A year later : A year ago I posted about my... - Kidney Disease

Kidney Disease

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A year later

bevgt profile image
20 Replies

A year ago I posted about my kidney results with high blood pressure and small amount of protein . I now have blood pressure under control but my latest results show my gfr at 47 and my serum creatine level 102 ...Last year it was 53 gfr and creatine 93 .. My cholesterol has gone up and weight by half a stone .I made sure I was well hydrated before blood test drinking 4 glasses of water . Would my raised cholesterol effect my gfr result or would it be my kidney result effecting my cholesterol. My Doctor doesn't seemed bothered but I feel like I am on a slippery slope , seeing nurse tomorrow .Would really appreciate any advice . Meant to say I have type 2 diabetes too , . My numbers are a big jump in one year could it also be because I follow a protein based diet for diabetes and after reading Lee Hulls book I should be on low protein , sorry to ramble on but I am really concerned and upset .

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bevgt
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userotc profile image
userotc

There is a reported association between cholesterol and ckd although my 1st link below indicates it could be either way around. In readiness for the inevitable prescribing of statins (!), note also the indication that they can cause kidney damage, also in 2nd link. If in doubt, see a qualified Nutritional Therapist specialising in renal.

What level is your cholesterol?

webmd.com/cholesterol-manag...

drugs.com/medical-answers/m...

bevgt profile image
bevgt in reply to userotc

My cholesterol was 6 and high triglycerides. I only take 10 mg of pravastatin

bevgt profile image
bevgt in reply to userotc

Is a Nutrionalist therapist better than a Nephorolgist not really sure which way to go

userotc profile image
userotc in reply to bevgt

That's easy for the nutritional route since nephrologists are not generally trained and qualified in nutrition whereas Nutritional Therapists are - and the best ones are also BANT-approved. For my mum, we learned this after her nephrectomy when we received very poor/abysmal nutritional advice. She has since followed a NT protocol which has improved her kidneys very significantly.

Mum's total cholesterol is a bit higher than yours, stable at ~7 (likely due to post-menopause and/or ckd) but she doesnt take statins or indeed any other medication.

bevgt profile image
bevgt in reply to userotc

Just seen nurse my cholesterol has doubled in a year so upped the statin . Referring me to a Nutrition therapist. Doing renal function blood test and urine in in a couple of weeks . Will try and stay away from meat to see if this helps

userotc profile image
userotc in reply to bevgt

If youre in the UK, Id be shocked if a GP referred you to a NT, more likely a dietician. Presumably the medic that prescribed increased statin is aware you have CKD and so is aware of potential risks, as per my links eg drugs.com.

in reply to bevgt

You need a Nephrologist for your CKD and an a Renal Dietician for the nutritional part; he/she will steer you to a kidney friendly diet and see if diet may help you with lowering your elevated cholesterol levels.

Bassetmommer profile image
BassetmommerNKF Ambassador

Chronic kidney disease is progressive sometimes, no matter what you do. The thing is to find out if there is a cause such as stones or a hereditary connection. Look next to medicine. Ibuprofen is a huge killer of kidney function, but there are many other meds that are not kidney protective. Some mental health meds are really bad such a lithium. Statins are not good, and most doctors will argue that. But there are others, and you should have your pharmacist go through them with you. Then your diet is very important. It is not just low salt, but lower protein and good protein. Red meat is terrible, pork, lamb and beef should be eliminated. Watch dairy such as milk and cheese. Keep away from foods with additives and they are every where. Cook more for yourself. YOU need to keep the sugar way down and in control. Diabetes is a big contributor to CKD. All these things can make a huge difference in stabalizing your CKD. But you have to make the commitment.

bevgt profile image
bevgt in reply to Bassetmommer

Thank you for your replies yes it is a Nutrition I have been referred too . Also the nurse was aware of kidney problem when she upped dose of statin . Think I will wait until second blood test then get a doctor to go through medication with me . Some sites say metformin is no good others say its good for ckd . Its very confusing .

Darlenia profile image
Darlenia

Kidney disease usually doesn't happen by itself - an underlying condition often drives the decline - a serious infection, an autoimmune disorder, etc. The leading cause for CKD is diabetes, T1D and T2D, one of which you seem to have according to your post. I was one of those who, for years, assumed diabetes and kidney disease were two independent conditions, when diabetes was actually an "instigator" with an outcome "kidney disease". Diabetes works on narrowing and stiffening the blood vessels throughout the body that can affect most anything - heart, eyes, limbs, and more - including the blood and filtration vessels in your kidneys. If protein is flagged in your labs, it often indicates that diabetes has taken aim there and the kidneys are struggling. Diabetes uses glucose to form the cholesterol, which you also mentioned, to narrow and block essential vessels. So, if you have diabetes, you will usually have lower levels of HDL (good) cholesterol and higher levels of LDL/non-HDL (bad) cholesterol. So, in essence, one thing leads to another and out-of-range glucose/sugar is the instigator. The good news is that, if one is a T2D, one can usually stop the problem by keeping a very tight hand on one's glucose levels through diet and treatment. It's very important to track and keep A1Cs in the normal range in that regard. For T2Ds, some focus on what is causing the problem (sugar/carbs) and others focus on the end result (protein). In our case, my hubby clearly waited too long to reign in his sugar and carbs, lost his battle to save his kidneys, went on dialysis, and has now received a transplant. Interestingly, his mom took steps to curb her diabetes by watching her sugars/carbs in her 40s, dropped her weight so her pancreas didn't need to struggle, never went on meds, and lived well into her 80s. So two different people, two different outcomes. After going through a very harrowing period of time with hubby, I'm simply very grateful that my hubby is laser focused on his diabetes diet, tightly controlling his carbs/sugars and generally limiting his protein to "fins and feathers", with the full support of his medical team. So, while looking at diet plans, please keep in mind your underlying condition and seek direction from medical professionals. Your labs should drive the selection. I think you'll find your way soon.

bevgt profile image
bevgt in reply to Darlenia

Thank you Darlenia I have mentioned my diabetes worries but nurse seems to think my ha1bc is too low being 48 to cause any problems , I agree with you I am not so sure . They have telephoned me tonight to add another blood pressure pill for 3 weeks then test blood again . So will do that then try and see a diabetes specialist . I really appreciate your reply as I am a great worrier.

Darlenia profile image
Darlenia in reply to bevgt

No need to worry. You're proactive and that's wonderful. You're apparently pulling a good medical team together. I sense you'll soon have a reason for why your labs are like they are and point you in a good direction. Stay in touch!

bevgt profile image
bevgt in reply to Darlenia

I will do as soon as I know any more Thank you

Blackknight1989 profile image
Blackknight1989

First of all, lab results fluctuate and will never be the same lab to lab. Your eGFR dropped 5/6 points and Creatinine changed 9 points. Out of each total values that’s under 10% and most likely just a variation in the results and not an indication either value is actually moving lower. The next couple of labs will give you some idea whether it’s just that or something more to be concerned about. My guess normal lab inaccuracy and body level fluctuations of said values. No need to have concern yet and my guess is the next couple of labs the numbers go up/down from where they are now. Not because you are getting better or worse simply because of the test being slightly inaccurate as most labs are and/or simple variations in your body chemistry. The kidney lab values and your cholesterol that you indicate is high have no correlation so you cholesterol is likely due to normal causes, too much fat in the diet, not enough exercise, hereditary and others.

Yep you must change your diet as too much protein is harmful to the kidneys. In my opinion wasting money on folks like Hull is just that a waste. You can put your own diet together without buying a self-promoting book of some guy who decided to eat right for life and now thinks he’s the expert so charges patients who suffer the same issues he did for his so-called “expertise.” Deciding your new diet that limits protein you have a chance to break from Hull and use the guidance provided on several kidney websites. I’ll post a link to one that should help. Best of luck to you in your CKD journey! The link below is from NKF and the nutrition page of their website. The second is from the American Diabetes Society, since you mentioned you suffer from the same. Hope they help!

kidney.org/nutrition

diabetes.org/healthy-living...

bevgt profile image
bevgt in reply to Blackknight1989

Thank you for your help will read links

Blackknight1989 profile image
Blackknight1989

No problem and I want to add that my eGFR fluctuates between 17-23. In fact labs at the VA are almost always under 20, then a week later when I’d see my nephrologist that test always over 20, like 22 to as high as 29 averaging about 23. This has been the case for 2 years. Then last VA labs instead of sub-20 my eGFR was 23. So a couple of things . That’s a difference of as much as 6 points. On an average of say 20 for both the VA labs and the nephrologist labs, that’s a 30% fluctuation. Guess what, if you read the scientific studies on eGFR and go to sites like PubMed.Gov or NIDDK. gov, you’ll find the scientific community talking about the fact that eGFR is inaccurate up to 30% from lab to lab and based on the formula the specific labs use to calculate eGFR. At one point there were over 70 different calculations for eGFR. Then you have the eGFR versus mGFR debate, mGFR is true gfr measured a completely different way with a much more detailed lab work up. So my point…don’t get wrapped up in the variations of your reported values. Instead look at the eGFR number over a length of time 6 months to 2 years and at least 4-6 different lab tests to spot the trend of the values. If the value is consistently lower on each test, that is indicative of a problem and maybe kidneys are sustaining more damage. If it’s trending up, you don’t move stages like you don’t go from stage 3 to stage 1 (despite some posts here touting that fact. If you improve your eGFR and stay higher like that from stage 3 to stage 1 you were most likely misdiagnosed and instead of CKD you had AKI which can and often results in complete recovery), you don’t regenerate kidney nephrons (unique cells) as the damage is permanent but you do “unload” your kidneys and ease their workload. So individual results or even 2/3 labs do not a trend make nor do they indicate a problem. With eGFR it’s all about several tests and the direction the numbers are trending.

Finally, here is another link with a downloadable cookbook for diet. The site is specific to rare kidney disease and about children/teens. However, the nutritional information is relevant to all of us so I thought I’d add it because it has the cookbook and some additional not covered on the other links. As always my best to you and I hope some of the information helps!

nephcure.org/livingwithkidn...

honeybug profile image
honeybug

hi bevgt 😊

Sorry no advice instead empathy because my primary doctor says stage 3a gfr isn’t a concern atm. I argued both my now late brother had total kidney failure one side and he and my 93 yo blind dad diagnosed with 20 something % gfr years ago.

My recently passed brother (13/3) was instructed to take his lasix with every 3 pound increase in body weight due end stage heart failure. My dad is instructed so too but doesn’t…he just pop’s nitroglycerin like candy instead. Both he and my beloved brother never liked being told what to do about anything.

I know that heart failure plus kidney failure are imminent but I’m at a loss why my doctor won’t address this test level.

Sooooo after saying all of the above I empathize with you send you hugs and well wishes my new friend. 🤗💕

Love and prayers

EJ 🙏🕊🤗♥️🥰🌿🌸🦋

PS I’m T2D as well as my brother also.

bevgt profile image
bevgt in reply to honeybug

Thank you for reply it's the same here they just say nothing to worry about . Well at least I have another blood test in 3 weeks so depends what happens there in which way I go with treatment . Nurse saying my diabetes level to low to cause problems but I'm not so sure .

honeybug profile image
honeybug in reply to bevgt

so sorry you get this treatment too. My A1C was 10.7 Dec 2019 dr said I had insulin severe/quote lose body parts severe diabetes I lost 34 pounds and doing great until my gastric crisis/hospital admit and endoscopy diagnosis of Peptic Ulcer Disease which I managed to survive the treatment protocol managing the bloody diarrhea for 2 months by eating Ramen Noodles…which creates diabetes complications

Shortly after my recovery from active ulcers my late brother went into sepsis on life support for 10 days and it’s been a constant crisis for him until released from hospital 13/3 went straight away to chemist and suffered a full cardiac arrest just a few feet inside the building

He was ravaged by diabetes neglect his sepsis damaged brain/heart complicated by COVID all of organ failures let to his demise

The writing is on the wall for me…it was witnessed by me…I follow instructions I don’t

.

honeybug profile image
honeybug in reply to honeybug

sorry cell locked up wouldn’t jet me finish t this novella;

want to go through what my brother did. I’m going to stand my ground at my next appointment.

Apologies this is so long.

EJ 🤗💕

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