Renal failure

[Wraysbury]

Just been told as a good bye comment from GP “oh ur blood results show u have renal failure”. HAVE I I replied. Last time her parting comment was oh “you’ve probably got fibro too” do they think before they open their stupid mouths. How do I leave with that knowledge

[Rimmy]

Goodness - with no advice or support about WHAT TO DO !!! about all this ... and as you were leaving .... !!??

[piglette]

With renal failure you would normally need dialysis, it does not sound as if that is what your GP meant as she would not have been so flippant. I discovered that I had been diagnosed with chronic kidney disease stage 3 in 2015 recently when I started to use the on line system at my surgery, nobody had mentioned it to me though.

[Hindags in reply to piglette]

I was told stage2 by a GP but kidney specialist said just age related decline. All based on GFR test. But that was long ago and for the last ten years the tests have been normal, PMR and Pred included. Go figure.

[piglette in reply to Hindags]

My GFR tests are still in the red so they are probably correct in my case, it would just have been nice if they had told me!

[PMRpro Ambassador in reply to piglette]

Probably whoever is in charge realises it isn't much to worry about!

[Hindags in reply to piglette]

I had the same reaction. Why wasn’t I told at stage one? What does stage two even mean? What can be done if anything? So many medications have warnings about kidney function. How do I interpret those warnings now? I was so annoyed I reacted quite undiplomatically with my GP. I told her that the veterinarians I have taken my dogs to would have communicated better about something like this. Not fair to her. She was really quite good. She told me she was hurt. I apologized. She referred me to a nephrologist. The relationship was repaired. I miss her now she has moved.

My cousin’s husband was told he had stage three kidney disease, also out of the blue, though his numbers were off for quite a while. He went to Mayo Clinic. Not sure how much more he learned.

I will pick his brains and report back here if anything seems pertinent.

[piglette in reply to Hindags]

I would love to hear about your cousin’s husband, as I have not heard anything from my surgery. I have rather given up with them anyway.

[Hindags in reply to piglette]

My cousin told me about the visit to Mayo. It was a team effort, it nothing new by way of treatment came out of it. He is doing fine, and his numbers have gotten a bit better.

[Angiejnz]

Time to find a new gp methinks

[Hollyseden]

Going to your doctor sounds a nightmare. You must leave feeling even worse than when you arrived. Maybe try to see a different doctor for a fuller explanation.

[Chrob]

I think I would have to go back and see someone else .

[SnazzyD]

Yet another gem. Sounds almost malicious because who wouldn’t feel very upset with that unsubstantiated bombshell to go home with. First find a different GP, then go to the new one and ask what it means. There are different levels of renal failure going from, acceptable age related decline to the level needing dialysis. There is a whole country in between.

[Wraysbury]

Thanks. I’m 61 so don’t think it’s age related. I’m seeing a different GP this week She did say it’ll need investigation, but I was dashing off to the ophthalmologist to have the ? GCA checked at the time so I didn’t bother to go back in and sit and ask for an explanation. I do feel she could have saved that little nugget til our next appt tho! Anyway I feel more positive today, so I’ll go armed with my list of questions and not leave til I’m satisfied!!

[PMRpro Ambassador in reply to Wraysbury]

Oh yes - by 60-70 years old our GFR is about half of what it was at 20.

[piglette in reply to PMRpro]

On the other hand as a doctor you would say you have kidney problems possibly age related not say renal failure. I would immediately think dialysis if my GP said that to me, then have a heart attack!

[PMRpro Ambassador in reply to piglette]

Exactly - renal FAILURE is a defined condition and far far worse than CKD 3

[DorsetLady PMRGCAuk volunteer]

I think what she probably meant was you are showing signs of CKD as piglette and Hindags have mentioned.

When I was still on high doses of Pred (45mg) my results came back as high, they were monitored for a few months, and I was sent for a kidney scan which showed no problem. No problem on lower doses, nor now.

I think the Pred may skew the kidney blood test, plus as others have said it can be age related - I was 66.

[Wraysbury in reply to DorsetLady]

Thanks. That makes sense.

[Omanain]

This is appalling! Is it possible for you to see another GP. One with at least some understanding of 'bedside manner'

[SheffieldJane]

This doctor needs to be held to account for this remark and be required to explain what she meant. Perhaps writing to the practice manager would be a start?

[Gaijin]

I have had a similar comment from my endo.. his parting words were, "you have hyperparathyroidism".

That was 8 months ago, I don't see him till end of November.

Can you go back to the GP and tell him to give you a referral to a urologist? Kidney failure! That's mal practice IMO... to tell you that and nothing else! What are these docs thinking!?!?

Hope you get help soon.

[Wraysbury in reply to Gaijin]

😟. Yes. I’m going back next wk

[PMRpro Ambassador]

Ahhhh - that answers the question I just asks you on the other thread. And it MIGHT be the reason you feel so tired: NOT because you have renal failure but because you are sunconsciously very worried about what your VERY stupid GP is saying to you. And she needs to have an official complaint made about her because she obviously has a serious problem relating to and communicating with patients and, as such, has no business being a GP or any other sort of doctor except a pathologist - then at least she wouldn't have to communicate with anyone except the police...

Some years ago a study was done to see if it was possible to predict patients with renal problems on the basis of the routine blood tests most patients have done at various times. They used the results to calculate a figure they called the eGFR: the GFR is the glomerular filtration rate, the amount of urine that is cleared of a particular substance in the blood in a given time. When you need an accurate answer they take a 24 hour collection of urine and during that 24 hours they take a blood sample and measure the creatinine in it - and work out the GFR. But they decided that if they assumed some basics they could work it out without the 24 hour urine collection (they are easy to do but a faff and patients always forget the most important urine volume, the very first in the morning!!!).

All sorts of things can affect the eGFR - if you had steak for dinner and bacon and eggs for breakfast that is a lot of protein - and the blood creatinine level goes up. If you went for an early morning fasting blood test or had to go out and get to the hospital for the blood sample to be taken so were worried about finding a loo you might have drunk much less than usual and be a bit dehydrated. Those factors have an effect on the figure they calculate and it might well turn out lower than it should be, There are other things too. And it falls naturally with age as well. If you have a low result - it should be repeated a few weeks later and not until you have had 3 low results in a row done monthly should ANYONE start to worry if you have no other symptoms.

The expert renal doctors were horrified it was to be included on the test results for GPs to dish out - as this GP seems to have done - without background knowledge but the gubmint, in its infinite wisdom, gave the go ahead. There have been many patients left in a similar situation, terrified they have renal failure when really all the number says is "CKD Stage 3) - which is almost normal for an older patient anyway.

"Levels below 60 mL/min/1.73 m2 for 3 or more months are a sign of chronic kidney disease. A GFR lower than 15 mL/min/1.73 m2 is a sign of kidney failure and requires immediate medical attention."

So a patient may have a reading of 61 and be told nothing or that all is well, or a reading of 59 and told they have CKD Stage 3. Which is obviously rubbish.

There is a lovely picture to explain it here:

kidney.org/atoz/content/gfr

and from that you can see that kidney failure is a VERY long way down the list and you would be a really rather unwell person. If the silly woman MEANT kidney failure she shouldn't have been allowing you out of the door, she should have been dialling 999 for you to be transported to hospital.

I can't remember how old you are - but all of us here probably qualify as CKD Stage 2 and a lot could be CKD Stage 3a without there being anything to worry about. Some medications also affect the reading and I believe one is omeprazole or other antacids (not sure and can't find lists). Using NSAIDs like ibuprofen certainly does.

Another article says " For example, a healthy 60-70 year-old will have a GFR of 60-70 mls/min (half their young adult normal)." - a lower figure than in the image I gave the link for above.

But I am utterly disgusted at your GP - I wonder what she would have come out with at your third visit? Which I hope there will never be...

[DianeA1 in reply to PMRpro]

Hi PMRpro, Do they tell us how to best prepare for having an eGFR test, like what should or shouldn't one eat or drink beforehand, and when would the best time for a urine sample to be taken? I have been told to fast for blood tests, but not to restrict certain foods the day prior. Thank you, Diane

[PMRpro Ambassador in reply to DianeA1]

I don't think so - our local hospital here has a sign up saying that ALL blood tests should basically be done fasting, they are only open 7-10am. There are lots of tests it doesn't matter with and I have a bad habit of not wishing to miss my morning cups of tea...

One of the articles I looked up for the above essay does say that creatinine should be done fasting - but that doesn't relate to the breakdown of the t-bone steak you had yesterday and the effect of that can last a long time in the blood. Urine samples tend to be best taken as the first one in the morning - like it was for pregnancy! That sample probably has the highest levels of anything they want to test for and a one-off urine is never used for absolute quantities, even if you are checking for sugar, it will just be none/some/lots/lots and lots.

[DianeA1 in reply to PMRpro]

Thank you!!

[PMRCanada in reply to PMRpro]

Yet another detailed, helpful explanation PMRpro! One clarification please.....what is a gubmint?? (for those of us outside of the UK) I’m thinking it’s not a positive term given how you have used it in a sentence

[PMRpro Ambassador in reply to PMRCanada]

A slightly perjorative reference to the government... Stops me being more political...

[Purplecrow in reply to PMRpro]

OMG!!! now That's FUNNY!!

Ok if I borrow it?

[PMRpro Ambassador in reply to Purplecrow]

Of course...

[Gaijin in reply to PMRpro]

How clever!

[PMRCanada in reply to PMRpro]

Too funny!!

[Wraysbury in reply to PMRpro]

Thanks for this detailed reply

[piglette in reply to PMRpro]

I think I may have found out why my GP has noted CKD in my case, they get QOFs for it, well they did at that time, they may still now, I know kidneys is something QOFs seem to find important. Looking at my on-line medical record when they did this diagnosis I had not had any blood tests and I had not visited the surgery. The person who entered it was not a doctor but I think a receptionist, I had never heard of her. It looks like they had got the receptionist to go through test results and mark up as CKD so they got QOF points, what do points mean? Prizes.

[PMRpro Ambassador in reply to piglette]

If that is so - that is utterly disgusting and needs to be reported. How did they get a CKD dx without any blood tests?

[piglette in reply to PMRpro]

I had had one a couple of weeks earlier so I suppose you could argue I had had a test around the same time. Perhaps the results arrived back then as it was around Christmas/New Year.

[PMRpro Ambassador in reply to piglette]

Yes - that would cover it. But it would be polite to share such results with the patient they referred to...

[piglette in reply to PMRpro]

As I said I reckon they were just picking up everyone so they could get their qof points.

[Wraysbury in reply to piglette]

Yes that crossed my mind! 😡

[piglette in reply to Wraysbury]

But CKD Stage 3 is slightly different to renal failure. I would be a jibbering heap if my GP had said that to me.

[Wraysbury]

I just felt like I slipped into another life that seriously could not be mine!! I feel better after Uve all responded. Thanks +++And positive to sort it out next wk. 💪

[Hidden]

Hi Wraysbury. Your earlier post about GP comment re renal failure has troubled me all day. I had no idea how to respond. PMR is one thing, but renal failure is a whole new and very different scenario.

I'm pleased to see that a series of posts by those who know far more than I do have put the comment into context. I hope they've provided some reassurance. Frankly, the comment you reported by GP is totally unacceptable. At any level. That's not a throwaway comment, it's life changing. How were you expected to cope with that diagnosis, assuming it was correct?

We're possibly of a generation which respects professionals, rather than reveres their every word. But they too have responsibility. To throw in a remark like that to any patient, let alone one already subject to serious difficulty in managing a challenging condition, is not on. It's wrong to put the onus on you to question the comment, but, if nothing else, you could consider raising a formal concern with the practice manager. I hope things improve for you. If it's any consolation, I'm finding the fatigue side of this odious condition even more difficult than pain and limited mobility. Three months in and it's not better; different but I'm struggling to function at even a basic level day to day because of overwhelming fatigue. I'm just hoping it'll get better...preferably soon.

[Wraysbury in reply to Hidden]

Thanks. I agree as my pain is totally manageable. I’m the sort of person who expects to be able to fix myself or get fixed and return to normal and this fatigue is dreadful I’ve read how some people on pred had new found energy at the beginning, but that has never happened to me. I’m 3 months since diagnosis and still wake hoping to be back to normal. However some of The positives ( and I’m finding more or at least trying too!) are that at least it does burn out eventually and It’s not going to kill us, this group who get and understand even the most muddled or trivial question, fear, rant and winge!! And discovering/ rediscovering sedentary hobbies and pass times. Good luck

[Hidden in reply to Wraysbury]

I've had to revisit every expectation. That's proved to be very difficult when used to being in charge of health and lifestyle. Very active, relatively fit...you know the story. But PMR turns everything on its head. I have to listen to everything I've arrogantly ignored. Tiredness, lack of concentration, pain, mobility restriction. It's not easy and I've still a long way to go. But, Ive discovered some satisfying and relaxing pastimes. I once laughed at adult colouring books...as if!

But I bought a book and a pack of felt tips and to my astonishment, it's incredibly relaxing. 5 mins or half an hour. 12 months ago I'd have thought it ridiculous but there's a sense of achievement and these days, I'll take any positives.

[Wraysbury in reply to Hidden]

Excellent. Me too!!

[AndrewT]

Dear Wraysbury,

Firstly, what a Strange Thing, for your GP to say. Secondly, and I know others have answered you here, if you DO have any questions regarding Kidneys/ Dialysis/ Transplant etc. I am 'your man'. (Though That, does sound, rather conceited- I'm Not honest) I had a Kidney Transplant, in July 2013, after four years on dialysis. My Kidney Condition, along with Brain and Heart Damage, was caused by Vasculitis. Apparently Five (maybe, up to seven) 'Overlapping' Stains- of ANCA- Vasculitis.

Anyway if I can be, of any help, please do contact me. In any event, I know, that WE ALL wish you well.

AndrewT

[Wraysbury in reply to AndrewT]

Thanks you.