Recently diagnosed CKD Stage 3, Accutane link

[Jjlinden]

2 years after having a blood test my GP told me I had CKD stage 3 which he told me was not a big deal. He told me that I may not get any worse and that I was to have 6 monthly blood tests. He didn't give me any idea what symptoms to look out for so I was left to do research of my own on the Internet. I'm a little nonplussed as to why I have this. I don't smoke, have remarkably low blood pressure, I rarely drink alcohol as it makes me feel ill and I eat pretty healthily, although I do have a sweet tooth! I did undergo a course of accutane 6 or 7 years ago and I now wonder whether this has 'dried' my kidneys out. I have since read a lot of postings from people who attribute this drug to a whole host of health conditions.

[trf1960]

Hi. Like you I was told 'out of the blue' that my kidneys were functioning at 56% and was CKD3a with no explanation of the what, when and how. I am 54. I eventually saw a nephrologist (through private health) who could find no other reason for my kidney damage other than my long-term use of NSAIDS for another problem. After surfing the 'net' I read that NSAIDS are one of the worst drugs for your kidneys. Like you I have very good blood pressure, have never been one for alcohol much and always ate pretty healthily. When I saw my GP he gave me the impression I was over reacting about my kidneys and just told me to "eat healthily" ! I researched everything I could on kidney health etc. including herbal remedies and the like. I now take a whole cocktail of vitamins and herbs etc. and at my last check up my kidney function had improved slightly to 60%. Laughably my GP told me my kidneys were now "normal" ! Now I know from research that kidney function can fluctuate so I am having another blood test done this month so it will be interesting to see if it has gone down again but anyway, here's hoping.

[Jjlinden in reply to trf1960]

Thank you for your very interesting reply! I also have taken NSAIDs over the years for various reasons, 2 frozen shoulders, foot surgery etc so that could be the reason I have this. I do wish i had known more about the risks at the time but I don't think I overdosed at all. I too had a slight improvement, I think it went up by 2 and GP said they have been known to 'self heal'. I need to go back and see whether or not I still need 6 monthly tests because I forgot to ask at the time! I gave up using salt and used low salt instead but was reading something the other day that warned against that because potassium could be a problem! The GP never mentioned that at all! Honestly, I got no help from him and you know that if you go in spouting info from the internet they get all funny with you.... I'd be interested to know if you feel any symptoms. I get tired and I've noticed that I get thirsty and the skin on my lower legs have dry patches, all things that I've read you can experience. I must admit to not taking things in when I last saw him, I think my level had gone up to 52, it doesn't say on the printout of the blood test he gave me. Good luck with the blood test 👍

[Sally57 in reply to trf1960]

Wow. I think we have the same dr. My GFR was 51 and creat. 1.09 and his comment was to eat healthy and get some exercise. Raisin bran is not healthy with my gfr. I got a referral to a nephrologist, record release had been done and I'm waiting for a call back. My gfr has dipped below 60 twice before with no comment from Dr. I haven't felt good for a while and now I feel like all the puzzle pieces are fitting together. I've changed my diet, but my husband might starve! Lol he's not impressed with what I'm eating. I'm still working on what to order when I eat out. Each restaraunt is a research project. My cholesteral was up but no statins until they do a recheck in a couple of months (I tried them years ago- yuck). Your questions and helpful comments are comforting!

[cmcginily in reply to Sally57]

Hi Sally

Statins are recommended for all people in renal failure. They help the kidney in some way. I have been taking them for some time and have been fine. Ok I get some aches and pains but in my view if they are supporting my kidneys in any way I will put up with it.

Stay well Christine x

[Bluebellgirl in reply to Sally57]

What is it with some GPs - do they just do a weekend correspondence course in medicine!!

[Bout5 in reply to trf1960]

Hi, I really like your testimony. How can I get help from you?

[health55]

I am 52 and just been told I have stage 3 CKD, I was informed that I will need 6 monthly checks to keep an eye on things, I was not given any advice on any sort of treatment or management, just told not to worry and it was very possibly caused by the chemotherapy I needed a few years ago.

[Jjlinden in reply to health55]

That is sort of ringing a bell as I found out recently that Accutane is also a chemotherapy drug. So with a ten month course of that and numerous occasions when I needed lengthy courses of NSAID s, my poor kidneys didn't stand a chance!

[Sally57 in reply to health55]

I've been reading up on what to eat at stage 3a. I now have a kidney health app on my phone and I signed up for davita.com also joined health unlocked. I have taken the eating/diet advice to heart and I'm not gaining 5-6 lbs over two days. I also slept through the night last -didn't have to get up a 4:19 to pee! The diet change has not been easy, it's a total switch. I want a bloody mary in the worst way now that I can't have one. .. but I also want to live to a ripe old age and I feel better. My husband isn't as on board with the diet change, he doesn't cook, and he was ecstatic to get real food last night - a Stouffers lasagna. I had a salad which I thought was delicious. His kidneys, his heart, his problem- he's healthy (of course he is, he doesn't go to the doctor). I referred myself to a nephrologist (got a dr referral same day)and in changing back to an internist who specializes in hypertension. He talks too much about my school district (I teach), but that will be my cross to bear for him to pay attention to my health. Good luck!

[cmcginily in reply to Sally57]

Sally there is no reason that you can not have a bloody mary every now and again, it is only when your potassium levels are affected that you need to cut out things like tomato, banana, low salt.

I am in stage 3b due to poly cystic kidney disease and see the consultant and dietician regularly. My diet is very much normal, I have 2 days a week meat free. I limit the amount of dairy, don't eat any of the low fat products out there. I do not drink cola's coffee or anything containing caffeine. I drink up to 3 litres of water a day. I only have an occasional alcoholic drink On the odd time I use salt it is natural sea salt. I eat red berries and watermelon every day. At my last appointment my eGFR had gone up from 39 to 45. Please do not make yourself a martyr to CKD as long as you are careful everything in moderation is ok. You need to enjoy this time as if it ever comes to having to have dialysis you will be very restricted

Best wishes Christine x

[Jjlinden]

Hi Sally. Do you live in the U.S.? If yes, things are a little different over here in the UK. Apparently we don't get referred to a specialist until we are stage 4 or more. Doctors just don't think stage 3 is a big deal. My GP said I don't need to change my diet or stop taking over the counter painkillers! He even said low salt wasn't a problem even though I had read that as it is high in potassium, it is not good for the kidneys. I subsequently saw a different GP who confirmed this. I've stopped adding salt to meals But still use good quality ready meals a couple of times a week. If I consume no salt at all, I get awful leg cramps. I'm waiting to talk to the doc about my latest blood test. When I rang for them this afternoon, the woman I spoke to said 'it's all normal'! How can they be normal when I have stage 3 CKD? This is what we are up against. Wouldn't you think the medical profession would want to try and prevent people having to have dialysis or transplants not least because of the cost? When I saw the GP a couple of weeks ago, I asked about my kidney disease and she said 'what kidney disease? '😖😬 talk about confusing! I've been doing the 5:2 diet since the New Year and I've lost a stone in weight, the GP said it was ok to do this. I do get quite tired periodically but I did for quite a while before I started it, and put it down to CKD. Apart from that I feel better for the weight loss.

[cmcginily in reply to Jjlinden]

Hi there

Potassium is not a problem unless your bloods are showing a problem. I have never had a problem so eat a healthy diet and do not avoid high potassium foods. Best thing is to see a dietician, ask your gp or you can see the dietician at your renal appointment if you have been referred to a consultant.

[Sally57]

That's what triggered my really examining my labs. I was trying to lose weight but when I weighed myself the numbers were all over the place. Up, down, back up again. It was all fluid. I'm sorry you can't get drs to listen. Education at stage 2 would have been helpful and maybe I wouldn't have gotten to stage 3. I've taken way too much ibuprofen while waiting for knee replacement and migraines. I would reduced dose or gone with name brand. There's a lot of things I probably would have done different if I'd known. At least the puffiness in my face has gone in the mornings and my feet aren't swelling nearly as much. Good luck and keep those drs on their toes!

[trf1960 in reply to Sally57]

Hi Sally57 and Jjlinden, I am intrigued, what is the kidney health app that you have? have never heard of that but it sounds interesting. Well, I had my second blood test done earlier this month and apparently there has been no change and my GP said I am still at 60% but like everyone else, she just keeps telling me that my kidneys are normal. It so annoys me because they treat you like you are a hypochondriac and yet it was a consultant for another problem I had at the time who told me to see a nephrologist (not my GP !) regarding my kidney health. Anyway, I have a BUPA wellwoman assessment at the end of September so will get them to do a more detailed report on my kidney health if they can. That is my other complaint with my GP though, as she won't give me any of the details and when I asked her if I could have a copy she said "oh no, it will cost too much to have a detailed report" - like what !! Onwards and upwards as they say....

[Jjlinden in reply to trf1960]

Hi trf1960, what wouldn't the GP give you a copy of? I asked for the results of a very detailed blood test and he just printed it off. It's been very useful as I find I am unable to take everything in during the appointment and can refer to it when doing my own research. I only recently found out about the potassium connection and that had also been tested so was able to deduce that the levels of that we're ok. All for just the price of a sheet of paper. I do feel that a lot of gp's think we are hypochondriacs though. They look at you as though you are completely mad! Yet they are the ones telling us that we have CKD stage whatever!

[trf1960 in reply to Jjlinden]

She wouldn't give me a print off of the results of the blood test but I am definitely going to insist on something the next time I have one which will be in December with her. I have asked her previously about potassium levels and she said mine were normal - and all my levels came up normal when I was seeing the nephrologist so I am at ease with that. At least when I get my results from the wellwoman assessment I can take that with me and get her to compare the results.

It just makes me laugh though - I am sure my GP still thinks I am concerned about nothing as she seems baffled that someone my age (55) with no family history, good blood pressure. no diabetes and no symptoms could have kidney disease. When I initially told her what the nephrologist said about damage through NSAIDs as the only possible reason she said she had never heard of that in all her years as a GP and that all of her 20 or so patients with kidney disease have it due to the usual causes. Well hello, here I am, your first !! I do like my GP as she is lovely in every other sense but I may visit one of the others in the surgery next time to see what their response is.

[Sally57 in reply to trf1960]

It's called My Food Coach. The icon is orange and has a kidney on it.

[Jjlinden in reply to Sally57]

Hi Sally, I've just tried to download the food coach app and it asks for a zip code, which we don't have in the UK. Even just tapping in some numbers doesn't work, the keypad won't go away and I can't start using the app until I've put in a zip code! Any ideas? Would a random zip work? Trouble is, I don't know any...

[Sally57 in reply to Jjlinden]

61073 use my zip code

[Jjlinden in reply to Sally57]

Thank you! That worked a treat!

[mombcp in reply to Jjlinden]

Mine is 16686, hope it helps you.

[Bluebellgirl in reply to trf1960]

Your GP sounds a real arse. Go back and say what price can you put on your life. I bet if it were her life she's get the best. Why is she better than you? You are as worthy as her. Good luck xx

[cmcginily in reply to Sally57]

Hi Sally

It is hard when you are in pain, you really need to avoid all anti inflammatory drugs. Ibuprofen, Nurofen, Diclofenac, both tablets and creams. Stick to paracetamol and codeine. I find heat helps, patches and hot water bottles too. Avoid caffeine so no coffee, coke a cola, Tea. as these to can lead to damage.

Stay well Christine

[Bluebellgirl]

I can agree with trf1960.

I think your GP is wrong saying you are over reacting. My GP had been prescribing a cocktail of antibiotics for about 15 years for a problem with my bowel. Eventually he sent me for a CT scan which showed I had a stricture (scar tissue) in my bowel due to constant inflammation. The CT scan also showed I had a 'cyst' on my right kidney. I was told there was a possibility that it was 95% cancer and the kidney had to be removed. It was removed and I didn't have cancer. Now my other kidney is fluctuates from 27 to 39. At the moment it is 36. Look, this is your health don't make the medical profession life easy, demand help. It's your life.

Ask your GP/practice nurse what your creatinine levels are - mine are high so check out what you should do for this diet-wise. I was sent to a dietician who went through everything I ate and her only advice was eat Weetabix for breakfast instead of bacon!! I obviously knew Weetabix was better for me but we all like something nice once in a while. She was nice but a waste of space.

Take care and good luck xx

[zzdaleo]

I was just told today that I have CKD 3 with a GFR of 53. What the hell does all that mean? Should I shop for coffins?