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Author Topic: Following my previous 'inaccurate' record of kidney disease  (Read 9594 times)

dahliagirl

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #15 on: November 25, 2016, 12:53:29 PM »

I doubt they would be concerned if it was over 60.  If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis.  You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.

The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important.  Now I have seen the list of tests (and they are all in a very mixed up order  >:( ) it is mind-boggling!!  Being able to see the tests is a mixed blessing because you need a bit of help interpreting them.  I am glad I can see them though.

Being able to see  your notes seems to vary from surgery to surgery.  I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments.  When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened.  I figured that if everyone else had access, then it was about time I did too  :)  They don't seem to have done this for existing patients though.
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #16 on: November 25, 2016, 03:18:04 PM »

I doubt they would be concerned if it was over 60.  If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis.  You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.

The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important.  Now I have seen the list of tests (and they are all in a very mixed up order  >:( ) it is mind-boggling!!  Being able to see the tests is a mixed blessing because you need a bit of help interpreting them.  I am glad I can see them though.

Being able to see  your notes seems to vary from surgery to surgery.  I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments.  When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened.  I figured that if everyone else had access, then it was about time I did too  :)  They don't seem to have done this for existing patients though.
My referral is only for haematuria. It was recommended by a urology dept. at a different hospital to the one which has the 'fictional' test result for me. The GP looked surprised when I told her that they had recommended a nephrology referral. As far as I know, I haven't had all the tests which you list above.
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CLKD

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #17 on: November 25, 2016, 03:33:46 PM »

How many people ask what the blood tests are actually for?  When I was a Med Secretary in 9 years not 1 patient queried what they were being sent for  ::)
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Annie0710

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #18 on: November 25, 2016, 03:36:17 PM »

Well for instance when this latest kidney test was done I was only aware of the test being done for ovarian cancer, sometimes they add in full blood count for instance without saying to get a bigger picture

I usually know what the blood test is for but not any they haven't mentioned


X
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #19 on: November 25, 2016, 04:38:15 PM »

How many   I always ask what mine are for.
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dahliagirl

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #20 on: November 25, 2016, 04:45:07 PM »


Same  here.  I sort of thought I had been told ie full bloods and rheumatoid factor -and had two slips -  so never thought to ask if there were any more.........
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #21 on: December 03, 2016, 09:19:13 PM »

I doubt they would be concerned if it was over 60.  If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis.  You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.

The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important.  Now I have seen the list of tests (and they are all in a very mixed up order  >:( ) it is mind-boggling!!  Being able to see the tests is a mixed blessing because you need a bit of help interpreting them.  I am glad I can see them though.

Being able to see  your notes seems to vary from surgery to surgery.  I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments.  When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened.  I figured that if everyone else had access, then it was about time I did too  :)  They don't seem to have done this for existing patients though.

Here is an update on this. I am still worrying about it but don't know whether i am overreacting or not. I am angry about lack of info/inaccurate info  given to me.  I saw the GP on Friday. At first her comments were reassuring. She looked at my recent blood test which included kidney function and gave me 2 figures. One was 90 and the other 71. She implied that they were normal. Only after leaving did i realise that she hadn't said which was which. Maybe the 90 was creatinine and the 71 was eGFR.  Her next statement then threw me. She said that the Homerton hospital might not agree to remove chronic kidney disease from their records even though my GP practice doesn't have it on their records. Something to do with coding used in blood tests. She didn't explain it well and i had run out of appointment time to challenge it.

I suspect i will have to wait and ask the nephrologist in January. She is only supposed to be seeing me due to the blood traces in my urine which I had after UTI infections in September. It is a different hospital.
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dahliagirl

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #22 on: December 06, 2016, 11:20:33 AM »

This does sound very frustrating  ::)

If it is any help, when my eGFR was 72, my creatine result was: Serum creatinine level 74 umol/L [45 - 84]

So if your eGFR is 90 and creatine 71, that is an excellent result, but the otherway round it is a bit off target but not by any huge amount.  I hope the nephrologist is more helpful.

In my experience, it is best to see consultants with a short but clearly written list of anything you want to know or don't understand as the zoom off into their own universe and leave you behind.  ;)
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #23 on: December 06, 2016, 07:23:27 PM »

This does sound very frustrating  ::)

If it is any help, when my eGFR was 72, my creatine result was: Serum creatinine level 74 umol/L [45 - 84]

So if your eGFR is 90 and creatine 71, that is an excellent result, but the otherway round it is a bit off target but not by any huge amount.  I hope the nephrologist is more helpful.

In my experience, it is best to see consultants with a short but clearly written list of anything you want to know or don't understand as the zoom off into their own universe and leave you behind.  ;)

Hi Dahliagirl   I had no idea that it was on my record until I had the endoscopy a few weeks ago. Today I emailed the nurse who gave me the endoscopy result and she said that it would have come either from my GP or possibly in error  from the ENT dept in 2015. She has removed it from my online record for now but doesn't have access at present to my printed records.  I will make a note of questions before I see the doctor in January.  If a doctor had diagnosed kidney disease and not told me, I would be pretty annoyed.
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #24 on: December 13, 2016, 11:26:13 AM »

I doubt they would be concerned if it was over 60.  If they are referring you for lower eGFR and haematuria, that seems in line with NICE as the tests alone are not a diagnosis.  You seem to need symptoms and Someone Who Knows as well to work out if there is any actual failure going on.

The eGFR comes with a whole host of other tests - creatine, albumin, electrolytes etc etc and if these are all ok then the actual number of eGFR is less important.  Now I have seen the list of tests (and they are all in a very mixed up order  >:( ) it is mind-boggling!!  Being able to see the tests is a mixed blessing because you need a bit of help interpreting them.  I am glad I can see them though.

Being able to see  your notes seems to vary from surgery to surgery.  I couldn't in my old one, even though they were ahead of the game with online prescriptions and appointments.  When I registered with the new surgery, there was a box to tick about notes, and I ticked it and this is what happened.  I figured that if everyone else had access, then it was about time I did too  :)  They don't seem to have done this for existing patients though.
Hi Dahliagirl  Here is an update. I went back to the GP today for clarification but saw a different GP. She assures me that I don't have to worry but accepted that I was angry about not having been told about this and the way in which the hospital included it in their reports without me knowing. She explained that blood tests for kidney function give an official result of CKD stage 2 for virtually everyone over about 50 because it is very rare for them to have a GFR  over 90. They have records of GFR for me since 2011 and they have varied enormously. Based on the tests so far, I don't have to worry because my creatinine, urea etc. are normal.

She gave me a printout which said
eGFR (now 61 but it has fluctuated a lot between 60 and 90 - never below)
Serum Creatinine 91 umol/L [62-106]
Potassium and urea also within normal levels

I now have to wait and see the nephrologist in January. I am hoping that the blood traces in urine are more menopause related than kidney. I got into a bit of a panic last night and found myself staring at my ankles/feet and asking myself whether they looked swollen!!

Have you found that drinking more water reduces your eGFR?
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dahliagirl

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #25 on: December 13, 2016, 04:38:22 PM »

That sounds a more helpful doctor.  From reading, it would appear you can have good results and still have failure (your kidneys work hard to make up the shortfall) and vice versa.

It would appear that I have had CKD stage 2 since I was 43  ;D  I think that is ok if your urine test is unrelated.  My husband has always had protein in his urine and once blood - he ended up having two sets of x-rays done with a dye (not sure if they do this any more) and they could not find anything.  We have recently found he does have a congenital heart defect though - which he should not have got out of childhood with  ???  but he is in fine health.

I drink enough water to keep my urine pale (straw coloured) during the day.  The original tests were when I had a kidney stone (to check for damage), and doing this is the one proven way to reduce the chance of recurrence of stones.  I have no idea if it affects test results, but there is no way I want another kidney stone - once in a lifetime is plenty  >:( so I will continue to do it.

Good luck with the nephrologist.
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #26 on: December 13, 2016, 07:42:00 PM »

That sounds a more helpful doctor.  From reading, it would appear you can have good results and still have failure (your kidneys work hard to make up the shortfall) and vice versa.

It would appear that I have had CKD stage 2 since I was 43  ;D  I think that is ok if your urine test is unrelated.  My husband has always had protein in his urine and once blood - he ended up having two sets of x-rays done with a dye (not sure if they do this any more) and they could not find anything.  We have recently found he does have a congenital heart defect though - which he should not have got out of childhood with  ???  but he is in fine health.

I drink enough water to keep my urine pale (straw coloured) during the day.  The original tests were when I had a kidney stone (to check for damage), and doing this is the one proven way to reduce the chance of recurrence of stones.  I have no idea if it affects test results, but there is no way I want another kidney stone - once in a lifetime is plenty  >:( so I will continue to do it.

Good luck with the nephrologist.
  I asked the GP whether I would have to declare this for travel insurance. Based on what they  know so far, she said no it wasn't necessary. My eGFR is less significant because all my other tests are normal. My practice has no diagnosis of CKR on their records for me. I do wonder how many GP's do these tests on their patients and don't tell them. I was told that virtually everyone over 50 has CKD2. In your reference above to 'On reading' what are you referring to? A particular website or article?
I will wait until my January appt./further tests before actually booking anything. I have definite questions to ask the consultant nephrologist regarding the way that  test results are included on patient records.
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dahliagirl

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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #28 on: December 14, 2016, 05:30:50 PM »

https://www.kidneyresearchuk.org/health-information/chronic-kidney-disease
http://www.edren.org/pages/edreninfo/blood-tests-in-kidney-disease.php#GFR

I have looked at all the sites that I consider sensible - these are ok.
Thanks. I have already looked at the first one but not the 2nd. I have sent the first one a question  today about criteria for diagnosis. Other than that I will have to wait for my haematuria appt.in January.
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Katejo

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Re: Following my previous 'inaccurate' record of kidney disease
« Reply #29 on: January 09, 2017, 06:11:15 PM »

https://www.kidneyresearchuk.org/health-information/chronic-kidney-disease
http://www.edren.org/pages/edreninfo/blood-tests-in-kidney-disease.php#GFR

I have looked at all the sites that I consider sensible - these are ok.
Thanks. I have already looked at the first one but not the 2nd. I have sent the first one a question  today about criteria for diagnosis. Other than that I will have to wait for my haematuria appt.in January.

Positive update at last! I don't have chronic kidney disease. My eGFR is fluctuating between 60 and 90 (last reading shown to me was 73) and the other factors are normal. I had a couple more blood tests done today as a precaution to do with the traces of blood in the urine but she thinks she knows the reason behind it and that it's nothing serious. She appeared to fully understand why I was so unhappy about CKD being entered on my records as a 'diagnosis' by another hospital without further checks/referral to a renal specialist.
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