Newbie with 58 egfr… what next?

[OudMood]

Hello everyone!

I am posting this on behalf of my hubby, he is about to be 42 and for about a year or so he had been feeling a bit off (mostly tiredness, lethargic, not a lot of drive to do things, etc - he even lost some weight without trying and with no changes to diet or lifestyle) which very unlike him.

We have a varied diet while eating a bit of everything and he exercises daily.

He is of South Asian ethnicity which puts him at higher risk. He is slender built and not overweight.

We went to the GP for testing and we have done quite a bit of it as the initial tests suggested possible inflammation, high cholesterol and reduced kidney function.

Our diet doesn’t justify his cholesterol..

Since test 1, we did more testing and in just 2.5 weeks his kidney function has dropped significantly. From 77 to 58!

Function was also reduced last year at 79 (but wasn’t flagged up and we didn’t notice either, so it was stable but then suddenly dropped).

I’ll post the results below for comparison.

The GPs we have seen didn’t seem particularly concerned (which worried me) although they’ve agreed to refer for a scan (which may take 1-3 months) and repeat blood test in a few weeks.

My worry is that if function managed to drop so drastically in 2-3 weeks what could happen in a further 2-3 weeks?

Based on some of the research online, it seems we SHOULD BE CONCERNED and act quickly.

————————————

Results 23 June 2022

Above range Red blood cell count, haematocrit, eosinophil count.

Renal function tests

Serum sodium level - 139 mmol/L [133.0 - 146.0]

Serum potassium level - 4.2 mmol/L [3.5 - 5.3]

Serum creatinine level - 103 umol/L [60.0 - 125.

eGFR using creatinine - 77 mL/min/1.73m2 [> 89.0] ❗️

A1c - 36 mmol/L

Serum urea level - 5.2 mmol/L [2.5 - 7.8]

———————————-

Results 12 July 2022

Result

Erythrocyte sedimentation rate - 22 mm/Hr [0.0 - 17.0] ❗️

Serum calcium level - 2.38 mmol/L [2.2 - 2.6]

Serum inorganic phosphate - 0.87 mmol/L [0.8 - 1.5] ⚠️

Serum adjusted calcium concentration - 2.33 mmol/L [2.2 - 2.61]

Serum alkaline phosphatase - 79 U/L [30.0 - 130.0]

Serum total protein level 78 g/L [60.0 - 80.0]⚠️

Serum albumin level - 44 g/L [35.0 - 50.01]

Serum globulin level - 34 g/L [19.0 - 35.01] ⚠️

Serum sodium level - 137 mmol/L [133.0 - 146.0]

Serum potassium level - 4.0 mmol/L [3.5 - 5.31

Serum creatinine level - 130 umol/L [60.0 - 125.01❗️

eGFR using creatinine - 58 mL/min/1.73m2 > 89.01 ❗️

Immunoglobulin G - 13.7 g/L [5.4 - 16.1]

Immunoglobulin A - 3.96 g/L [0.8 - 2.8] ❗️

Immunoglobulin M - 0.71 g/L[0.5 - 0.9]

So my questions are:

- Would you be concerned?

- Should I ask for any further tests?

- Where can I seek further advice?

- is there a way to be referred to a specialist?

- What’s the process of being diagnosed with something like CKD (for example) ?

Lastly, if these were your results, would you feel comfortable to wait say 3 weeks for another blood test and appointment?

We’ve asked a lot of questions to the GP and they weren’t a concerned as I said, but my gut feeling is telling me that something isn’t right effectively.

[Bassetmommer NKF Ambassador]

HI,I would say you should be concerned and make sure they follow up with more testing. Waiting three weeks is not really an issue. Doing tests too soon will not show much difference. What the doctors are looking for is if there is a steady decline. The process is various labs done over time. And then there are things like scans to look for more issues.

Make sure your husband does not do any strenuous exercise the day or so before his next tests and labs. Make sure he consumes LOTS of water up to the night before. If the tests are later in the day, make sure he is hydrated.

Don't let the GP dismiss you. You will have to advocate to get what you need at this stage. But once diagnosed, there are things that can be done.

For now, also have all if any medications checked out to see if there is any that might be causing his issues. If the doctor won't help you with this, go to the pharmacist. Ask is everything here renal safe?

It is a process. We are here to support you.

[Seoulito]

Hello,This is completely anecdotal but most most recent tests were as follows:

2016 - 83

2018 - 83

2020 - 58

2020 - 80

2021 - 74

2022 - 71

As you can see there was one test that was randomly lower. The doctor said it was probably a lab error. I’d ask for a retest.

[Seoulito in reply to Seoulito]

*my most recent

[RoxanneKidney in reply to Seoulito]

Or it was something your ate ...this number is based on creatinine and age. So it will naturally go down with age...but the trend down should not be drastic. ..for a lot of us with ckd, the trend is drastic.

[medway-lady]

In the UK things are a bit different to America so your GP is best placed to advise you and its right test again in a few weeks and wait and see. Of course he could crash but it is a different question, as too can that be prevented? If it could be then kidney disease would not exist. So kidney function can vary on a day to day basis and can be down to simply not drinking enough. With regard to symptoms I'd doubt he have any so perhaps you need to ask about inflammatory conditions and yet he could just have had a virus and that increases CRP. But to put your mind at ease I'd probably ask about Rheumatoid but to be frank I think it's one step at a time and above all no panic. If the GP is involved then things will progress and not really much else he can do. If he feels ill it could be a good idea to keep a diary and simply avoid low salt salt, bananas and baked beans. It might be a good idea if he takes any prescription medication to see if it can cause kidney issues but even then it's just a might do thing. I'd suggest you just wait and see and don't Dr Google as often that can be misleading at best and frighten you without any real evidence of your husbands problem if indeed there is one. We are not medically qualified so the test results really need to be looked at by the professional who ordered them and so please be guided by your GP.

I'd add that I am in the UK and if your husband needs to see a Nephrologist then he will be referred and we have a great NHS that will help him but I stress he is a very long way from that.

[Sammi_n_Munk]

Yep. Everything you’ve heard here so far is all correct to my knowledge. Before his next blood draw, be sure he’s not using any anti-inflammatory medication (ibuprofen), either over-the-counter types, or prescribed (he needs to speak to his GP about any of these for chronic pain). But such pain meds as Advil, Motrin, Aleve and even Aspirin, can be damaging to our kidneys. Tylenol is what is mostly recommended for pain relief, as it is processed by the liver and not the kidneys.

And drinking plenty of water daily to remain well hydrated is very important. He can ask his physician about how much would be right for him to consume daily. Dehydration is very harmful to the kidneys. Sometimes, we just don’t realize that we’re not drinking enough. eGFR levels do fluctuate daily, and how much we drink can impact that.

I hope you’ll find this helpful. Wishing your husband and you both, all my best! Please do keep us posted. God bless. 😊🙏

[RoxanneKidney]

The protein leakage is only going to get worse. And is the indicator for how rapidly the disease is progressing. go on a low protein plant based diet and ask for a 2.5 MG dose of lisinopril ...drink water and give him about 3 weeks to adjust to the meds. His blood pressure needs to be as low as possible. ..like 100/60 ...LOW. That keeps the preassure off the kidneys. That pressure will enlarge them to the point they eventually shrink and die.

[KidneyCoach NKF Ambassador]

Definitely look at kidneyschool.org Blessings

[missdc]

Hi there

I am not a doctor but I, too, obsess over results because sometimes they are quite different if something is "off"..

1. Have they tested his thyroid? Low thyroid can make cholesterol etc high and hard to change. Either way, my doctor has me taking vegan Omega 3 - you can find them in health food stores or vitamin stores. I also take plant sterols daily.

2. My blood pressure is tied to kidney function, and it has SO MUCH to do with how chronic kidney disease progresses. I noticed the sodium level is ALMOST high, I'd suggest lowering sodium (I do 1200mg a day) and also start checking his BP to see if it is high. One reading at a doctor's office isn't enough to diagnose high BP, you have to take readings daily.

3. Also I'd lower protein intake, too much protein can be dangerous

Some of your readings also indicate inflammation/autoimmune disease which can be systemic or in a specific part of the body.

You need to be able to see a renal doctor/nephrologist. Some CKD is CAUSED by other kidney diseases (like mine.) Only a renal doctor will be able to truly read your labs and diagnose if something else is amiss. Please try to insist on a referral.

[RonZone]

Hey, just saying hi and welcome to the forum. Lots of good info here. I also have had a steady decline in my eGFR for years with some "bumps" along the way, so I'll just second the notion that additional tests will give a better picture, but if the next test (hopefully not too far in the future so you can have some peace of mind or more info to go on) will add to your knowledge and give you an idea if it's something to be immediately concerned about or if it's a more gradual process for which you will have plenty of time to read and become more knowledgeable about which path you should take going forward.

[Whitetail66]

One thing that you might want to have checked out is if he has any sleeping conditions, like sleep apnea. My story is very similar to your hubby’s. I just felt ‘off’, with low energy levels and various other symptoms like muscle fatigue, etc. While talking to my nephrologist, she said that at stage 3b, it shouldn’t be affecting me like I was describing. She said that my lack of energy and other symptoms could be caused by sleep apnea. I did a sleep study, and found out today that I do indeed have mild sleep apnea, and that they want me to start using a CPAP machine. I guess that I will find out if my symptoms are indeed caused by sleep apnea, rather than ckd. I’m kind of hoping it’s sleep apnea, and not the ckd causing the fatigue. Btw, you can read the test results on your own, and decipher their meanings. I taught myself to read the results by researching how to read them, and what they mean. Super easy to do. There is nothing wrong with trying to educate yourself, and be proactive. I like going into an appointment with as much knowledge as possible. I have a friend who’s gfr has fluctuated from stage 2 to stage 3, and back up to stage 2. As others on here have mentioned, when your husband goes to have blood drawn for tests, it is best if he avoids heavy exercise, as this can throw his true numbers off. Remember that those test numbers are a snapshot of one day, so they can vary from previous results. Gfr’s can go up and down. Can you be referred to a nephrologist? If so, I would do that, as it sounds like you haven’t seen one yet. But the best piece of advice that I can give you, is to best your and your husbands best health advocate! Far too often I hear of people who are not happy with their doctor, and just accept it. My first nephrologist was pretty much useless as far as educating and being proactive. I fired him, and got a new nephrologist, and she is AWESOME!!! Listens intently, asks a lot of questions, and genuinely cares. This is how I got the sleep study done, because she kept after me to do a sleep study, and finally wore me down.😆 Best of luck to you and your hubby! Btw, I think it’s awesome that you are as supportive and proactive as you are for your husband. Awesome!