Referred by GP but renal team won't see me - Early CKD Support

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Referred by GP but renal team won't see me

Rowdy17 profile image
Rowdy17

I was diagnosed with CKD last November but, like so many others, my kidney function had been declining for several years (although I hadn't been told!). After several more blood tests my GP referred me to the Renal team at East Sussex hospital. Today I spoke to one of the secreataries who told me they don't need to see me and to speak to my GP. I was too surprised to ask any questions. Now, I'm feeling cross and upset. I'm currently at Stage 3a; are they going to wait until it's even worse before they do anything? I feel like I need to know the root cause and what to do to help myself, ie diet, exercise etc. I would welcome any advice about questions for my GP or what I should do next please. I'm in my late 50s and in the UK.

38 Replies

Welcome. Some of us get left to our own devises and have to figure it out for ourselves. There is also the Kidney Disease forum on here as well. Don't panic it is only a disease, not a death sentence, life can continue with some wise choices and changes. There is plenty of info across both forums. Take some time to read some of the threads which will help you on your journey. Be mindful that kidneys decline as we age anyway, you have the opportunity do do something about your kidney decline in 3a.

I didn't waste a lot of time trying to figure out how I got to stage 3a as my medical past is a bit murky, so have concentrated all my efforts on going forward, trying to stabilise the kidneys or at worst slowing the decline.

Rowdy17 profile image
Rowdy17 in reply to Cheyne13

Thank you for your reply and your positive comments. I have read several threads and have started reading the Lee Hull book. If I'm honest it all just scared me! I will speak to my GP (who is brilliant) about the best ways forward.

Hello,If you were referred, the consultant could at least have seen you. That IS what consultants do. I don't know what country you are in but here in the UK we are having phone consultantations due to covid. Perhaps they are cutting back on face to face consultations. You will have many questions to ask and should be able to speak with the experts. For example, a dietician, or a specialist nurse.

Going back to your GP is a good first step.

The 3 things I found useful at stage 3 were; monitoring blood pressure, kidney friendly diet and regular exercise.

Hope you can sort this out.

Best wishes,

Mgt

Netty321 profile image
Netty321 in reply to Mgt8

I had the same experience in Southend, referral knocked out of the system & back to the GP I was stage 3B. Have used this forum & advice to improve diet, exercise & weight leading to an improved 3A.

I was under East Sussex too so your experience is no surprise to me. If you do get an appointment then set off early as parking there is an absolute nightmare. In the meantime keep yourself well hydrated and try not to worry as I am sure there's a link between my kidney decline and the stress I had at work over an extended period.

I’m in 3a alsoMy gp in the Uk, said I can’t see a nephrologist until stage 4

What? They don’t want to treat it to slow it down?

I’ll be j. The USA in may I’ll be seeing one there as normally I’m in the USA 4 times a yr.

I appreciate the. Ha, but they should be more proactive to

Prevention.

Mgt8 profile image
Mgt8 in reply to casbag

That is terrible! My friend in London who is at stage 2 has a regular yearly consultant visit and blood & urine tests....Please insist. It seems that sometimes it is up to us to stand up for what we need.

I have been through all stages, had dialysis and a transplant and have had a regular consultant throughout...

You should too...

Best wishes,

Mgt

casbag profile image
casbag in reply to Mgt8

I get blood and urine every 3 months for diabetes 2

Netty321 profile image
Netty321 in reply to Mgt8

I tried insisting but got the same treatment in Essex, no help whatsoever from NHS, best I could do was request blood tests every 3-4 months to monitor myself - I've collapsed 3 times in the last year - taken to A&E the first time and was told the GP should be monitoring blood pressure & quantifying the urine as I had blood in my urine that night. Discharged to GP care . . . who don't see or speak to you in over a year! Hey ho, as long as they allow a blood test to check where I am then at least I can monitor it myself!

Buspasswalker profile image
Buspasswalker in reply to Mgt8

Standard referral in the UK is at stage 4 or more usually stage 5 only, so your friend is very lucky to have been seen. Most nephrologists would reject the referrals and return to GP. Unless your friend has other underlying issues which might make her a candidate for a referral? Here in the UK it is more a case of deal with it yourself!

Buspasswalker profile image
Buspasswalker in reply to casbag

Unfortunately not standard practice in the UK. In The US they have the sense to see that prevention is better than cure and early supervision can save money later on!

I think we all have gone through that. Don't waste you energy on why. This forum is very helpful. Things you can do is make sure your medications is ok for kidney disease...you can goggle the drug for info. Keep an eye on BP, make sure its in the low normal range. Cut out salt....limit your animal protein...drink 64 oz of water daily ....cut out processed foods...watch sugar...limit dairy...keep your weight in check...do at least moderate exercise daily. I know this sounds a lot but really it's just healthy living. Don't drive yourself crazy just the best you can. Good luck on your journey.

If you are unhappy ask for 2nd opinion. I was seen by local renal team after 3 visits I too was given no information sent back to GP. I was under rheumatology asked for 2nd opinion with who in turn re referred to regional renal team , who after a renal biopsy found 2 autoimmune diseases in kidney . At present on steroids to slow down damaged. I have been given no diet restrictions, apart from a little less salt. If they gave an explanation it might help with people’s expectations . Best of luck

Ya, this has been so true for many of us and you don't have to live in the UK either.So, now it's your job to find out as much as you can about CKD. Knowledge makes this whole kidney journey less scary. There is a lot of good info on the National Kidney Foundation site. Also, you can find help with recipes and diet on kidney.org/myfoodcoach

davita.com is a good resource and has a lot of info also.

With your PCP makes sure you keep your blood pressure in check, get regular exercise ( I walk), drink plenty of water, limit your amount of protein, salt, potassium and phosphorus. Davita and foodcoach will both help with your diet.

Best of luck to you.

SkiingSailor profile image
SkiingSailor in reply to WYOAnne

Davita doesn’t work so well I’m the U.K.. you can’t access their classes etc

WYOAnne profile image
WYOAnne in reply to SkiingSailor

Go to the NKF site kidney.org. Lots of info for you on this site. Also for reipe app go to kidney.org/myfoodcoach

It is NOT uncommon to not be even referred to a kidney doctor at stage 3 (a or b). And I am in the states and understand it is even moreso in UK. But thankfully here, if your primary care wants to refer you , he can. I asked for it and was referred. A TOTAL waste of time. Do NOT be so worried. First, stage 3a (I am 3a and sometimes 3b) is MODERATE loss of kidney function. They really should change the "D" in CKD from disease and call it decline. Because that is what it is. The kidney doctor has no magic wand. Really not even much in the way of any medications, especially at 3b. They run the same tests (blood and urine) that you GP does. You may, or may not, if seen by a kidney doctor be given diet advice (although this too is not going ot usually improve your decline but hopefully just slow it down). Mine does NO advice (kidney doctor) that my primary doctor did not already tell me. To drink water, keep salt and protein levels to the daily recommended intake levels. Walk each day if possible. Again, don't pin your hopes on getting some miraculous help or advice from a kidney doctor, especially at stage 3. Eat sensibly (keep all things such as phosphorous, sale, protein, etc., to daily normal levels). It is not a sin, not going to kill your kidney(s) if here or there your go over the limit. Live your normal life with common sense. For example, if you want that piece of beef (high in protein) once a week, it is NOT going to kill you. If you want that pizza, or ice cream, or sweet, or whatever once in a while, do it! NOT daily is all. I have been at stage 3 for 4 years already and I am in my 70's. As someone posted our kidneys decline with age even in a perfectly healthy individual. As Cheyne13 wrote so perfectly...it is not a death sentence. It is decline, life will go on, just east and drink sensibly (a glass of wine here or there won't kill you), live life. None of us know how long we will go on. CKD or no CKD. Does it make sense to live our days, no matter how many we have, worrying constantly and restricting our lives and joys about something that may not even harm us, or to live the days we have with common sense and enjoyment. Forget the kidney doctor. Follow your GP's advice, eat and drink sensibly, all will more than likely be fine.

orangecity41 profile image
orangecity41 in reply to RickHow

I have been at stage 3 for 5 years and soon to be 80. Prescribed diet has helped me greatly. I still have no referral to a Nephrologist nor renal dietitian.

I have been in stage 3 ( fluxuates from a to b, mostly stays in a) for 3 years. Although I was in decline for 9 years prior to my diagnosis my PCP did not mention it. Now with the advent of computerized medical records it is so much easier for me to track. When I did hit stage 3 my PCP immediately referred me to a Nephrology and Hypertension clinic. Although my PCP was perfectly able to order the appropriate blood, urine, ultrasoud testing etc. and give good advice, my blood pressure was never really under good control. My Nephrologist's specialty was not only my kidneys but also the underlying contributing factors. Finally with the right blood pressure medications I have been able to keep my blood pressure at normal or low normal levels and my kidney function has remained stable. I do have regular labs and since covid have had telephone appts with my Nephrologist. This so far has worked out well.I feel a good Nephrologist is a must because the priority is your kidneys and whatever underlying conditions you may have related to your kidneys.I feel that specialists in general are an important part of your overall health, But the key is communication between patients and all doctors you may be seeing. I have found that computerized records such as My Health , My Chart or whatever else may be out there that you can share among Health Care Providers has been a great asset.

Agree that on line medical records are very important as can see where you are at and monitor the test results. Also easy to share.

Winter1963 profile image
Winter1963 in reply to RickHow

That’s the best advice I have ever read!! Like everyone else, been there, done that with no help except for this site.I simply don’t worry about it anymore..... I could have a heart attack tomorrow!

RickHow profile image
RickHow in reply to Winter1963

You are so right. It doesn't mean go crazy and eat poorly or any of that. But so many posts that I read for folks even as low as early stage 2 who are consumed by it. Fear the rest of their lives. Assume the worst. think of death. I had my kidney removed in 2017 due to a cancerous tumor. My egfr was normal. The next morning, due to only having suddenly one kidney I was labelled STage 3b. Because of the inaccurate formula used to calculate egfr. The formula does not take into considerations such things as having only one kidney (yes some people have normal egfr with one, but I was already 67. The remaining kidney was not about to pick up the slack like a younger person would). anyway they said don't worry about the cancer. It is gone. No evidence of it spreading or in you, etc. Only a 1 or 2 percent chance of it spreading. Two years later it was found in my hip, pelvis, spine. Had rods put in spine. Had hip replaced. Still have tumors in pelvis. No chemo is available for kidney cancer. So my point? Exactly what you said. You never know what tomorrow will bring. Imagine if I spent those 2 years monitoring my every move, food, drink, constant blood tests, etc., etc. They would have been a waste and it would not have changed the outcome. Same with CKD. I've stayed pretty constant with egfr for 4 years. I eat sensibly but I also eat anything I wish. I only avoid alcohol, and I do not smoke. Everything else is sensible moderation (salt, protein, etc.). Life is to be sensibly lived, enjoyed, and not spent anticipating the worst which we can't control anyway. Eat sensibly for low egfr, walk each day, get a blood and urine test every 6 months just to see how its going (it can give you reassurance that you are holding steady, or even if progressing, how slowly or quickly).

Zakcho profile image
Zakcho in reply to RickHow

You are so encouraging. I am stage 3 b and my EGFR is 43 last 15 years. Hbp but the range between 110 to 125 over 65 to 78. I think I am dieting too much what I should. I always scared to eat food. As soon I take food I feel ohh it will increase my blood level. I am always dizzy, fatigue. I totally stop salt in my food. Your word give me hope. Take care. God bless you.

RickHow profile image
RickHow in reply to Zakcho

That range of bp (110 to 125 over 65 to 88) is fantastic. You do not give. I am 71. Have battled bp for long time, but medications do a great job. And I watch my salt intake. I see a general doctor every 3 months and a heart doctor every 6. They BOTH say they prefer my blood pressure to be more in the 130 to 135 range. If I get it down to where yours is I too get dizzy and fatigued. Here is a link to a website that includes a chart for males and another for females that shows what the normal bp should be, based upon age. The idea that normal is 120/70 no matter your age is totally wrong. This chart (and most doctors will advise you the same) shows as we age our normal bp increases. go to this site and scan down a little and you will see the chart. Also, do NOT totally eliminate salt from your body. Our body requires some salt. What I do is I add no additional salt to almost all foods. As most foods come with some degree of salt already added (canned goods, preprocessed meats, boxed items, baked goods, frozen foods, etc.). Talk to your doctor about reducing your bp meds slightly to raise your bp slightly to see if dizzy and fatigue go away:medicinenet.com/blood_press...

Zakcho profile image
Zakcho in reply to RickHow

Thank you rickHow for your kind reply. Yes I am in so much dizzy,fatigue and feel heavy in my cheast. But to be honest I worried a lot about my disease. At the moment I am full of worries. I used to pass so much protein in my urine which has been totally negetive since june last year and I am at stage three last 16 years do you think it will progress further. I don't have any issues with my heart and my age is 47. Thank you. Zakcho

RickHow profile image
RickHow in reply to Zakcho

You worry all the time is not good obviously for your blood pressure. You should be happy with how things are going for you. You have been in same stage area for 16 years. That is GREAT. Your bp, while likely a little low and causing dizziness can be easily adjusted with change in medications so that is GREAT. You had protein in urine but that has stopped, which is GREAT. That is quite unusual for protein "leakage" to just stop. But protein in urine can be caused by a lot of different things, not just CKD, so apparently what was causing it, "fixed" itself. You ask an interesting question will your CKD worsen. As we age (every person on this earth, not just those with CKD) our kidneys slowly decline. This will cause a "worsening" in your CKD. But how fast? That is different for each person. But you need to think of the positive sign. So many years your level has been frozen. So your decline is VERY slow. It is not smart to worry so much, this affects you bp, your kidney, your every day life. Worry will not change what happens to any of us tomorrow or the next day. A perfectly healthy person may wake up the next day and find they have cancer, or get hit by a bus, or have a heart attack. You can't live a happy life worrying of such things. You are doing GREAT. The likelihood is you will continue to be fine. But do you want to live your life full of worry? What is you live another 40 years. You want to look back at 40 years of worry, all the joy life can bring that you missed due to worry and depression? Or look back that you did your best, things went well, and how great those 40 years were.See you doctor about you dizziness (ask about bp), and be sure to tell him you have pains in the chest (and mention to him your high anxiety level which is probably the cause of those pains).

Darlenia, thank you for your reply. I'm not actually diabetic, that's been checked as has my blood pressure which is fine. Sorry to hear about your husband's experience.Thanks for your encouragement too 🙂

Thank you for all your comments and encouragement. I am definitely feeling calmer now! I will speak to my GP and make sure blood tests are done regularly. I already do a lot of walking and I exercise a few times a week so that should help.

I would definitely speak to a nutritionist so that you know what is best to eat to support your kidney. Perhaps you could try to ask your GP about ongoing support of some kind.

Sadly in the UK the standard is that you are not seen by a nephrologist until you are at least at stage 4, but usually stage 5. Amazed your GP even sent in a referral. GPS seem very nonchalant about CKD and you might find your results vary considerably from test to test. I was told that my GP would do bloods every 3 months - I am actually seen once a year by the chronic disease management nurse and that is it. Abnormal results don’t seem to raise any flags with them either! I’ve now taken it into my own hands and watch my diet and my blood pressure, and have set up an exercise regime. I am on the cusp of 3b, but apart from an abnormal creatinine result this time my results haven’t varied greatly over the past 3 years. Afraid in the UK it seems in the main that you have to look after yourself!

It is OK to work with your GP at this point . I also have 3 A . It is the beginning of kidney disease.

Medical doct I rs are not really trained in nutrition ( I feel they should be )

I am a retired RN . Research the internet for diet . What you should be eating and foods you should not eat or at least eat small amounts of .

You want to be careful of high Potasium and high phosphorus containing foods watch the vitamins and minerals you take also. Read labels.

Do not eat chocolate, spinach, bananas , raisins, dates , prunes , apricots, SMALL amounts only of potatoes white and sweet / yams., tomatoes

No dark sodas , what salt , sugar . Cut down on protein.

Do eat organic as veggies and meat as often as possible .

Fish , chicken is better than beef . Lamb is OK in small amounts .

Eat Organic cabbage, Red bell peppers . Onions , garlic .

Cook low salt stews and soups at home freeze in containers to pull out later .

Make sure the websites you read from are good ones not of the wall crazy stuff . Read info from Devitia and medically based . Read info from Seventh Day Adventist sites they are vegetarian and very healthy people but make sure it is diet for early kidney disease.

Read read read , the cook for yourself from scratch.

Do not use too.much canned or commercial frozen foods . They are full of salt and chemicals .

Drink filtered water.

I'm on the right track then. We grow a lot of veggies, make our own soups, sauces and stocks to use in cooking. Some things are going to be harder to cut out but I will definitely try. I rechecked my figures and I'm 3b not 3a, although it may not make much difference at this stage. Thank you for the information.

They won't see you at 3a, 3b and probably not at 4. Do your own research on this site and you'll find a lot of information on how to prevent further deterioration, better than anything you'll get from the Doctors.

You are in your late 50's, but what other medical issues do you have? Such as Diabetes, High Blood Pressure, etc? I would start by asking your doctor what he or she knows about CKD and treating it. At stage 3 a they generally are just in a wait it out mode, which I know personally is frustrating. I would recommend you do some research on medications that affect the kidneys and learn to eat to your labs. Your doctor will be the best to advise you as all kidney patients are different. Take it from me I still have no idea why my kidney failed but was told it was probably slowly failing most of my life. So, I can understand your frustration. If you smoke, are overweight, or eat a lot of high fat processed and or take out meals I would say to stop doing that and that would be a great place to start. I recently got back to stage 2 though my kidney doctor refused to restage me stating I had to do it again in six months.

Thank you HealthBuddyMelissa. No diabetes or high blood pressure - they've been checked recently. I do have an underactive thyroid and take a statin for my cholestrol, although that is now very good. I've been losing weight and have started to take more notice of my diet so will continue with that. I'm not hugely overweight, could probably lose another half stone. Thanks for your advice, much appreciated.

Some statins may affect kidney function. But, since you now have your cholesterol under control your doctor may not want to stop or change that. Best wishes! Keep us posted. BTW, losing weight alone can help improve kidney function.

Hi! I had to double check the name at the beginning of the post to see it want me - exact same experience! They just are so blasé about Kidney disease. You’re in the right place here though with fellow sufferers. I was diagnosed in Nov, even though I now know that my kidney function has been declining for at least 11 years. I stopped eating animals and increased my water intake. My eGFR is now 73 ( from 51) . Unlike you my GP isn’t interested and can’t bring herself to admit that I’ve helped myself. I too have an underactive thyroid. It seems the two go together frequently. Good luck

Rowdy17 profile image
Rowdy17 in reply to SkiingSailor

Thank you. Our stories are definitely similar. Had a good chat with my GP yesterday, he has been brilliant. He shared my frustration at the lack of support now rather than waiting until it's much worse and more costly to the NHS. My next step is to try and find a dietician who can give specific dietary advice for me - don't really know how to do that but will do some research. I am drinking more water and I only drink weak, decaff, black tea usually which is like drinking hot water!! This forum is definitely good for our mental well-being, so pleased I found it. Take care.

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