Stages/Neph

[Hily]

Hi. At what stage CKD or eGFR were you sent to a Nephrologist?

I was at 3a, right on the line 3b with eGFR 45. My GP failed me on all points.

[S_dillow]

i was 3b by the time my gp figured out something was off.she missed the change in numbers and my nephro was not pleased,to put it mildly

[Hily in reply to S_dillow]

Mine saw the 3a alright and used the "not to worry, we will keep an eye on you" Did the Gp? No no no. I complained regularly that there was something wrong, breathless/losing weight/cold/tired/not sleeping/eventually I had full body itch/dull brain/urinary urgency and all ignored. No blood tests for over 12 months at all. NO FBC, no HbA1c, nothing.

So I was 17 eGFR by then when I met the Neph.

Be like Tulum and see another GP.

[S_dillow in reply to Hily]

i have a new gp and nephro whove been working with me to stabilize things.so far its working

[Pantwhite in reply to S_dillow]

when you say stabilize your thing s and it s working what did he gave you for the itch since when you have proteinuria the dry skin starts as well as the itch to reduce this do you have anything that is effective apart from the diet and excercise

[S_dillow in reply to Pantwhite]

believe it or not he told me to use a cream containing oatmeal and milk.its worked so far.then mousturize.he put me on the right bp meds and vit d and changed my diet.im a type 2 diabetic with chronic heart failure so my routine is a little altered now.

[Pantwhite in reply to S_dillow]

can you recomend me that cream give me brands

[Hily in reply to Pantwhite]

Aveeno

[S_dillow in reply to Pantwhite]

aveeno,jergens if you can find it

[Pantwhite in reply to S_dillow]

the dose of bp you take it every 12 hr s or 8 hr s mg and what about the vitamin d

[S_dillow in reply to Pantwhite]

i take the new one twice a day and the rest once.vitd is 1 a week and its 10meq whatever that is

[Pantwhite in reply to S_dillow]

supposely was taking 1050 mcg of vitamin daily 1 pill but i dont know witch is the correct doce for the bp what are the miligrams that you take

[S_dillow in reply to Pantwhite]

i take five different bp and they all have different levels or mgs.i cantkeep track half the time

[Blackcat122]

Hi, I notice you're in the UK. I've been diagnosed with CKD for nearly a year now, lowest ever has been stage 3b egfr 40 and I've never been referred to a nephrologist. Apparently you have to be stage 4 to be referred

[Tulum in reply to Blackcat122]

I’m not sure that’s correct. I was referred at stage 3a. I have 6 monthly check ups with nephrologist at NHS hospital and they alter medication accordingly. My GP referred me after successive drops in eGfr and protein leakage

[Blackcat122 in reply to Tulum]

Hi Tulum. You must have a wonderful gp. I have no protein leakage so maybe that's the reason I'm not being referred. I did ask my GP at one point about a referral but as my egfr went up slightly last time to 48 he said that they would monitor at the surgeryOriginally it was going to be yearly blood test but I said I would be happier with every 6 months

[Tulum in reply to Blackcat122]

I think you may be right about the protein leakage. What I didn’t mention was another GP at the same surgery didn’t take action and just kept telling me over 13 month period that my kidney function was declining but nothing to worry about. Fortunately she wasn’t available to discuss my latest round of bloods etc and I spoke to a different GP within the practice. He accelerated things and made the referral. We seem to be at the whim of professionals which is not right. I expressed my frustrations to the GP as I felt it unfair not to have a standard approach. Also whilst I know you can’t cure CKD there are things that can help stabilise things such as diet - this should be discussed with people. I consider myself lucky that the original GP wasn’t available and you shouldn’t have to be ‘lucky’.

[Blackcat122 in reply to Tulum]

I'm pleased you have found a more understanding gp. I agree with you too, that although Ckd can't be cured, it can be helped to not progress hopefully to a worse level requiring dialysis or transplant. It's strange as my GP used the same phrase as your original one, it's nothing to worry about. Maybe not for them, but worrying for us! I was also wondering if age was a factor in non referral as I was 64 when diagnosed

[Tulum in reply to Blackcat122]

I was 60 when I was referred so a similar age. I think you’re right though about the protein leakage as articles I’ve read suggest that CKD has the potential to worsen faster if there is leakage. Maybe that’s why 2nd GP acted. It would be good if we were given more info about the whole thing as then we could be pro active. Most of my knowledge has come from the internet and groups like this, yet GPS hate it when you use ‘Dr Google’. What do they expect us to do when they don’t recognise our concerns and/or explain things fully? I hope you get some support eventually from your GP x

[Blackcat122 in reply to Tulum]

Thankyou, I hope you keep seeing the nice GP!!

[Marvin8 in reply to Tulum]

GPs expect you to be submissive, compliant, and not second guess or question their knowledge or expertise.

[Hily in reply to Marvin8]

As I was by now 17%, I was quite unwell and still innocent.

[Pantwhite in reply to Tulum]

the thing is that theres nothign you can do to cure you might stop it or slow it down even though the disease you have or damage it all comes in gfr table or the more protein you leak the more fast it progress and you go to dialisas or watever its all based in excercise diet in what you eat but the question is will i be able to have a long life will i be able to stop the synthoms or reduce them i guess the only cure is the transplant

[Hily in reply to Pantwhite]

When GP overdoses you with a drug that does renal damage with no follow up.

[Pantwhite in reply to Tulum]

when you say gp meaning general practitioner saying nothing to worry about i mean is she meaningful your going down and says everything is fine i guess that s not professional

[Marvin8 in reply to Blackcat122]

The absence of protein leakage is why you're not getting the referral. Your GP sucks.

[Blackcat122 in reply to Marvin8]

I agree!!

[Hily in reply to Blackcat122]

Time to ask for the referral.

[Haggishead in reply to Blackcat122]

my EFGR is 35 stage 3b have never been referred to anyone, blood tests every few months but nothing is said! Am on Rampiril and it says it helps with heart and kidney function!!!

[Blackcat122 in reply to Haggishead]

Hi Haggishead. It seems to be a bit of a lottery as to getting referral or not.

[Hily in reply to Blackcat122]

Ask for copies of your blood results and watch for your e GFR. This is your kidney function estimate. You can see from that how yours is moving. Compare all your other itemized findings too.

[Blackcat122 in reply to Hily]

I've got the airmid app on my phone, which allows me to access all my test results. I've only ever had blood tests done to check my egfr which has fluctuated over the past year from 56 to its lowest 40 last July and settled at 48 this February. I've read on here about people with protein leakage, I've always wondered which kind of test are you given to check for that, is it just a urine dipstick or something different?

[Hily in reply to Blackcat122]

Normally tested in the lab.

[S_dillow in reply to Haggishead]

push the issue if you re at 35 you need a nephrologist.

[Haggishead in reply to S_dillow]

thanks, but don’t think Drs bothered as I am 86 in July! Have heart problems too, kidneys and heart problems seem to go together!!

[S_dillow in reply to Haggishead]

ive noticed that.its a shame they think you re disposable after a certain age.society i guess

[userotc]

Not unusual to be failed by GP, at least here in UK. My mum was only referred to a nephro after a nephrectomy following kidney cancer 6y ago despite having apparently being CKD 3a for several years (dad found out, by chance!).Then again, sadly her nephro has not been helpful so she's had to use a Nutritional Therapy protocol for the significant improvements made.

[runningjohanna in reply to userotc]

hi can you clarify what nutritional therapy protocol is please. You refer to it in your post. Thanks for sharing.

[userotc in reply to runningjohanna]

A protocol from a qualified Nutritional Therapist which should be specific and personalised. An NT should be BANT-approved and has been trained to use nutrition to combat disease. CKD is a good example as it is widely recognised eg on this forum, that the right nutrition can manage it well. There are few direct drugs to "compete" with.

I'd recommend CNHC registered eg via practitioner-search.bant.or...

[Hily in reply to runningjohanna]

Open a seperate post for this.

[S_dillow in reply to userotc]

same in us

[Glyndwright]

I had kidney failure in October 2018, did dialysis for a few months, kidney function went up to 44%, so the consultant every three months,kidney function yesterday's test was 22 % but was told no need to worry as it been around the 20' for two years.

[Pantwhite in reply to Glyndwright]

do you have protein leakage

[Glyndwright in reply to Pantwhite]

Very very little, but my urine is bubble.

[Pantwhite]

had you had any synthoms or something

[Glyndwright in reply to Pantwhite]

When it happened I was being sick, and my weight went up to 17 stone in a matter of three days,

[OldTownhammock]

Last ti.e I saw my GP my Efgr had dropped to 34. I said, don't I need a nephrologist? And he said no. Gave me a list of high potassium foods to avoid. So I can take that 2 ways. 1, it normal for kidneys to decline at my age (77 and one kidney) or 2,he is stuck in the dark ages. I am prediabetic

[S_dillow in reply to OldTownhammock]

you need a nephro for kidney issues,not a gp.hes probably one of those kind that figure if yoyu re past a certain age why bother?id corner him if it were me

[OldTownhammock in reply to S_dillow]

I really like my gp bot I think he is old fashioned. But I am following a modified diet Mediterranean diet til my next appt in sept. If I have managed to improve my numbers then ok, but if they are worse I will have a nephrologist

[Denise-80]

I’m in the US. It was 1986, my urine was the color of grape juice, and the urine dip stick showed 3+ grams of protein. I’ve been under the care of a nephrologist since. I will add that I was in stage 3b before stages were ever mentioned to me.

[Hily in reply to Denise-80]

What was the stage and/ or egf

[Denise-80]

Even though I have seen a nephrologist since I was 19, I was never told what my gfr was way back then…I was only told I had protein in my urine. The first time I recall stages being discussed with me was when I was in stage 3b…with a GFR of around 40-45. That was after my second child and over 20 years ago.

I had a transplant in 2014. Kidney is perfect for me. GFR was 87 today.