Hi, i have polycystic kidneys, my creatnine level has come back at 149???

i suffered pre eclampsia with my 3rd daughter 2 years ago and have been on bp tablets since,recently i have had itchy legs, tiredness, no appetite, muscle cramps and an occasional pain under my left breast, i am due to see my gp on thurs but i am so worried with having to repeat my blood test and my creatinine being high. and how do you know what stage your ckd is at??

11 Replies

  • Hi. There is a website where you can tap in your creatinine results and it will tell you which stage of CKD you are at. The web address is renal.org/egfrcalc. I don't know anything about polycystic kidney disease but my last creatinine was 320 which puts me at Stage 5.

  • Thankyou Viviola, it says stage 3. how does this work if my creatinine levels are so up and down? i really dont understand my recent symptoms as my pkd has never bothered me before only had a few kidney infections and the pre eclampsia. i watched my mum go through kidney failure and renal transplant, as well as dialysis, im quite worried. i have a superb kidney specialist but only get to see him every 12 months.

  • Hi Shawry. I would echo what everyone else is saying, although I do think it is important that you keep an eye on what level of CKD you are at. Providing you manage your diet etc as advised by others you may find that you will remain at stage 3 for sometime to come. From my own experience had I known approx. 8 years ago that I was at Stage 3 I could have made changes to diet etc and may have avoided the decline to Stage 5 where I am currently at and facing transplant. If you are worried contact your consultant's secretary and see if you can get an appt. Good luck.

  • Hi , I have polysytic Kidney disease , I am now on dialysis . Your itching will be partly due to you phosphate levels being too high in your diet . Things you need to start doing is reducing any ready meals if you buy them , along with reducing your dairy , chocolate and cola if you take any of them . Ask your gp to let you know which counts are on the high side so you can start to manage your own diet better or if he can refer you to a dietician , who will be able to see you blood test results and guide you better as to exactly which foods , are increasing you blood counts , such as your phosphates , potassium, etc . Reduce salt , coffee are a general guide . along with watching any potassium rich foods .

    All the best

  • Hi, I also have Poly Cystic Kidney Disease an am at level 3b. If you are really concerned with your new symptoms you can always ring the hospital and speak to your consultants secretary. She will be able to get some advice for you and an earlier appointment if you need it. I would ask your GP to do a GFR on your blood when you go to give you an idea of where you are. I find Indian Tonic water helps with the leg twitching and jumpiness as well as the cramps. Follow the advice Pluto has given re diet and that will help too.

  • hi, what im so unsure of is how you know which level your at and what it actually means? I have never had any symptoms or problems other than an infection before so am really panicking... is this the start of renal failure or am I suddenly just having symptoms of pkd?? many thanks for all your answers.

  • I think you are focusing too much on levels and driving yourself mad!! The levels are just there to give a guide for when you need more intervention. I am stage 3 and have been for 20 years, I have most of the symptoms you talk about. I have recently dropped due to having treatment for breast cancer. It is better to concentrate on keeping yourself well and keep your blood pressure under control to help your kidneys. cut out salt and coffee dont drink colas and cut down on dairy. stage 3 is early stages of renal failure you just need to keep as well as possible and try to stop worrying.

  • Shawry, I too have PKD. I was diagnosed when I was 6 months pregenant, which was then confirmed when my eldest was born in 1988. When I was diagnosed I was stage 2, 25 years later I am stage 5.

    I will give all people with PKD, try and reduce stress and worry - I know it is a scary time but I have proved that stress makes things worse!

    Even though I am stage 5 (11% function) my other blood results are in normal rang therefore, I am still plodding on with very little issues. I only itch when I have an infection, the pain is a little worse but then the twins are running out of room.

    If you are on facebook you may want to come join us at facebook.com/#!/groups/1505... (Living with Polycystic Kidney Disease) we are from all over the world and very friendly and someone is always there to help, advise and also give moral support!

  • thankyou for all your answers. nikityler i have joined the group just waiting for approval. i do try not to worry but having seen my mum go through it all and she passed away last year so is no longer here to help me, i feel so alone as no one really understands the disease. and to be honest theres alot i dont really know either. many thanks

  • i have a doctors appointment tomorrow so will know more in the morning hopefully. :)

  • No problem honey anytime. I know what it like not having mum around, mine died from PKD not long after I was diagnosed. Nana and Marie from FB page (both admins) are both very on the ball, you will love it

    Good luck with appointment

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