Puzzled.

[5usie47]

Hi, my first time posting as I am very puzzled.

I’m a 71 year old female in the U.K., normal weight for my height, low normal blood pressure my whole life, don’t exercise per se but am physically active most of the day doing DIY, huge garden, caring for 5 dogs etc. I have slightly high cholesterol but it is familial and my doctor has advised that there are no diet changes to what I normally eat, that will make a difference.

Following a positive screen for bowel cancer, I had two dodgy polyps removed (in the nick of time) and am followed up every 3 years. After the last check up, I developed symptoms of breathlessness, irregular heartbeats and fatigue. I had a great deal of trouble being taken seriously by my GP despite buying a heart monitor that clearly showed what was happening.....long story short 😉 I ended up in A&E with what seemed like a heart attack but fortunately wasn’t but my eFGR was reported back to my GP as 53.

There was no recall to my GP so I made an appt with a different doctor at the practice and she has been excellent. Arranged further bloods as a starting point and my eGFR was back up to 61. She explained this as the fact that at the time of the original reading, I had been waiting in the hot hospital atmosphere for over 5 hours with no liquids.

I had already signed up here and been reading at that point so was able to ask appropriate questions (thanks to you all)

Now the puzzling bit, she refuses to acknowledge that I have a “disease”, thinks that for my age and gender everything is perfectly ok, no lifestyle changes needed and just make sure I drink “enough”. She said the only surprise would have been if my eGFR was any higher at this time of my life.

Any suggestions please? Thank you.

[Jonquiljo]

Your breathlessness, irregular heartbeats and fatigue should be followed up on. These should have nothing to do with a GFR of high 50's low 60's. I'm not sure if it was followed up on, and am not sure what an A&E is - so hopefully all that's OK now.

GFR is a "work in progress" - the only way I can describe it. It's IMO, not a very good marker for kidney dysfunction, especially in the elderly (I'm 65). ALL the kidney associations (presumably prompted by nephrologists) put out this staging system for kidney disease in the early 2000's. It isn't the greatest as it measures serum creatinine (by blood test) and uses a simple formula that puts you in one of the 5 stages (5 being the worst). Below 60, you are 3a.

But there are a million things that can affect creatinine - can't get into them all here. The essence of the story is that GFR and staging is "poor" at best for the elderly. If you are in stages 4 or 5, it may make sense. But they have millions of people like us (Over 65) running around with "below 60" GFR's that really have nothing wrong with them.

Your Dr was smart by not making a big deal of this. Even if you had been in the upper 50's (I am in upper 50's), the chances are that very little is wrong with you at 71. For me, at 65, I have the same problem - nothing has been found wrong. In fact lots of researchers have come out and said that tens of millions of patients over the world would not be classified as "potentially CKD" if they had slightly low GFR's , are over 65, and don't have other CKD symptoms (like protein in urine - and lots of it).

So this is probably a lot of information for what is something NOT to be worried about. Good luck and the best to you.

[5usie47 in reply to Jonquiljo]

Thank you very much for your comforting reply. A&E is the U.K. equivalent of an Emergency department in the USA.

I believe the heart/breathlessness are the result of vagus nerve stimulation during a colonoscopy although my GP was reluctant to confirm this. I have had a heart scan, 24 hour urine collection and 24 hour ECG and have been diagnosed with 4% ectopic beats which doesn’t really explain how I could have arrythmia for 5 hours at a session. It’s mostly settled now but was a worrying and debilitating 2 years.

It was worrying to find out about my reduced kidney function and my first thoughts were looming dyalisis but I now try to view it in the same way that I view my failing eyesight and hearing....it doesn’t necessarily mean that I will go blind or deaf and the only difference with my kidneys is that I now know about it.

Thank you for your kind response.

[Jonquiljo in reply to 5usie47]

Personally, I doubt you have much of a chance of dialysis at all. Not only do kidneys get older as we do, but I seriously wonder if these "estimated" formulas are really that accurate or even that useful until you get to seriously impaired kidney function. You are far from that.

[MAS_Nurse]

Hi Susie47 and welcome to this caring forum. This must have been a stressful experience for you. I hope you have now recovered from the time you were admitted to A/E. According to the National Kidney Foundation, older people will have lower than normal GFR levels because GFR decreases with age. Normal value ranges may vary slightly among different laboratories. For more information, please visit the following website---

National Kidney Foundation

kidney.org.uk

Are any other forum members able to help Susie47, please? Thank you and best wishes.

[5usie47 in reply to MAS_Nurse]

Thank you for your advice, I feel silly now for worrying so much.

[madonbrew in reply to 5usie47]

Hi Suzie,Really don't feel silly!!Kidney disease comes in 5 stages...I'm 40 and have a egfr of 37 which puts me at stage 3b. Initially my egfr dropped from 84 to 44 within 4 years. I think it's quite dependent on if your count is stable or if it it dropping over a period of time. I don't think you're generally put on dialysis until your egfr is under 15...roughly!! Hope this helps to reassure you a bit. I'm also still working 25 hours a week. Don't work fulltime as I have multiple other health probs but basically live a normal life!!

Dee x

[lulubelle6766]

I had to change doctors because I was not satisfied. I am very pleased with my new doctor.

I went on the dialysis diet and gave up taking my chemo drug.

In the past 6 months, my GFR has increased by 8 points........very exciting for me.

My GFR increased from 30 to 38!!

Best of luck to you.......Lu

[5usie47 in reply to lulubelle6766]

Best of luck to you too, that’s a huge increase, well done.

[lulubelle6766 in reply to 5usie47]

Thank you.......hope you feel better

[RickHow]

Nothing to be puzzled about. You yourself said you are fond of this new GP. And she is telling you truth. For your age range (I'm 69, so we are "same" range), all sounds normal (for kidney). You must remember something my doctors yell at me each time I visit. Don't waste time reading different internet sites. These sites will give you very general information, based on what they call "normal". Based on formula's and guidelines. But without any regard to so many other influences. Medications taken, other diseases, that we age at different rates, heredity, etc., etc. For example "they" will say the "normal" egfr is over >60. But you must remember that a person of 18 or 20 is going to have a much higher egfr than a person of 71!. And even among all 71 year olds, it will not be the same. I'm sure you experience, as I do, as we associate with other individuals our age, the vast difference between us. Some at our age seem much older, while others seen active and vital. Some smoke and drink, others not. Some are large, others are not. Another factor is all these things on the internet do not know you. Your doctor knows all about your "insides". Your blood, your urine, your medications, your history.

[5usie47 in reply to RickHow]

Thank you, I’ve made my peace with it now but I was puzzled initially to be told in Accident & Emergency that I had level 3 Chronic Kidney Disease and then told by my GP that I didn’t have a disease at all.

[mercevo2]

I have a GFR of around 29, have had about 15 kidney stones,,,some hurt like hell, the last 2 passed with zero pain, I take apurinol to help.......but I have started a month ago to take Cannabis oil....a 1.1 thats one CBD to one THC, you cant buy cannabis oil with THC in the UK, but you can in the US, whether it does any good, I will have to wait for my next blood test, due later this year. It ceratinly helps giving me a good nights sleep, without it, it takes me 2 to 3 hours to get to sleep, with the oil , only half an hour, very happy with that.