Taking the Pee

For the past decade whenever I have blood tests and my kidney function is checked it is found to be abnormal.  Adults of my age should have a GFR of >90 and mine is consistently in the 70s – I am therefore classed as having stage II chronic kidney disease.  Despite that, my GP never mentions the abnormal result.  When I’ve picked her up on that she just says “oh, it doesn’t mean anything – you were probably dehydrated the day you had the test done”.  What, every time?!

As I said in a recent post, I’ve just had an email off a friend who has ME and strongly suspected MCAD and hEDs.  She’s just had her kidney results back and they are also abnormal.

Someone on the ME Association’s Facebook page recently asked a question about peeing.  She said she wees for England and is that normal in ME?  Well, from my experience “yes”!  I pee constantly, sometimes going 3 times in an hour, and I don’t mean I do a little trickle – I mean I PEE.  Like a race horse.  I have no idea where all the fluid comes from.  My concern is that I have piddled so much in the last 20 years I am literally exhausting my kidneys and one of these days they will lie down with their tongue hanging out and die like an overworked donkey.

Before going on a low histamine diet my peeing was out of control.  I often got up 6 times in the night to urinate and during the day was never off the loo.  There was/is no pain involved, I just peed and peed and peed.  After going low histamine, however, this improved substantially and now I only wee in the night if my histamine bucket is high.  But I do still wee much more than your average human.

When you have hEDS you can definitely get urine retention and it’s easy not to empty an overly-stretchy bladder properly, but that still doesn’t explain the sheer volume of widdle.

These days, if we have a symptom like this we would expect to go on Google and find out the cause, only of course no-one looks at this stuff when it comes to ME (they’re too busy concentrating on ‘fatigue’) and research into MCAD and hEDS is still so scarce that nothing much pops up.  It’s definitely something I’ll discuss with the MCAD doctor if/when I get to see him.

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4 thoughts on “Taking the Pee

  1. init72

    YES!!! Mine has been exactly the same at every blood test too either 70 or 75 and when pointed out by a trainee GP to my GP she stated “oh no as long as it’s not below 60 we don’t have to worry” and even though he RIGHTLY pointed out my past THREE tests were also low and I should be referred she dismissed him!! I also pee non-stop and can’t walk far without needing a loo either at some stage (although not incontinenant) but not had any tests taken in nearly two years now so will have to wait and see – I drink almost 2 litres of water a day and also take electrolyte tablets in a few glasses to see if this helps (it has) – interesting post!

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  2. Jak Post author

    The thread on the MEA Facebook post had loads of comments from people who pee excessively. It would be so interesting to know if any of them had abnormal GFR tests. This is the thing which bugs me about ME research – we have all these symptoms in common yet they’re never looked at. The emphasis on nothing but fatigue does my head in :-/

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  3. Living With Frozen Shoulder

    Hi Jak, from what I’ve been learning lately if you are not peeing normally (which it sounds like you’re not if you’re peeing too often and too much volume) then you could ask your GP to send you to a urologist. There are investigations they (and you) can do (like bladder diaries and urine testing amongst others) to try to get to the bottom of the problem and it may not be related to your ME or other known conditions – and it’s worth investigating because like you say – your kidneys are tired. We need to be so resourceful and so persistent to actually obtain appropriate and timely assessments, investigations and treatments these days! Good luck! 🙂

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    1. Jak Post author

      Thanks for your concern. I suppose I’ve put up with it for nearly 2 decades so it’s just something I live with, but I agree it’s not normal and really does need looking at. I thought I’d do my own diary of input and output, just to see if I really do pee more than I drink – I know that’s something a hospital would suggest and it would be useful to have that info if I do ask for a referral. Jak x

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