Declining GFR: My GFR has declined from 5... - Early CKD Support

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Declining GFR

angedogs profile image
24 Replies

My GFR has declined from 52 in October to 36 last week. I am on quite a lot of prescription medication which I feel is causing this drop but my doctor is reluctant to stop or reduce any of it although she has agreed to refer me to my local Renal Unit, but only because I am feeling very nauseous and have lost my appetite. My question is has anyone else experienced this? Is nausea to be expected at Stage 3b and what sort of treatment, if any, will be given by the Nephrologist?

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angedogs
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24 Replies
Dreamer12 profile image
Dreamer12

Hi there sorry to hear your eGFR has dropped quickly... mine went from 48 to 37 in 8 months due to anti-inflammatory tablets but resumed back to 48 afterwards. 😀

angedogs profile image
angedogs in reply to Dreamer12

Hi Dreamer12, Mine did drop from 54 to 38 last autumn and a couple of my meds were stopped by a hospital doctor. I had to keep going to the day ward every two to three days until my levels went back up to 58 but they put me back on the same medication causing my GFR to drop even lower this time.

madonbrew profile image
madonbrew

Hi,mine initially dropped from 84-44 within 4 years, and I got referred to the nephrologist about 5 tears ago. The cause of mine is a totally rare thing,but since seeing the neph the drop in my egfr has stabilised significantly ...it's now 37, and I am 40 years old.

I think the biggest thing is finding what is the cause. When you see a nephrologist they will possibly reevaluate your meds.

Hope you get seen to soon!

Dee

angedogs profile image
angedogs in reply to madonbrew

Hi Dee, From what I have read, GPs don't usually refer to a nephrologist until we get to Stage 4 (15% to 29%) so you are lucky to have such an understanding GP. Mine was going to let it go and just keep following up with blood tests and it's only because of the nausea that she decided to refer me. I am almost sure it is one or more of my many meds causing it so hopefully the nephrologist will be able to advise. Thanks for your comments.

madonbrew profile image
madonbrew in reply to angedogs

It was because I was quite young I think...probably about 33 at the time. Also I have another autoimmune disease which attacks my organs so they had a slight head start.

angedogs profile image
angedogs in reply to madonbrew

Yes, being so young does explain why they took further steps and you got a referral. I have Hashimoto's which is an autoimmune disease but no one has connected it to my kidney or liver problems. I did have hypertension which can also cause kidney problems but it is now under much better control.

madonbrew profile image
madonbrew in reply to angedogs

Wow I have never heard of Hashimotos. Might be worth asking when you finally see the nephrologist if they could be related to your other problems.

Take care&I hope things get sorted for you soon! Keep us updated!

angedogs profile image
angedogs in reply to madonbrew

Hashimoto's is an autoimmune disease which slowly destroys the thyroid gland and causes hypothyroidism. I have a feeling I have other autoimmune diseases as an ANCA test came back positive but wasn't followed up and I am undergoing tests for rheumatoid arthritis at the moment. I will mention it to the nephrologist when I see him/her as it may have some bearing on everything else. I am glad your kidney function has stabilised and I hope you are getting the right treatment for you autoimmune disease too. Thank you so much for taking the time to answer.

madonbrew profile image
madonbrew

I also feel nauseous at stage 3b! And very tired...although I've just had an iron infusion.

angedogs profile image
angedogs in reply to madonbrew

Hi madonbrew, Yes, I am very tired and fatigued. My folate is low but I don't think I am anaemic so I have put the tiredness down to having hypothyroidism and other chronic health conditions. Thank you for your reply.

MAS_Nurse profile image
MAS_Nurse

Hi angedogs and thank you for your post. Loss of appetite and nausea are common symptoms in kidney patients and this has many causes. These symptoms can be managed so it is good that you are being referred to your local Renal Unit. You will be able to discuss your symptoms with the nephrologist and your medication will be reviewed. You may also be able to able to be referred to a Renal Dietician who will be able to give further advice about diet. Please stay on this caring forum where you will receive support from other members.

You may find the following website helpful--

Chronic Kidney Disease-NHS

nhs.uk/conditions/kidney-di...

Are any other members able to help angedogs, please?

Thank you and best wishes.

angedogs profile image
angedogs in reply to MAS_Nurse

Hi MAS_Nurse. Thank you for your comments, advise and also for the link. My GFR has been going up and down for years but this is the first time it has gone this low and caused symptoms. I am glad I have finally been referred to the Renal Unit because in the past all my GP has done is take blood tests without any action. This is a great forum and I will definitely stay on it. Thanks again.

RickHow profile image
RickHow

Without knowing your age or what medications it is hard to really give you good advice or our own experience. My first reaction was why would your doctor not want to investigate if one of your meds is causing the "problem" (not feeling well, tired). Those are common side effects of many, many, many meds. And meds also can dramatically affect kidney's and your GFR. But again, your meds may be absolutely necessary for whatever reason you are taking them, but without knowing your illnesses, your meds, and your age we are blind. What would a kidney doctor do? Well again it is impossible to say. I found that basically my kidney doctor provides me absolutely no different or better advice nor testing than what I already knew from my primary care and my urologist. (I am stage 3b). In fact my urologist feels it is not even necessary to see a kidney doctor at this time. There is no value add. However I think it is good. I use it as a second opinion. I never tell the kidney doctor what the other doctors say, advise. This way, when they all same the say thing (good or bad) I have faith in there words and direction. If told something conflicting then I can confront the difference and understand the right direction. What treatment will you be given? Likely none. Probably further tests such as an ultrasound or more intensive urine testing (not just a dipstick test). Advice on a diet (avoid red meats, etc.).

angedogs profile image
angedogs in reply to RickHow

Hi RickHow, I am 64 and on the last test creatinine was 135 and GFR 36. I have quite a few chronic conditions including heart failure, cardiomyopathy, hypertension, high cholesterol, hypothyroidism, gouty arthritis and depression (all controlled by medication) and also liver fibrosis and sleep apnea which are not being treated with meds. Some of these conditions cause extreme tiredness but so do some of the meds which also cause other side effects. My doctor seems to think it is easier to stay on the meds regardless of any damage they are doing but I feel they are the cause of my kidney, liver, high cholesterol and gouty arthritis problems. She has already warned me if I come off them I could have a stroke or heart attack.

I had a urine test last week which came back as follows:

Urine creatinine: 18237 umol/L

Urine albumin: 13 mg/L

Urine albumin:creatinine ratio: 0.7 mg/mmol (normal: 0.0 - 3.5)

I have been told this is in the normal range so I would think there is no need to see a urologist? I have already changed my diet by lowering carbs and sugar but I do have some protein including red meat so perhaps that will be the next step although I will see what the nephrologist says first. Thank you for your response.

RickHow profile image
RickHow in reply to angedogs

With all your chronic conditions it is quite likely that your egfr is being strongly influenced by one of your medications or other conditions. Especially considering all your urine testing is normal. It will be great to learn the kidney doctors opinion. You mentioned thyroid. This has an absolute affect on your kidney function. Even a perfectly "normal" kidney can perform "incorrectly" if the thyroid is off. One step at a time. Lets see what the kidney doctor will say. Do not fear the appointment. It can be informative. Additionally you mention many cardio conditions. I assume you see a cardiologist. He/she should also be able to advise you on if any of your current heart medications are affecting the kidney/egfr.

angedogs profile image
angedogs in reply to RickHow

Yes, I do see a cardiologist but it has been a few months since my last appointment. I do know the thyroid can have an effect on some organs such as the liver and heart but wasn't aware that it could affect the kidneys but what you say does make a lot of sense. All of my nine medications mention using with caution if there is decreased kidney or liver function and I can understand needing to stay on the heart meds but hopefully the kidney doctor will agree that I don't need to be on Allopurinal for gout as there are aches and pain in my joints, high uric acid but no actual signs of gout. Also, the statins are not really necessary as I can control my cholesterol with a better diet. Thank you again for taking the time to answer my questions.

Dreamer12 profile image
Dreamer12

I’ve always found the Nephrologists very thorough and you can tell them which meds are affecting your kidney function. Hopefully they will get everything sorted for you. Take care x

angedogs profile image
angedogs in reply to Dreamer12

Did you have to wait long to see a Nephrologist? I was only referred last week and knowing my health authority it could be months before I see anyone. I am having another U & E blood test tomorrow so at least I will know if there has been any further deterioration.

Dreamer12 profile image
Dreamer12

Think was around 3 months x

angedogs profile image
angedogs in reply to Dreamer12

Thanks

Gorsemoor profile image
Gorsemoor

I’ve been at stage 3b for twelve years and feel fine even dipped to GFR of 26 once but never felt nauseous only symptom just a slight itch.

I dropped taking aspirin it really improved my GFR and avoid any pain killers plus watch diet just a little red meat I eat mainly fish plenty of fresh fruit particularly Blueberries,apples ,red grapes and cranberry juice,avoid bananas and grapefruit and of course keep the big danger under control,blood pressure, keep it below 130 over 80 and you should be ok

angedogs profile image
angedogs in reply to Gorsemoor

Hi Gorsemoor, Thank you for your reply. Unfortunately I didn't stay at stage 3b for long. I had another blood test on Monday and my GFR is now 24 which is Stage 4. I am hoping it is only temporary and goes back up. Not sure what I can change though as I have already cut out all sugar and I am on very low carbs with minimal red meat. The only medication I take is my prescribed ones so I can't help feeling they are to blame. My GP sent an urgent message to the Renal Unit and I heard from them today with an appointment for Tuesday. I will report on here once I have had my appointment.

Godismystrength profile image
Godismystrength

Hi. I had a similar experience, if you read my original posts, you can catch up on my scenario. I had the doctor run a blood workup 3 weeks later, along with a kidney ultrasound. Turns out that the antibiotics that I had taken for a bladder infection just prior to my first blood test, three off my valves. My gfr went up 25 points to normal levels, a CD my creatine went down to .9. The doctor had assured me that the drugs couldn't affect it, but that is not true, they can throw values off up to two weeks. My med. Had been finished for 24 hours. It was trimeththorin 160 mg. Plus, a sulfa drug combined with it. Ibuprofen is very hard on kidneys also. Hope this helps.

angedogs profile image
angedogs in reply to Godismystrength

Hi Godismystrength, My GFR hasn't been at normal levels for about 4 years now. Since I started my heart and blood pressure medication it has fluctuated between 42 and 58, but mainly at the lower end. The lowest it dropped to was 38 last year but I know that was due to an inexperienced GP duplicating one of my tablets with another very similar one. In the space of just two weeks it has now dropped from 36 to 24 so I am very concerned. I have now had my referral marked up as urgent and thankfully I am seeing the Nephrologist on Tuesday. I share the same feelings as you that the meds are the cause of it. Hopefully, it can be reversed once they find out which one or ones are the cause. Thank you for responding.

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