Kidney declining and need advice please

[Onedge]

I’ve been diagnosed with CKD. I think stage 3. I am having another blood test in August 2022. If my levels have gone down further I will get specialist help.

Would love your opinion on my levels so far as I’m concerned in my reduction in kidney function.

August 2021 creatinine 98 umol/L ( range 45-84)

Egfrcreat is 51

Potassium 4.8 mmol/L ( range 3.5-5.3)

Sodium 139 mmol/L (133-146)

Urea 3.5 mmol/L ( 2.5-7.8)

My kidney has gone down by 10% and my creatinine up by 11% in three years. Endocrinologist has said its ok to leave alone but I have said I’m going to wait until next blood test. If the results are worse I’m going to go privately. Can anybody advise me. I have various health problems eg thyroid,sjogrens,neurological, insomnia,fibromyalgia,chronic fatigue syndrome,low blood pressure to name a few. Many thanks

[orangecity41 NKF Ambassador]

Here is a link to National Kidney Foundation explaining the eGFR and levels that may be of help to you. Many of us are on prescribed CKD diets that have helped stabilize the CKD levels. kidney.org/atoz/content/gfr

[Onedge in reply to orangecity41]

Thanks for your reply. Where do I find a CKD diet from please? Also, my potassium and sodium results are high but not out of range yet but urea is low ( is this good news?). I urinate a lot during the day but every hour through the night and to be honest with high volumes that I just can’t understand. My last cuppa is at 4 pm then after that it’s just sips of water with my tablets and a very small amount of tonic water with my food to help with my leg spasms and cramps. I’ve introduced decaf tea and I use oat milk as I’m sensitive to dairy and lots of other things. I rarely eat meat. Finally, what blood tests should I ask for and what kidney tests should I expect from specialist at this early stage? I suppose I need to find out the cause of my kidney disease first!

Any help gladly received

[orangecity41 NKF Ambassador in reply to Onedge]

Yes diet is something you need to discuss with your Doctor and get a diet tailored to your needs, based on your bloodwork for eGFR, sodium, potassium, phosphorus.

[Onedge in reply to orangecity41]

Ok I’ll be seeing my doctor soon. Do you think my endocrinologist is more suitable or should be the leader in the way forward??

[orangecity41 NKF Ambassador in reply to Onedge]

I really cannot answer that.

[Milli77 in reply to orangecity41]

You have low blood pressure this can be causing kidney damage. I was given high blood pressure medication which caused acute kidney failure. My blood pressure went to low

[Autumn47 in reply to Onedge]

Look online for the National Kidney Association. Another is DaVita….lots of info. DaVita has a terrific section on information and recipes. DaVita also has an online session explaining kidney disease, diets, food, etc.

[Onedge in reply to Autumn47]

Thanks will look at site

[FThomp]

Plant based diets and proper hydration are some of the more easy changes that can be done right away to help. Things like quitting smoking or drinking and stuff are hard habits to kick but doable (if you have any unhealthy habits, if not then good!).

Just work on overall general health improvement with exercise as well. It’s all about putting as less of a burden on the kidneys as possible at the earlier stages. Once in the later stages like 4 and 5, that’s when more specialized diets and things come into play. I’ve talked to people here who have stabilized their ckd for years if it’s not due to a specific illness causing progression of the disease. I’m sure more people will expand onto what I’ve said with even more useful info as well. I’m a bit limited bc I was only recently diagnosed and I’m only late stage 1/early 2 so the info given to me may differ to those in lower stages. Take care, be well, and remember overall health improvement and diet are key!

[orangecity41 NKF Ambassador in reply to FThomp]

I was put on CKD diet at stage 3b and has helped.

[Sophiebun11]

kidneyschool.org/mods/ Check out Kidney School for info.

Your kidneys are still functioning over 50%.

If you try a plant based diet, low protein, get your blood pressure and T2D controlled if those are an issue then you can maintain present numbers or even improve them.

It depends on the cause of the CKD.

Best of luck to you.

[Sarah_402]

Hi Onedge, Since you were diagnosed with CKD already and you don’t know the cause, I think you might as well set yourself up with a nephrologist now if you can. August is kind a long time to wait for new labs, and the newest labs are from about 6 months ago right? So a year in between? It can take a while to get into see a nephrologist, get additional testing done if needed, and get a plan of treatment.

For example, I was finally informed of my low eGFR around May 2021. Then in September I had a kidney biopsy done. The biopsy results ended up pointing towards low blood pressure as my cause, which is caused by another condition I have. Now in Jan 2022 my nephrologist is “finally” starting meds to increase my blood pressure, low dose, it’s not really working so I see him in April to reassess. It taking almost a year to get to the bottom of things and correct treatment. Maybe it’s just been slow for me and not others, but if you already know there is an issue why wait? If you haven’t already, you might want to also talk to your physician that treats your autoimmune disease to see if that could be a possible issue?

I know at least some of us wish our physicians had taken some action sooner, when we had blood work that showed low eGFRs.

Good luck, don’t stress too much and make sure your physicians take good care of you!

[Onedge in reply to Sarah_402]

Thanks Sarah,Ive been dealing with insomnia, iron deficiency anemia and vit b12 anemia. Im now on supplements for all those together with my vit d abd folate. I don’t seem to absorb or make vitamins and hormones ; deficient in every one they have tested so far! I’m under an endocrinologist and he doesn’t seem too worried about kidney until it’s functioning at 30% which I find frightening. So I’m going to be proactive now. Luckily I have a good doctor.

I mainly eat veg and consume very little meat. I use oat milk as I’m sensitive to lots of dairy and other things ( had a private health check in august after my last blood tests and it reiterates what I’ve always thought about my reaction to eating or drinking certain foods. So I’m getting there in my quest for knowledge but will look into CKD diets.

Im interested to know what blood tests I do need to ask for and when I see a nephrologist what tests should I expect to get. The real question is what is causing my kidneys to deteriorate and can I stop them.

Any further help would be gratefully received. Thank you

[Sarah_402 in reply to Onedge]

Hi Onedge, I was diagnosed about a year ago and I can share with you what my doctor ordered for me. So my nephrologist has been ordering blood tests: Basic Metabolic panel, CBC, PTH intact level. Urine tests: Urinalysis, and urine albumin/creatinine panels. There are probably other blood and urine tests but that’s what I personally have seen so far.

I had a kidney biopsy done, but I don’t think everyone goes through that. However the biopsy pointed to the problem. You’ll have to see what your nephrologist thinks about your individual circumstance and if you need one or not. It wasn’t that fun and it took a good week to feel completely recover. My mother has CKD due to high blood pressure and no biopsy was needed in her case.

I also had a 24 hour blood pressure monitoring done where the office set me up on a machine. They collected all my blood pressure readings all day and all night for 24 hours. They probably did this because the kidney biopsy suggested low blood pressure issue.

You have some other health conditions and an autoimmune condition so they may want to figure out if the autoimmune is affecting your kidneys or not. Only a physician can factor through different health problems and what can be affecting what. But I believe my biopsy checked whether or not the immune system was involved in mine.

This is just my experience though that I share. I have other health conditions too and many food sensitivities, so I hope you get the answers you need!

[Onedge in reply to Sarah_402]

Thanks SarahI’ll make a note of those blood tests and will feel more knowledgeable when I start to investigate further.my mum has severe CKD but is battling cancer and not in a healthy state really. Problem is I’m not sure what caused her decline- that would have been helpful if it was a genetic problem. I must get to the bottom of mine so I can advise my children. I was very unwell six years ago and my blood pressure was 75/55. I was collapsing all the time and felt I had a stroke. I was prescribed steroids which I’ve been taking twice a day since to keep my blood pressure up. However, with all medication there are side effects and I’m hoping it’s not these steroids causing my problem. I was thinking it’s more to do with my sjogrens as it’s a systemic disease.

I suppose I’ll know more in the next year.

Many thanks for your advice.

[Sarah_402 in reply to Onedge]

Hi Onedge, I forgot to tell you I also have a renal ultrasound, that was easy, but it didn’t show the problem. I think family history is a risk factor, however they don’t necessarily have to be the same cause, at least in my family’s case. I believe there are some genetic causes. I would definitely bring up the low blood pressures and passing outs, sjorgrens, and review all the medications you take with the nephrologist when you see them. Good luck!

[orangecity41 NKF Ambassador in reply to Onedge]

I have macrocytic anemia and low B12. B12 pills are helping.

[sparkie88]

You don't need to worry about yet but try to keep your other conditions under control especially your heart your kidney function will benefit. Also you should learn to reduce your stress that is a major factor to worsening your kidney function and causing your insomnia. Melatonin does not help if you have been taking it for a long time. Try breathing yoga meditation etc try not to take any prescription sleep aid as it will hurt your kidneys more. Also try to exercise like go for a walk go under some sun etc you don't need to see a Nephrologist yet but follow up with your other Dr or primary Dr because your results are still on the ok range. It is most likely the drugs that you may be taking for other conditions such as endocrine or dehydration etc that may may injured your kidneys. So talk to your Dr they will decide if they suspect something else. Finally egfr really don't matter it goes down as you age nothing can stop that besides it is an estimate but other markers does such as creatinine BUN potassium and others. So in your case do watch your sodium and potassium intake . Talk to your Dr about that as well take care

[Onedge in reply to sparkie88]

Thank you for your reply. My potassium and sodium results are high but not out of range yet but urea is low ( is this good news?). I urinate a lot during the day but every hour through the night and to be honest with high volumes that I just can’t understand. My last cuppa is at 4 pm then after that it’s just sips of water with my tablets and a very small amount of tonic water with my food to help with my leg spasms and cramps. I’ve introduced decaf tea and I use oat milk as I’m sensitive to dairy and lots of other things. I rarely eat meat. I have had other issues to deal with first such as insomnia, iron deficiency anemia and vitamin b12 anemia. These together with the melatonin are helping to relax my system down. I’ve been in ‘flight and fight’ mode for years. Very high anxiety. All my other ailments are obviously so much worse with little sleep. I therefore decided to tackle all these issues first. My kidneys are high priority now.

Finally, what blood tests should I ask for and what kidney tests should I expect from specialist at this early stage. I suppose I need to find out the cause of my kidney disease first!

Any help gladly received

[Onedge]

Thanks for your reply. My potassium and sodium results are high but not out of range yet but urea is low ( is this good news?). Also, what blood tests should I ask for and what kidney tests should I expect from specialist at this early stage. I suppose I need to find out the cause of my kidney disease first!

Any help gladly received

[AmandaP1]

You could try following some supplements. I use them.

bit.ly/Kidney-Support-Suppl...

[Blackknight1989]

bit.ly/Kidney-Support-Supplements

Is a fad and not worth wasting your money on. I have been CKD stage 4 for 26 years and have seen these fads come and go. Be careful with all supplements as they can all hurt the kidneys if taken together/too often/too much. There are several studies that state the harmful effects of supplements used without doctors approval. I can post links if needed. Please check sites like NKF, AAKP, and NIH to find studies about anything CKD related.

Onedge you asked about recipes. AAKP has several recipe editions:

NUTRITION

AAKP Nutrition Counter

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ORDER A PRINTED COPY

AAKP Nutrition Counter (Spanish)

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Additional Resources: AAKP Delicious! Recipes Series (several editions to choose from):

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Sample this recipe for free: Strawberry Angel Cupcakes

Link: aakp.org/center-for-patient...

[Onedge in reply to Blackknight1989]

Thanks Blacknight. Will look into all your links and do more research. Good news that you have stayed at level 4 for 26 years. That’s enlightening to hear.

[Blackknight1989]

Glad I could offer some hope…I guess. I have been up/down up/down between stage 5 and stage 4. EGFR from 13-22. Luckily since the initial diagnosis (stage 4 as is so common) I have had terrific nephrologist. Never once have they looked at the eGFR of 13 and tried to start dialysis they have always been just the opposite. Instead they always say that it is an anomaly and I am really stage 4 let’s retest in 2 weeks/1 month/3 months. Always I have been 20-22. So really, at least for the first 10-15 years (age 29-44) it was the doctor’s expertise and not so much my knowledge. However, when I had an idiot GP who wouldn’t refer to a nephrologist I got as smart as I could (and much smarter than the freaking GP) on CKD and my specific illness. I always loved the GP’s face when I refused a pill or treatment he recommended. Funny….anyway, blessed with good nephrologist and that’s extremely lucky I guess. Anyway, check out the links. Any more questions let me know!