Creatinine GFR getting worse in one month-why? - Kidney Disease

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Creatinine GFR getting worse in one month-why?

JohnfromWA profile image
13 Replies

I found my birth father last month and found he died from kidney disease at age 66 in 2004. I am 63 years old and thought I was in very good health. I have had high blood pressure for years but it's been very well controlled with medication. My doctors noticed about a year ago that my creatinine and GFR were abnormal. Finding my biological father died from kidney disease I asked my doctor for some follow up last month and he drew lots of labs, including an A1c. Everything came back normal. No protein in urine, BUN great, BUN/Creatinine ratio great, blood sugar normal, and normal A1c but my creatinine came back at 1.39 (normal high 1.27) and my GFR at 54. I cut down drastically on protein intake and have been drinking 64 oz of water a day. I was in the ER last night having developed a superficial blood clot in my leg and labs were drawn. In the last month my GFR went from 54 to 47 and my creatinine went from 1.39 to 1.50. I have an renal ultrasound scheduled in 4 days. What could be causing such a drastic drop in just those two values in a 30 day period?

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JohnfromWA profile image
JohnfromWA
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13 Replies

Hi and welcome to the community. Speculation can be more harmful than the actual disease, so the first thing I need to caution you is not to worry, and wait until after the tests and then listen to what the doctor tells you. The two leading causes of CKD are diabetes and hypertension. There are other causes but leave that for your physician to determine through diagnostic tests and further blood/urine testing.

Should you in fact have CKD then come back here and we can provide you with a lot of resources to help you deal with the issue of Kidney Disease. Stay hydrated with water, don't do any excessive exercise activity prior to your labs and/diagnostic tests. Be sure your ordering physician knows about all of your medications, including OTC ones and supplements. Since you do have hypertension you might want to go to drugs.com and register for a free account. Once that's done use their MY MED LIST feature and enter all of your medications. You'll be provided with a list of any interactions between each med, food, and which can negatively impact your health, especially your liver and kidneys. If you find anything that concerns you, write down some questions and ask your doctor at the next appointment.

Stay in touch and best of luck.

nellie237 profile image
nellie237

Hi John,

I'm so sorry that you found your birth father too late.

I'm in the UK and we obviously have different lab ranges for creatinine, but you'll see where I'm coming from. The past couple of weeks have been quite dramatic for me too. I had a couple of changes to my bp meds:- losartan was increased from 75mg to 100mg, after 2 weeks bloods taken and showed slight reaction. Then 1.5mg indapamide (thiazide) added - after 3 days I stopped taking them because I felt so ill. Bloods repeated:- GFR had dropped from 73 (before losartan increase had been 82) to 29, and creatinine (Range here is 45 to 84) had gone up from 64 to 155. This was last Thursday 4th March.

My GP took me off losartan immediately and replaced with amlodipine (for now). Bloods taken yesterday:- GFR 57, creatinine 87. More testing for me next week.

Look at your bp meds, even if you have been on them a long time.

JohnfromWA profile image
JohnfromWA in reply to nellie237

The doctor has diagnosed me with Stage 3 chronic kidney disease. I am on amlodipine/benazapril 10mg/20mg l for blood pressure. My blood pressure in the ER yesterday was 154/92 but it's usually a lot lower. I think it was high because the drive on the way to the ER was on icy roads and my vehicle was skidding all over the road. I don't take my blood pressure regularly and maybe I should start.

nellie237 profile image
nellie237 in reply to JohnfromWA

I am really sorry to hear of your diagnosis John, it is a huge shock. Yes, you do need to start taking your bp. My GP advised me today to take my bp morning, noon and night for 7 days......so, X21 in all- then take the average (ie add all the top readings and divide by 21.....same for the bottom) which is what he will start to use to work out what I need. It sounds like a good start and only 1 week away, albeit I will have a sore arm by the end of next week. Any changes in meds will be followed by blood tests.

I've been reading through posts, and people are pro-active with diet etc and they make improvements. Dieticians with renal expertise seem to be recommended. Where maybe we have been a bit slap-dash with monitoring our health I think we now need to pay a bit more attention, and maybe we can reap some rewards quite soon.

I friggin hope so. I feel like death warmed up at the moment.

It seems like different people can have different reactions to different bp meds too.

regcat profile image
regcat in reply to nellie237

Hi Nelli - I'm UK too and have had a recent shock - BP well controlled for years and I'm on a raft of BP drugs and heart drugs. Recent GFR is 33 - cardio says "we don't need to do anything about that". I'm on Candesartan amongst other things. Your experience on Losartan which is the same type of drug and what happened to you - that was a real shock! I had no idea the effect could be so dramatic. I've been on Candesartan for years (and am on amlodipine, bisoprolol, amiloride, furosemide, epleronone, flecainide and apixaban plus a statin - it's quite a list! - especially for someone who has never felt ill, is not overweight, never been in hospital etc.) I'm now waiting for a call from the GP following a further blood test yesterday to see what has happened to the eGFR. I don't know if mine is due to the meds - the cardio says they do effect the GFR but he "can't say by how much" - which doesn't really help! It was really encouraging to see that yours had come back up - I hope it goes up again and again. All the best.

nellie237 profile image
nellie237 in reply to regcat

Hi Regcat, I'm so sorry that you are going through this shock, and thank you so much for cheering me on. Waiting on results to see which way its going is just awful - I understand how you must be feeling and I'm hoping for a good result for you too.

Wow, that is quite a list and there doesn't seem to be a heart med that doesn't impact on the kidneys - so difficult. I will be thinking of you this evening so please let me know how you get on. Hopefully, your GP will come up with a plan.

Do you know what your last GFR was? Have you had iron, folate, B12 & Vit D etc checked recently? I ask because I was diagnosed coeliac at the end of Nov 20, and asked for these to be checked in Jan and I was deficient in everything which probably didn't help my situation.

regcat profile image
regcat in reply to nellie237

Hi Nellie - well its good news! The GFR has come up to 45 and the GP has said that even just one of the drugs I take would impact on the GFR and the fact that I take at least 6 - well she said there is no doubt that these would impact. All my other bloods were entirely normal. I was low B12 some years ago but started taking oral B12 1000mcg daily and it is now fine. My previous cardio (sadly now retired) recommended Vitamin D some years ago and I have taken that ever since. Apparently everyone reacts differently to the BP drugs and they can't say what the impact is on an individual's GFR. She said one patient had amiloride prescribed and their GFR "fell off a cliff edge" and they had to swap straight away. Other than that she has said that the thinking now is that with kidney failure that cholesterol should be really very well controlled - she increased my Atorvastatin from 10mg to 20mg - and that it is all about rigid BP control as well. Also a good healthy lifestyle. I had the most dreadful BP which my GP couldn't control - found it when I was 18 and eventually had heart failure at 47 due to years of less than good control. He decided that it was white coat hypertension so it didn't really need much attention! The cardio sorted it out after a couple of months of trying things and that was 15 years ago - I had to measure it 3X a day to start with to check that the drugs were working, it was very frightening and depressing and there was a bit of chopping and changing - but for the past 15 years it has been fine. They will get yours sorted out too - keep going, don't give in, don't let it win. You can beat this - you are stronger than it, you are stronger than you know! There will be ups and downs on the way - but you can do this. All the best.

nellie237 profile image
nellie237 in reply to regcat

Oh, I was worried for you - now I have the biggest grin on my face😀

regcat profile image
regcat in reply to nellie237

Bless you for that! That is so kind. One thing which might be helpful - if they are trying to bring your BP down and it has been high for some time, don't be surprised if they start very gently with meds. After the acute heart failure I was wanting it sorted out "now"! and the cardio explained to me that bringing it down very quickly was actually dangerous and they had to do it slowly and carefully. He told me that I had to be in it "for the long game", it was going to take time. He saved my life - what more can I say - and he saved it for the long term. All the heart probs sorted themselves out and I have been left with virtually nothing to show for it - certainly nothing that will ever be a problem in future. So keep going - keep measuring that BP, keep recording the results and get onto those meds. There will be some that will make you feel rubbish - but sometimes it's only for a short time whilst your body gets used to it and then you are fine, some will be no good for you and they will change them - but the right combination is out there for you. There are literally hundreds of different anti-hypertensives in lots of different groups which work in different ways - your special set of meds is out there for you. Don't lose heart - please! Keep me posted!!

nellie237 profile image
nellie237 in reply to regcat

Thank you for the very good advice - duly noted. I've got to go for an endoscope on Saturday to do with the coeliac diagnosis and so I had to take a 30min drive to get a Covid swab today. They asked me if I had any heart or kidney problems - so I explained - the nurse's jaw nearly hit the floor which made me laugh. Anyway, there were road closures, howling winds, rain. I got back and my bp was 131/70 - I was most impressed. I'm now stuck indoors until Saturday.

nellie237 profile image
nellie237 in reply to regcat

"He decided that it was white coat hypertension" Funny you should mention that - I had a heart attack age 53 in Dec 2012. The paramedic in the back of the ambulance handed my adult daughter a copy of the ecg and said "Keep that, you'll need it for the next crew who come out" (I'd never been in an ambulance before and the ecg clearly stated check LAD), and when we got to A&E the same paramedic spoke to one of the doctors to say she thought I'd got "white coat syndrome" and I was left in a cubicle. Fortunately the ambulance driver then went over to the doctor and had a word at which point I was rushed into re-sus.

Didn't stop there - I was reviewed by a cardiac registrar who was sure that I had a blockage. The A&E consultant was convinced it was gastric and wanted to send me home. The cardiac registrar had to call his consultant to A&E to over-rule. I had a stent fitted the next day.

It makes me really cross that women are sometimes treated so flippantly by the medical profession.

Whoa, heart failure at 47 - that must have been a very scary time.

I still can't quite believe that we both got better results, and yes, lets hope that they both keep going up again & again.

orangecity41 profile image
orangecity41NKF Ambassador

National Kidney Foundation article on "Genetics and Kidney Disease". kidney.org/news/kidneyCare/...

Jamok profile image
Jamok

Hi John, hope you are doing well. Did you ever find the cause of your kidney disease? If not, I strongly advise you to check out the rarekidney.org website. ADTKD, a recently discovered genetic kidney disease is suspected when there is a strong family history (your dad) and other than an increase in creatinine, most all other labs are normal. I hope this helps,All the best!

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