Worried about CKD

Hello, I'm 33 years old and over the past 3 months but eGFR has fallen from 59 to 47.

My dad has the hereditary type of PKD but I had a scan aged 25 at which time they said I showed no signs of having the disease.

Naturally now very worried and having a scan next week to find out what's going on as this decrease appears very rapid.

My creatinine is 115 and urea 7.5, no real idea what this means.

I have had anaemia since I was about 20 which is never higher than 10.

I went to GP as feeling ridiculously tired all the time and this drop in kidney function was picked up, gradually feel worse also dizzy, nauseous, cold and itchy often.

Is this similar to anyone else's experiences? Can't help but fear the worst is going to happen 😔

9 Replies

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  • Yes these are all symptoms my hubby had for many years in the early stages, your anaemia needs sorting no wonder you feel tired! The experts try to say you don't get any symptoms until the later stages but thats not so in our experience! urea is the level of urea in the blood thats not passed out through the kidneys so as the fail it gets a lot higher & creatine is also a bit of a marker for them of the toxins in your blood hopefuly they will find out why this is happening for you but also egfr can vary day to day especially early on if you've been ill even just a cold! try not to worry eat healthily , exercise keep a healthy weight & drink plenty that will give you the best chance of all! in other words look after yourself good luck

  • Hi Laura

    I am 58 and have ADPKD which is the same as your Dad. I was diagnosed at about 25.

    I found I had no symptoms until my eGFR fell below 45. I always feel cold, never had a problem with itching. Restless legs and feet burning and pain in my sides are what bother me the most.

    But all the symptoms you describe fit very well with your anaemia, this needs investigating properly and sorting out!

    Do you take any anti inflammatory medications? Stuff like ibuprofen, nurofen, as these can badly effect the kidneys.

    Just wait for the scan before you start thinking of the future. I know it is hard waiting but your eGFR is not too bad, it can be effected by a lot of things, make sure you are well hydrated before your next blood test.

    Keep us informed and we will be here to support you

    Best wishes Christine

  • Thanks for your replies Phillen and Christine.

    Had ultrasound today, and confirmed that I do not have PKD so that's a relief for all especially for my dad. They wouldn't tell me anything other than that and said full report would be sent to GP, they did spend a lot of time looking at the blood flow patterns.

    Have an appointment with nephrology in 3 weeks time.

    Unfortunately a breast biopsy on Friday now, it never rains but it pours!

    Lx

  • First Nephrology appointment today and consultant still hasn't received my full ultrasound report, helpful, not! So awaiting that, more bloods in meantime and in next month will have some sort of nuclear scan test before returning back to see him in two months time. Talk of kidney biopsy as another test but could all turn out to be CKD, just in limbo, waiting....

  • Hi Laura-J

    It was such a shame the results of the scan were not available, very frustrating for you. Have you had the breast biopsy results yet?

    You sound like you are in good hands with the renal team, they are certainly not skimping on the tests. The waiting is the worst thing but on the positive side you now know you do not have PKD.

    Just stay positive!

    Best wishes Christine x

  • Yes Christine, thankfully the breast lump was benign, so that was a relief.

    Just hoping they find something "fixable" with my kidneys as think a diagnosis of CKD would be very frustrating.

    Laura x

  • Letter from consultant to my GP, which states diagnosis of CKD Stage 3.

    Nothing abnormal in standard ultra sound and having nuclear renal scan in a few weeks time.

    Consultant pushing for more to be tried regarding my constant anaemia, so that's a bonus.

    See him again in November.

    Feeling slightly better, but think that's my body just adjusting, drinking more and not working so hard these days!

  • Hi Laura. Welcome. I just received my official diagnosis of CKD a few days ago. I can identify your frequently feeling cold. The first time I experienced unexplained periods of feeling chilled was last October, after my husband died. My (now previous) cardiologist said that chills without fever had no medical significance. He was wrong. I attributed the chills and poor appetite to grief. I'm 84 years old, was a young adult in the 1950's when doctor often brushed of a patient's symptoms, saying they were psychosomatic. Not so.

    I had my first meeting with a kidney doctor, and am please with the information she communicated and the fact that she ordered tests. I will report my statics when I received test results and understand their significance. I'm worried about having CKD too, even though I've had a good life.

  • So just had my follow up with consultant today.

    Nuclear scan showed scarring on my right kidney which he believes may be the cause of my decreased kidney function.

    Have stabilised at 50% now which is good.

    Even better that the CKD clinic are taking over the management of my anaemia as still no improvement after liquid supplements, so injections or IV to be arranged.

    Actually looking forward to that, will surely be a massive boost to my body.

    Asked about EPO as my dad had those and they made him feel amazing but told not considered until under 30%,

    Time to get healthier, although I'm not bad anyway.

    Invested in the book "Eating well for kidney health", so perhaps my home cooking may improve ;)

    Hopefully remain steady at Stage 3 for many years to come x

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