Ok I have had heart failure for three years now after a MI... Age 60
I have regular 3 monthly blood tests. Each time my kidney function reduces - yet GP has not sent me for a scan or called it Kidney disease. My eGFR was 67, three months later 55 and now below 50, so they are just doing another blood test in two weeks. If its still low I think I should ask for a ultrasound. I understand it can be effected by mudcle mass or protein but thats not in my case.
Any others had a similar issue as I know heart and kidneys are closely linked and curious what happened to you? Is the number reversable, I understand Kidney does not repair itself unlike the liver. I do get a lot of night time itching on face and randomly popping up elsewhere and wee is very dark despite drinking plenty but far worse if I miss a glass of water. No other symptoms.
I have lost a stone in past 4 weeks. I eat healthily always have and I never smoked or drank alchohol. Used to be very fit before attack but clearly not internally.
I know a lot of the heart drugs can damage kidneys, like epleronome that I take.
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HeartyJames
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I think you need to take up these issues with your GP and ask specific questions.Dark pee isn't good if you drink enough and neither is losing weight withous eating a lot less or exercising a lot.
Thanks for your reply... Yes GP (junior doctor) is checking but does not seem overly concerned. She did not even read my medical notes. Anyway, will see what next blood test shows..
As a long term diabetic I feel reduced eGFR is not taken seriously enough. After around six decades of Type I mine had dropped to 69%. The last time I had a diuretic (Furosemide) wsas aftermy bypass in 2018. Then it was only for six weeks. However, when I was on them for months last year (ongoing issues with macerated wounds on my remaining foot as a result of Co-Vid-Toe) it dropped to 35%. At first all I was told was "Your eGFR is down a bit - try to drink more water". Anyway two months after stopping it had returned to 55%. I was refused a blood test recently when I wanted to check both my HbA1c and eGFR as it was apparently too soon after my last one (over three months)!
The dark urine is not good as it should be a light straw colour. Keep on at them and if you get nowhere ring your cardiology people. If you start feeling unwell then 999 as a visit to A&E can get things moving!
Hi I know we shouldn’t have to pay for blood tests but I check my Hb1Ac & eGfr regular by using a company called Thriva. It’s all done in the post and they are qualified and you get a proper GP report each time and you choose when you want to do a test. The instructions are easy to follow and you just prick your finger to put blood up to the level needed. I can’t remember the last time GP did a test on my eGFR and Cardiologist told me they would keep a close eye on me with it. Joy
My husband has severe HF and moderate/severe kidney disease caused by his heart condition & meds. I'm surprised your GP is doing so many tests, are you having them done because of medication changes?
My husband's eGFR had fluctuated between high 50's to 60 for years. However last year he was very poorly & that affected his kidney function massively, he was also retaining a lot of fluid. Because of the fluid he was on & off increased doses of furosemide, the higher dose was massively affecting his kidney function so once the fluid reduced his furosemide was reduced. At one point his eGFR was 31 but it's now stable at 37 & because it's stable they're happy with that. He does still have some fluid retention but it's not getting worse at the moment & his nurse is ok with that!
Like you my husband has been really concerned about the kidney damage. Apparently even though his eGFR is low it is stable now & that's what is important. It's not ideal but you can live a normal life with a low eGFR, it's only when it goes lower than 10 that you will probably have dialysis.
Unless you or your Dr feels there's another issue going on with your kidneys I think it's unlikely they'll do anything. Heart meds are known to damage the kidneys, earlier this year when my husband had fluid that was difficult to remove & his dietetic was increased we were told that his kidneys will have to be sacrificed to save his heart.
Have you recently been started on dapagliflozin? One of the side effects is rapid weight loss l
Thanks for reply... Not on dapa.... Cardilogist requested 3 month blood tests. Its a routine thing for heart patients on lots of meds at my hospital. All the best to your husband. eGFR depends a lot on age as well. The significant trend downward uis what concerns me
Yes, age does play a part as well. My husband's eGFR had been about 50's/60 since his late 50's, if not earlier. He remained at that level until last year, when he was very poorly & his reading went down from 60 to 30's pretty much over night, that was quite scary. His level has fluctuated in the 30's since then. He'll be 69 next week? He's also on dapagliflozin & has lost lots of weight, his muscle mass has completely gone now, hence me asking if you're on dapagliflozin.
I hope your eGFR stabilises soon or, even better, improves. It can happen thankfully, the kidneys are pretty resilient.
This time last year, and for the 2nd time in his life, my husband wasn't expected to survive! And yet here we are, just back from walking the dogs in our beautiful coastal village. Keep that positivity going, it can happen 🤞
I would discuss with cardiologist & nephrologist if needed ,my husband has heart failure for last 5 yrs ,he also only has one kidney so we need to protect it …..he was given advice on how much protein/potassium / sodium in his diet ,daily wgt recordings & his fluid intake he is allowed 1:5 litres daily …..all this has helped us Allow him to control his heart failure with diuretics,whilst not causing further damage to his kidney . So maybe your cardiologist should be following similar lines ,good luck
I had an unexplained plummeting of kidney function, accompanied by soaring BP and weight loss. I was fobbed off by my GP with suffering "CKD", until an emergency hospital admission when a doctor requested a contrast MRI . Renal arterial stenosis was discovered and i had stents inserted. I would urge you to request a referral to a nephrologist or ask if this may be a cause for your gfr score. Good luck.
I have monthly blood tests because of psoriatic arthropathy. My eGFR has been as low as 46 and as high as 65 in the last couple of years. NSAIDs are hard on kidneys and the e in eGFR stands for estimated. The long term trend is what’s important and check if any of your drugs affect kidneys.
Thanks . All the best to you. I always put blood results in a spreadsheet peaks and troughs over 3 years , but trend is accelerating down, It was in 60's and 70's that is pretty normal in 2022 , then last year was only 50's and 60's and this year 40's and 50's but biggest drop in last three months
Good morning HeartyJames. I think you will find there's no way of usually reversing the downward trend of your Egfr numbers. You can slow down the progression by drinking 2 litres of water a day and eating a healthy diet and keeping fit. There is also b.p medication that is more kidney friendly. But obviously you will have to talk to your doctor about all this. There's also a very good Facebook group. Chronic kidney disease uk. Which is run by Andrea and you will get plenty of help and advice on there from people with the disease. A lot of them say g.p doctors don't know much about ckd. Hope this helps. Brian
Thanks.. Seems like the GP does not know much about anything , Never even seen me in person. I do drink enough as was told to , due to my low blood pressure and very careful diet that I never change. I try to exercise but is difficult. All the best to you Brian
Hi James. Following my STEMI back in 2015 I was put on the usual list of drugs including Ramapril. Having previously been okay my kidney function rapidly and steadily declined to 31. My GP and I read that although these drugs are supposed to protect kidney function, in some patients they have the opposite effect.
As soon as I stopped the Ramapril my eFGR stopped getting worse. Now, ten years later it’s steady at around 37 and doesn’t seem to cause any problems. I have annual blood tests and otherwise don’t worry about it.
Do you have any itchiness on face or dark urine? 31 is very low but as others have said, looks like it depends on trend and age . I guess the important thing is to make sure nothing else is going on , as none of us want failure in kidneys.
No itchiness. Did have very dark urine but that was immediately after the STEMI and they said it could be a result of the contrast dye that is used for insertion of stents - which can also cause kidney damage.
They don’t seem to worry about it, nor do I , unless it gets below 30 . And since it has not got worse since 2015 and I am 74 now, I’m hopeful that it will not change much now.
Five stages of chronic kidney disease
Stage 1 with normal or high GFR (GFR > 90 mL/min)
Stage 2 Mild CKD (GFR = 60-89 mL/min)
Stage 3A Moderate CKD (GFR = 45-59 mL/min)
Stage 3B Moderate CKD (GFR = 30-44 mL/min)
Stage 4 Severe CKD (GFR = 15-29 mL/min)
Stage 5 End Stage CKD (GFR <15 mL/min)
Im also on Eplerenone 25mg and my eGFR dropped to 38 but between blood tests has gone back up to normal levels so once again no one can explain why and nothing has changed as far as I can see
Yes I reckon mine will go up. I will post an update Friday.... Its just that downward trend that concerns me and probably need a scan if reduces again, just in case its not anything else going on..... I really do not want to stop epleronome 25mg though.. I am already on reduced entresto and beta blockers due to blood pressure being too low. Good luck to you as always.
James, my Husband has stage 5 kidney disease. He has been given diet sheets saying what he can eat and what he must never eat. The main things which he must not have are salt and things containing potassium, i.e. bananas. Veg should be boiled not steamed. Etc.
Sorry you’re struggling. I unfortunately don’t have anything related to my kidneys pre-MIs, but I have a LOT of data post-MIs to work with, and my GFR has consistently been around the 60 mark ever since. That’s stage 2 kidney failure. My doctors don’t seem concerned for some reason, stating that it’s fine because it’s been at that level for 6 years now - it’s absolutely ridiculous, because I’m only 44 now, and it means I’ll probably need dialysis in my 60’s! I have to pee 16 times a day (yes, I actually counted every day for a week, and that’s the average) and most nights I get woken up in the middle of the night to pee. You’d think I drink litres of water just before bed!
Of course, the NHS’s inability to do any sort of investigation has led me to start doing my own, and they’re probably not too concerned on purpose because it turns out that there’s a list of medications that directly impact GFR, and three of those are given to MI patients for the rest of their lives: NSAIDS (aspirin), PPIs (lansoprazole, etc) and statins (rosuvastatin, for example, is 17% worse for your kidneys than atorvastatin).
Our doctors have a duty of care and should at least take our health concerns seriously and are obliged to tell us if our medications are actually detrimental to our overall health.
I was utterly shocked last year to find Kidney failure stage 2 listed on my records. Absolutely nothing had been said to me. When I queried it I was told the NHS had recently changed the level at which they record it, it was nothing to worry about, they expected kidney function to reduce with age ( I'm only 76) and one of my tablets could also reduce the function. I had been put on furosemide years previously and for about 10 years for swollen ankles but again nothing was ever mentioned about it affecting kidney function. I stopped taking it because it wasn't doing anything for the swollen ankles. I've had 3 blood tests since, always make sure I've drunk plenty before the test and it hasn't altered. Yours needs investigating further because of the dark urine and weight loss. Go to the GP and insist they get to he bottom of it.
Personally, I'd say with your medical history your GP isn't being as proactive as they should be.They are dithering , or saving money , or a combo of both , and leaving things too long before sending you for other tests.
I'd either ring them and request to be sent for an Ultrasound by them now , not later and request an urgent referral to Urology to rule out other issues because with kidney function it's better to err on the side of caution and make adjustments as soon as you can.
If they are resistant say that you'll have to make a complaint to the Integrated Care Board because you don't think that you issue is being treated in an appropriate time.
Or , even consider going to out of hours at the hospital to get a second opinion fast.
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I guess I am lucky as my cardiologist insists on 3 monthly tests by GP...
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