Referral

[Curry123]

Hi all,

I've just found out that I have CKD and have had it since 2017 and GP never told me.

I'm stage 3.

Should my GP be referring me to a specialist?

Many thanks

[S_dillow]

definitely.if they dont you request to see a nephrologist

[userotc]

Sadly this is so common on here and elsewhere, basically it seems because medics generally can't do much/anything (unless you have high BP, proteinuria or such like ckd associations). But YOU can so they should ignore their arrogance and tell you that you have ckd.My dad found out via her online Patient Access years ago that she'd had it for several years. Too late to prevent a tumour and subsequent nephrectomy >5y ago! But we radically improved nutrition and lifestyle to almost double her eGFR and weaned her off a BP tab.

So medics should be sued for witholding such information - but sadly they're bullet-proof!

[bbeba103]

Yes you should be seen by a nephrologist to monitor you, sadly I didn't find out til I was already in stage 3 my primary care Dr didn't even tell me. I found at home when looking through my paper work and a referral to a urologist, I have had kidney stones removed around 2016/2017. I was in total shock, because I kept having follow up appointments for my anemia. A year ago is when I was diagnosed and my egfr has gone down and back to go back down. I have a appointment in January. It's good for a nephrologist to do see you wishing you all the best.

🌹

[Buspasswalker]

In the UK sadly GPs don't refer to a nephrologist until at least stage 4 unless you have other serious health conditions which may be affected. I asked for a referral to at least a dietician as diets for high BP and CKD are at odds with each other. Told not possible and that I would have to pay to see one privately. I was told I would need blood tests every 3 months, but they will now only do them annually, and no advice is forthcoming - have had to do all research myself. Good luck!

[orangecity41 NKF Ambassador in reply to Buspasswalker]

In US if on some Medicare plans they do not refer to a nephrologist until reach level 4

[Buspasswalker in reply to orangecity41]

Ah- that is interesting . Reading replies from some of those in the US I assumed it was the norm for a referral to be made to Nephrology as soon as CKD was diagnosed. Stage 4 seems late to me - I would have thought that information and advice at stage 3 would be better to help to avoid decline as soon as possible.

[jodaer in reply to Buspasswalker]

I think it depends a lot on the insurance you have. If you're in an HMO you usually need to be referred to a specialist. I'm on original Medicare and I don't need a referral at all.

[Buspasswalker in reply to jodaer]

I'm in the UK - we don't have insurance as per the US.

[orangecity41 NKF Ambassador in reply to Buspasswalker]

I agree.

[Turtlepad513]

a nephrologist is the best person to see. Good luck.

[Buspasswalker in reply to Turtlepad513]

No referrals made in the UK at stage 3 unless there are certain other medical issues.

[Blackcat122]

Hi Curry123I noticed you are based in the UK, sorry I have to agree with buspasswalker that you won't be referred to see a nephrologist till you are stage 4. I was diagnosed stage 3 ckd in June this year, but looking back at my records from 2018 my egfr was decreasing yearly and I want told anything about it. My GP has not given any great advice, much of my advice had been from here and other forums, and the internet. My GP wanted to test yearly, although my egfr dropped by about 20 in 12 weeks, but I asked for every 6 months for reassurance. I've followed a low salt diet and tried to eat and drink healthy, but no other testing had been offered to me

Good luck with your GP

[Buspasswalker in reply to Blackcat122]

Your history sounds just like mine except for when you had the big drop in your egfr. You would think that more information and advice would be offered as preventative measures would surely cost the NHS less in the long run. My GP's response was that they don't have time to give out the necessary advice in the standard 10 minute appointment time!

[Blackcat122 in reply to Buspasswalker]

Hi buspasswalkerI knew I wouldn't be referred to see a kidney specialist as the year before I used to accompany my husband's aunt who had ckd stage 4, on her hospital visits, so I learned a lot about ckd, but not knowing at the time that I had it.

It's strange the attitude of the NHS towards the disease, surely if you are given the knowledge to help stop your ckd from getting worse, then it benefits you and the NHS

[Buspasswalker in reply to Blackcat122]

That is exactly my train of thought - prevention better than cure etc. I can't see how it benefits anyone to let things get worse before giving further advice and treatment.

[RoxanneKidney]

Basically only if you have protein in your urine or high blood pressure etc

[Buspasswalker in reply to RoxanneKidney]

Sadly it doesn't appear to make any difference if you have high blood pressure etc. My GPs response was that nobody knows whether high BP is a cause of CKD, or if CKD causes high BP. A sort of chicken or egg scenario!

[Aloha49]

YES! Ask for a referral very soon to a nephrologist. Maybe there is medication you can try that my slow the process. All the best. We have to advocate for ourselves in our health care for our entire lives. BB

[Buspasswalker in reply to Aloha49]

Sadly in the UK they won't refer at stage 3.

[Hidden]

Same here.

Yes, request a referral and request a referral to a Renal Dietician.

[Buspasswalker in reply to Hidden]

Referrals not available at stage 3 here in the UK. The advice is to find a dietician and pay privately if you can.

[Hidden in reply to Buspasswalker]

That's unfortunate, I'm in Canada, I was referred as soon as I was diagnosed. There is also a Dietician in the Nephrology Clinic I go to, easy access, automatic referral.

[Buspasswalker in reply to Hidden]

That makes much more sense. Why wait until things get worse? Surely it benefits everyone to give advice and treatment as soon as the problem comes to light?

[WildIris]

I was not referred until my eGFR hit 24. Turns out I was dehydrated that day and its higher since then. There are things people do without worrying, like eating salty foods and not drinking enough water and eating meat that are harmful to kidneys, so it would be good to be warned earlier when your creatinine is increasing over time. I'm in the U.S, by the way and its the same here, in terms of not telling people until they're in stage 4.

[kellyscats1 in reply to WildIris]

Here in the US the type of plan you have makes a difference. many people go for the Adantage plans because the fll for the adds on TV and are cheapere rther than btting a supplement with regular medicare. When my GP was not concerned about my dropping EGFR and knowing my dad had died of kidney disease i made an appointment with nephr9logist who follows me closely.. On my first visit he ordered a bucket load of labs..There are no renal dieticians here.. heck not even for diabetics but there are a lot of good books you can follow..it is more complicated if you are also a diabetic.

I was uder the assumption that you had the option to also buy prate insurance in the UK...I run by every medication I need with nephrologist ,,, he is my go to....