Low eGFR/High creatinine

Hi. Can anyone help me...sorry to be a pest but I only have one kidney now and my eGFR is 36 and going down and my creatinine level is 131. I eat a healthy diet... fresh veg, fruit, salad very little meat and no processed food. I'm always cold, tired, have a constant headache and feel awful most of the time. Does anyone have an answer what could raise my eGFR and lower by creatinine? Thanks xx

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  • Hi Bluebellgirl, I too have only 1 kidney , I had an op about 2 years ago,(I am 72 now) all a bit of a shock at the time , just after the op my eGFR was 24% and at the last reading in June had miraculously gone up to 29%. The specialist I have seen seems pretty pleased with that, and has not put me on any special diet. My creatine is now at 153. On the information sheet I have it says about creatine 120 to 200 = mild to mid. kidney failure; 200to 300 = moderate to severe. So by that I shouldn't think that you have to much to worry about, but of course I am no expert. I get a lot of help,comfort and advice from the Women's Renal Failure Support Group, on facebook , we are all in the same boat. Hope you get on o.k. Jillab

  • Hi Jillab. Thanks - your answer was helpful. I had my kidney op about 18 months ago. I went to a renal dietician about six months ago - she was nice but quite frankly not very helpful. She asked me what I was eating daily. I told her. All seemed OK except I had bacon for breakfast. She said eat Weetabix instead of bacon. I do now. eGFR descending.

    I see a renal consultant every 3/4 months. This is less than useless. Just says things like 'eGFR has gone down , blood pressure ok. See you next time'. Waste of time going as my GP can say that.

    I suppose I am looking for a magic 'cure'. I need to get real.

    Thanks for your help xx

  • Hi Bluebellgirl, I don't know if your specialist would do this for you, mine did and also a lot of the renal ladies use this too, my specialist introduced me onto a site called Patient View.org. it really is worth going on, when you have a blood test all the results are recorded on this site and you can look up your results which will show , creatinine ;K=Potassium; Ca=Calcium; PO4= Phosphate; Hb = Haemoglobin; wbc= whiteblood cells; plats=platelets; eGFR =estimated GFR; there is also lots of advice on the site too, hope that helps a bit.xx

  • Thanks so much. I will have a look. The nurse who takes my blood at the GP surgery is very good and will tell me the results.

    Take care. xx

  • Kidney and thyroid issues are very connected (I have both). Your symptoms could also be your thyroid "cold, tired, headache". It could help if you had a FULL thyroid panel and post the results on the thyroid leg of the Healthunlocked.

    Good luck!

  • Thanks Margo. I had a thyroid test and all was OK. I had to had a bowel resection late last year because of a stricture due to scar tissue as I had infection after infection. My consultant is less than useless. Just says things like 'eGFR has gone down. See you next time'. Waste of time going. Take care. xx

  • As you said your consultant is useless. Have you seen your "ok" blood results? I wouldn't trust them, you need to take charge of your own health, and insist on getting copies of ALL your blood tests.

  • I've only ever seen locums. One told me to 'shut-up and let her finish'...you see I am a bit hard of hearing, I didn't hear what she said and asked her to repeat it. You see her first language was not English (which is mine).

    Thanks for your advice. I really appreciate your help and all the other people too. xx

  • Dear Bluebellgirl, I too am hard of hearing and if anybody, let alone a G.P./Locum told me to "shut up". I would have told her to "shut-up" walked out and INSISTED on seeing somebody else, and complaining. What she did was just unacceptable, and you should not accept it. Wish I was there with you Bluebellgirl, I would have told her her fortune. Actually just as well I wasn't I might be locked up by now!!

    Take charge of your health, read what you can, join the forums on here, I learnt so much. I was very ill, doing what the doctors/experts/consultants told me and got iller and iller. I am only better because I took charge, read what I could seeked out the people that could help me.

    Don't give up, the information is out there. x

  • Dear Margo. Loved your reply. I think I was so shocked by the locum telling me to shut-up I did. I hadn't a clue what she was waffling about. I think she thought she was God. I have gained strength from this forum and my experience of dealing with unhelpful health professionals. Thanks so much to you and everyone xx

  • you sound like your doing the best you can another thing is drink plenty also as the egfr does down your creatine raises you can stay like that for many years & these levels tend to go up & down a little anyway even when like my hubby your on dialysis!

    his creatines normally in the 600 mark but because he's had infection they are nearly 900! good control of blood pressure is also important as high bp damages the kidneys

  • Thank you for your reply. I really appreciate it. I think I may have to drink more as I am rarely thirsty and don't ever drink hot drinks just juice and squashes. Wish hubby all the best. xx

  • Plain water is probably best if you can manage it to increase your fluids

    & thank you it is more difficult to fight infections when your function is gone but he's getting there!

  • Thank you for this. Hope all goes well for hubby. xx

  • Yes plain water Bluebellgirl.

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