Have you ever doubted your test results? - Kidney Disease

Kidney Disease

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Have you ever doubted your test results?

meggiemog profile image

I am based in the UK - and have been feeling a bit rundown for quite some time - and it turns out my kidney function went from a GFR 80 down to 65, then 67 - then a blood test most recently with GP a GFR over 90 - and my creatinine was 64. I thought - my GFR has never been over 88 - never mind 90 and I still feel really awful. I called my GP who said - well your kidneys are fine now..... which I really wasn't so sure, so I paid to have a private health & lifestyle blood test, which included creatinine, GFR and albumin protein as a part of it. Their labs are a little different to NHS values - but the creatinine was 100 (range 45 - 84) GFR 50.51 (range >60) and albumin 33.5 (range 35-50). Also showed my cholesterol overall was OK - but I was low in 'good' HDL cholesterol. They recommended I saw my GP - which I have done, and am getting re-tested (again) - but has anyone else had to do this?

15 Replies

To be able to make a diagnosis a nephrologist, or a knowledgeable PCP would run the tests several times over a period of two or three months. Once the diagnosis has been made and a test seems not to fit the "normal" for that person, based on their history, another test should be run again in a very short period of time. I've had a test run where the numbers were so far over the reference range that I asked what could be reason for that. The PCP told me she had no idea. When I asked for the tests to be redone, she told me she couldn't/wouldn't do that. This story has a happy ending. I contacted my nephrologist and explained the issue. They had me come in the next day and retested. I made no changes to my activities or my meal plan between the two test dates. My labs came back two days later all within the normal range. The next day I had a new PCP.

Just in case no one has told you, the GFR is not a stable number. It's just a snapshot of the time you took the test and can fluctuate. Wide swings are cause for concern and should be re-tested.

I hope this helps.

meggiemog profile image
meggiemog in reply to Mr_Kidney

Thanks Mr Kidney, you are helpful as always! Hopefully the next results will be a bit more helpful. Unfortunately in the UK you only see a nephrologist When you are almost at the point of needing dialysis! However I might access private healthcare I get through work to get to a diagnosis. No messing around as kidneys are too important!!!

Mr_Kidney profile image
Mr_Kidney in reply to meggiemog

Best of luck. It sounds like you have the right attitude. Keep us informed.

Hi, I am between 2 hospitals but my labs vary lots between the two. One hospital my eGFR has been fairly stable between 33-38 for the past couple of years

Hosp 2: my eGFR has been generally higher but has just dipped 18 in a year...from 56 to 38???

I don’t know which one is the most reliable source!!

Both hospitals I’ve been under for years so they both have a trend.

meggiemog profile image
meggiemog in reply to madonbrew

Hi madonbrew!I think my worry / upset was being told that I was alright now- when I really wasn't! Sadly been misdiagnosed twice in my life - so I suppose makes me question when I feel the results don't fit. I know there are different ranges for each lab - but the results I got back from the private lab were enough to warrant another test (thankfully). Not sure I would have been taken seriously any other way!

there are two types of assays that UK labs use - one a cheaper colorimetric type and an enzymatic type. The latter is more reliable whilst the former can be subject to interference - this may explain variation between results but as Mr Kidney says there are also numerous other factors that influence results e.g. hydration and protein intake. If your not feeling right I would tend to look elsewhere for other reasons first e.g. active b12 status and vit D among a set of full blood results - unfortunately though you won't get a GP in the UK to test active b12 - has to be private....

SkiingSailor profile image
SkiingSailor in reply to jox1

That’s very useful, thank you .

meggiemog profile image
meggiemog in reply to jox1

Hi Jox1The test included vitamin D and B12. Both ok. The only other thing that was flagged was high ferritin my level was 152 - and the cut off point for that is 150. I was fasted for the test. No heavy protein or vigorous exercise 48 hours before and also was as hydrated as I can be. I wanted a test noone could argue with!

jox1 profile image
jox1 in reply to meggiemog

So your private test was for active b12 - just that's quite a specialised test and needs special handling. If so then you could consider raising the level - some feel better when it's higher in range. The other thing to consider is folate as a cofactor. But If it was a standard b12 test then read up on the differences - sorry perhaps you already know what they are! And if course failure to absorb b12 can cause nerve damage so very important to be absolutely sure about it. Re vit D - also needs co factors such as magnesium so if this is low chances are it won't be absorbed correctly - but wil l still show in your bloods as being ok. A rise in creatinine in itself is probably not the reason why you are feeling off - there will be something else going on....

meggiemog profile image
meggiemog in reply to jox1

I have had lots of tests - from diabetes to thyroid to sjogren's. I have real problems with hydration, and often feel like my tongue is on fire. I lose my taste for days on end - well before covid - and have random food intolerance- which I can't actually pinpoint. Sometimes when I can't taste the food I am eating ( chicken is one of them) I will end up feeling and being quite sick. On top of this I am always cold - and have little energy. The kidneys seem to be the only things that are giving the doctors any clues!!!

The trouble with a lot of non-specific symptoms is that GPs will be mystified and won't know what to do. I can say though that all those symptoms may have roots in autoimmunity and digestion and thyroid and -are not connected to kidney function. All I can suggest is that you start to work through things logically - I've found with chronic multisystem conditions that GPs just end up running around in circles for years and nothing gets better. A good resource you might use is a Facebook group - support for Dr myhill's protocol- it's really aimed at chronic fatigue sufferers but covers all the bases of diet inflammation autoimmunity and thyroid and as fatigue seems to be part of your problems it could be a good resource for you to take control of your own health - there's also a huge searchable history that you can look at first once your in the closed group.....

Thanks! There's a few people who are close to me including myself who suspect autoimmune problems- but obviously not one of the 'usual' suspects. GPs just run the same standard tests as they can only do - so maybe I need to find someone who can think outside the box!

I am not too impressed with how my dad is being monitored and on more than one occassion I have had to ask the GP to take his blood ahead of his renal phone consultation (they are supposed to do this anyway) which he has alot more of than any physical clinic appointment, even though he is now at just 18% function. Even when he was in hospital last year no doctor (if i was lucky enough to even speak to one) explained anything about ckd or what the different blood values mean. I only know about his overall function and potassium levels because he has been admitted for that being too high in the past.

That's not good Nicolette2020 . I know a lot of time and effort is taken up by covid the moment and to be honest I thought my results were more likely due to a very tired lab tech than anything malicious, but in a situation like your Dad's- they should still take the time to explain things to him. You need to speak up if you think more should be done. No one likes hassle - but sometimes you have to have words before you get something done.

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