultant you can contact and ask them to do further investigations ?

I have contacted my rheumatologist re my bloods and I am having them repeated through his clinic .

I hope you get sorted

🤞🤞

FiHut profile image
FiHut in reply to Screwedupsal

Thank you for replying, unfortunely no way to self refer myself to the hospital, GP would be very unhappy so I will use the ideas and experiences of others that might help me. I don't know whether to be sad that my GP really doesn't care or angry that Covid has taken away a health service in the way it should be.

horsie63 profile image
horsie63 in reply to FiHut

If your urine is cola colored you are severely dehydrated and may need to go to the ER. Cola colored urine could be indicative of rhabdo which will definitely cause an AKI.

RickHow profile image
RickHow

I assume you are not in the USA (because you say your doctor would not even see you during Covid). And I am not sure how your procedures are (if not USA) for simply going to the emergency room because of what you describe as cola covered urine. Now it certainly can be (the drop in egfr, frothy urine) due to kidney problem (CKD). But cola colored urine can also be caused by liver problems, a UTI, and blood in urine caused by kidney stone, kidney infection, or a bladder infection. If possible, simply go to the ER. There they will perform a complete blood test including a renal panel and you will have your answer. If not, at least go to the pharmacy and buy some urine test strips so you can test your urine. It will show you if you have protein in blood, if your leukocytes are abnormal (signaling probably UTI), and a host of other things, that if abnormal you look on the internet and see the typical cause for such abnormality (for example if "xxxxx" was abnormal you search on "what causes high xxxxx). Call other doctors. You GP isn't the only one in the country.

alan33 profile image
alan33

Hello. I am 58 and my GFR was recorded in May as 54, June as 46 and September as 43. I was diagnosed as Stage 3 CKD. After following a diet for the last month restricting sodium, protein, potassium and phosphorus my GFR has climbed back up to 55. The chart I have says I am still Stage 3 being less than 60. Also found a chart that says in my late 50's I should be near 90.

I am trying to learn about kidney disease and diet. Reading Lee Hull's "Stopping Kidney Disease," I am learning it generally is not diagnosed until we get to Stage 3, under 60 GFR. Also I was told I was not at risk for dialysis. Thankfully I started the diet before I saw the nephrologist. In a month I have improved. If I can improve with diet rather than procedures or medication while avoiding dialysis or a transplant, I will. I've been able to get myself to near normal A1c levels as a diabetic with diet and exercise. My exercise is walking so it is not extreme. Seems that I should be able to fine tune the diet and help myself along the way with CKD.

Skeptix profile image
Skeptix in reply to alan33

As you'll be aware, Lee doesn't exclude medication where it's required. You may have BP or proteinurea or cholesterol and meds can help with those kidney-factors. But congrats on the improvement: much better to be heading up the eGFR charts than sitting on your hands doing nothing except watch eGFR drift inexorably down.

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