My Latest Blood/Urine tests Have disappoint... - Kidney Disease

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My Latest Blood/Urine tests Have disappointed Me! More Questions!

Dllfb profile image

Just wondering how high was your creatinine levels before there was a detection blood potassium in bloodwork and albumin in urine. I am disappointed in my most recent bloodwork this week. I’ve been following a mostly plant based diet, no dairy, 10 cups of water daily no bananas, no potatoes...yadda yadda..etc.. since Jan when my gfr dropped to 54 and creatinine was 97...all others numbers were in acceptable range. In April I was delighted with a gfr of 78 and creatinine of 72, however my cholesterol was elivated to 5.65. I’ve never had issues with cholesterol before so got told me to cut down breads, pastas etc...well I then had 2 slices daily, so I cut down to 1. I lost 20 lbs by this time and I’m of average build so kind of hard to maintain weight on this way of life! Well just got my results of this weeks bloodwork...disappointed! My gfr dropped back down to 67 and creatinine is 81. About the same numbers as last summer when I was eating whatever I wanted! My cholesterol has gone down but now....something I’ve never seen out of acceptable range for me is my potassium is 5.6 mmol/L and there is albumin in my urine at 7 mg/L. however my creatinine/albumin ratio is .6 mg/mmol, which is good. Plus my urine shows that keytones are at 2.0 mmol/L. All other bloodwork and urine counts are normal. I know that there are a lot of you out there who have worse numbers than me but I’m trying really hard to be proactive....seeming this decline is upsetting to me...after eating the way I am. I’ve been waiting for a nephrologist appointment since Jan. and I’m going next week. Thank goodness. But still wondering why my potassium is now high and I have albumin in the urine when my creatinine level is at an acceptable 81 mmol/L even with this way of eating? Can protein and potassium still seep through the kidneys and into the urine with these creatinine numbers? I’ve never had any symptoms...just going by these test numbers.

38 Replies
Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Dllfb I just had labs drawn today and found out that my Potassium was up to 5.6. This is very disappointing to me too. I switched to plant based 5 months ago. The two month labs the potassium dropped to 5. and I was super excited. Now, no meat, chicken, fish or other animal protein for over 5 months, and the labs were not as good as I had hope. I think part of the issues was the hour of the labs, and fasting for over 18 hours. I probably was more dehydrated than usual, too. The bottom line is this. Its numbers. And although they measure things we need to be aware of, it is a picture of the time the labs was done. I plan on not panicking and waiting 2 months and redraw labs. Meanwhile, I am sticking to plant based. I feel better and I think it is in the long run helping.

All the research and questions I have asked say that potassium from animal products is totally absorbed while plant based is half absorbed.

Also, it did not help we just came back from vacation where I was not as good as usual and just had an infusion, which also impacts my numbers.

Try not to be too critical or hard on yourself.

Dllfb profile image
Dllfb in reply to Bassetmommer

Thanks for the reply Bassetmommer! You are giving me some courage! It’s so demoralizing when I try so hard to stick to being good and numbers go the wrong way and other bloodwork problems, never experienced before, pop up. Your 18 hours of fasting was certainly a long time. I fasted for 14 hours. How long are we actually suppose to fast for these blood works?

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Dllfb

I intermittent fast as a practice. I was doing 16-18 for a long while. Then my new doc suggested I eat breakfast...... pffft. So I am only doing 14. Not sure if adding the oatmeal was such a good idea, but then its all trial and error. Before a lab, 12 hours is the usual.

Dllfb profile image
Dllfb in reply to Bassetmommer

Yes...thought so. I used to love to cook. Now beans and 3 cups of fruit or veggies daily is my staple with a couple slices of multi grain toast. I’ve lost 22 lbs since Jan ...don’t want to loose any more. But eating like this just depresses me when I’m not seeing results. Ive got to get out of this funk.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Dllfb

I agree with drmind. Your diet is too severe. There is a thing called muscle wasting which comes from not eating properly and is also part of CKD end stage. I think your diet might add to that. There is a fine line and it is difficult. But you should really work with a dietician. You do not have much protein listed there. And I wonder what is your potassium and phosphorous levels? This issue of finding the right balance is why I am working with a Functional Medicine Doctor and she called the dietician I am working with to coordinate. I have not had my revisit yet so I do not know what they figured out. The body is a tricky mechanical device and throw one bad thing in to the mix that it doesn't like and it will break down. Not enough fuel, it will break down. I think part of why your numbers are not so good is you are not eating a nutritionally balanced diet. It is definitely why you are losing weight. Also, not enough calories might be adding to your funk. I too would be depressed is all I was eating is what you are. Please see a dietician.

Skeptix profile image
Skeptix in reply to Dllfb

Do you track what you eat? I use the Cronometer app. It's free and has a remarkably comprehensive database of foods.

You just log what you eat, whether foods straight from the database or recipes you've built up in the app .. and it'll spit out all you need to know by way of nutrients, calories being consumed, protein, etc, etc.

where do you get this app?

App store/website. I have it on my phone and on PC. Its handy - you'll find your diet isn't as varied as you think so adding things as you eat them a quick thing to do.

Your diet seems so severe to me. Was it recommended by a dietitian? If so, you need a second opinion ASAP. Please keep us posted. Best

Dllfb profile image
Dllfb in reply to drmind

I went to a dietician in Jan. I’ve lost 22 lbs since. Basically plant based or 2.5 oz of chicken 2 or 2 x weekly. 3 cups of veggies or fruit daily. No dairy etc. My problem was after 3 months my cholesterol went up to 2.6...never had issues before. So dr suggested cutting my 2 pieces of daily white bread down to 1 piece of multi grain. Because my numbers were ok he said I could add more fruits and veggies. Now my potassium has gone up....not that I was eating much more fruits n veggies..,maybe 5 cups. My gfr went from 77 —- 3 months ago to 67 now.

drmind profile image
drmind in reply to Dllfb

Its difficult to understand how you cholesterol went up on the diet you described. You need to get some second opinions as it seems to me that 3 cups of vegetables or fruit and one piece of bread on a daily basis is inappropriate. I sense you feel the same way, but you're not taking control of your own health. Not sure where you live, but get to a different health care team.

Dllfb profile image
Dllfb in reply to drmind

I have taken as much control as I can. I fought a year to get my dr to refer me to a nephrologist and when he did he relayed on the requisition sent that I was not a priority case so I’ve been waiting for an appointment with one since Jan. I have one finally, which unfortunately will be a phone call, next week. I stopped going to my dr shortly after when he refused to give me any suggestions as to how to stop my rapid gfr decline and said all I could do is pray. When I found out there were diets that could help and wanted bloodwork every three months so I could eat to labs he refused and wait 7 months for the nephrologist to do those. I went to a walk in clinic because I’ve applied to 3 other drs but have not been called by any. There is a shortage of drs in my area. Ive been dealing with the walk in clinic drs. I hired a dietician and went to a homeopath to get help as well, while I waited the 7 months for the nephrologist appointment. I’ve joined a few kd groups on fb and been reading so much about it...so please don’t judge me and insinuate that I have not taken control of my health. I have followed the diet and when I’ve seen stuff I don’t like I ask questions....to try to figure things out. The dr said the potassium level could be a mistake in lab work....that was his reply..and to wait for the almighty nephro appointment and ask him...So that’s why I came here to ask to see what others think....I’m doing all I can and do believe I’m taking great concern about my health!

drmind profile image
drmind in reply to Dllfb

Thank you for clarifying your position with your existing medical treatment personnel. It seems as if youve done everything possible given what you have to work with. I am hoping and praying that you can connect soon with some compassionate medical help who can offer you some sound advice and treatment.

I guess I forget how fortunate I am living in a popular USA location where changing my medical team just takes a few phone calls and some research. And, If I want, I can get labs every four or every six weeks.

Even though a GFR of 67 seems wonderful to me given my GFR of 31, we all know that ANY drop in our GFR or creatinine increase is an anxiety provoking event for most of us. So your going from 77 to 67 has to have caused major concern and especially if no one was providing proper information.

In any event, all I can say is best of luck with the nephrologist. And, it may help to remember that these doctors given how scarce they are in your area are probably dealing with patients who have much lower GFR, i.e., 15 to 30. Hopefully, however, he/she can offer some sound advice on diet and life style changes so you can slow any progression.

We care. I care. Please let us know how things are going.

Dllfb profile image
Dllfb in reply to drmind

Thank you Dr Mind...Yes...but in the last couple of years my gfr went from 85 to 54...that’s what started me on this worrisome quest...the numbers written in my original post were those starting with my start of the supposed renal friendly diet this past Jan. when my gfr result went down to 54.

drmind profile image
drmind in reply to Dllfb

It's so difficult to deal with these numbers when you dont have the support of your medical team. I like so many on this forum was testing out at CKD levels for at least 3 to 4 years before my primary doctor said "oh, do you know you have kidney problems ?" Wasnt he supposed to tell me??? I was at GFR 35 then and after a dental infection and antibiotics, it went to 24 in a month. To make a long story short and finding a new absolutely great nephrologist after the first one failed me, I'm finally back trying to recover via good hydration, a vegetarian diet (not vegan), some exercise, and lots of friendly support from others. I'm back to GFR 32. Isnt it amazing how a few numbers in the right direction can calm our anxiety. I went thru a lot of confusion about diet and still experience some. Anyway what's helped me most was finding a caring and involved nephrologist and going with my gut with diet and not going totally vegan. So far, so good. All the dietitians Ive met with so far offered totally vegan diets and they weren't for me. I had to get to a point in my journey where I said this isnt right for me. But, thanks.

I wish only the best for you. I want to hear that you got some good advice and lots of reassurances. I know that you got this.

novemberlady1 profile image
novemberlady1 in reply to Dllfb

May I ask where are you that you have no access to doctors and have to wait so long and what Dr would tell you just to pray?

Dllfb profile image
Dllfb in reply to novemberlady1

In Ontario Canada,,,had my nephrologist appointment after waiting 7 months. I was called a couple days before and told it would be a phone call. After speaking 10 minutes this specialist said it was time to end the conversation. In was shocked since I barely asked 2 questions. He cut me short and said he would only have suggested for me to drink 2 litres of water daily and no added salt...he said I had done even more than he would have suggested and I maintained and even raised my gfr so to continue doing what I was doing. I asked if he could recommend a renal dietician he said no...since I was level 2-3 renal dieticians diets would be too severe for me! Really? When I asked if there was a pill that could help me protect the kidneys he said no..,could I have the binder that would help with my high potassium...he said to cut out supplements...they likely are what are making my potassium rise...what? I’m taking omega 3s, Coenzyme 10 , b12 and garlic? I was so disappointed with this so called appointment! He gave me a requisition for bloodwork to be done in 6 months and my next appointment will be in July 2022. That it 10 minute phone call. No mention of lowering protein intake, counting potassium and phosphorus intake....nothing!

novemberlady1 profile image
novemberlady1 in reply to Dllfb

THAT IS SO SAD TO HEAR. MY INTERNAL MED DR NEVER TOLD ME ANYTHING ABOUT MY KIDNEYS AS MY NUMBERS FELL BUT I NOTICED AND GOT AN APPOINTMENT WITH MY NEPHROLOGIST. I DID NOT HAVE TO WAIT AND SHE IS WONDERFUL AND ON TOP OF EVERYTHING. I AM LUCKY TO BE IN THE STATES. IT SOUNDS AS IF THE PERSON YOU TALKED TO DID NOT CARE ONE BIT. IT DOES SOUND LIKE YOU ARE WATCHING AND DOING THE RIGHT THINGS. GOOD LUCK TO YOU:)

Very broadly, your figures are similar to my mum's (CKD 3) with some similarities in variations too over time. Dont expect too much from nephrologist though as she had an appointment ~10 days ago and (as expected) he said all is going well. He's never been bothered about the sort of protein levels she/you have - only bloods.

I suspect he's following guidance in PDF link below e.g. monito-only if protein/creatinine ratio <100 (mum's is only 28 albeit increasing at >50% every few months!). However, we are doing what we can ourselves via diet/wellbeing.

If you want to share figures more, feel free to pm me.

nhs.uk/Livewell/Kidneyhealt...

I think too that you need a 2nd opinion from specialists. What do you normally eat through your day? And you might want to have a second look at what you eat, pay a particular attention at the ingredients list for hidden potassium. For example if you use salt substitute they are potassium-based, generally potassium chloride.

I am asking what you eat through your day because usually the stomach will excrete many times the normal amount of Potassium through your feces, my understanding is that fibers have a positive effect on this; it's not known yet whether the fibers prevent the absorption of Potassium or contribute to a greater excretion.

Another thing that can help regulate your potassium level is exercise, considering your high level make sure to be cleared by your doctor first. Potassium is generally stored within the cell and the mechanism to control that are said to be enhanced with exercise. Make sure to talk with your doctor first as high potassium is likely to have an effect on your heartbeat. If need be consider investing in a smartwatch to monitor your heart rate. I own a Garmin and I can set up an alert should my hr get too high. I believe most smartwatch support this feature. It might be something to consider, something to discuss with your doctor. It's also a great way to measure intensity, fatigue/exhaustion and (edit: detect sign of) dehydration.

And regarding your cholesterol level there are many dietary manipulation that can help .. and exercises! Once again fibers can help reduce your cholesterol, something to discuss with a dietician (a registered dietician or even better a renal dietician) on how it could be implemented. I am eating more fruits than ever but I don't think this is feasible for you, at least at the moment. There are various type of fibers supplement out there. Omega-3 can also be of some help, somehow my gut doesn't tolerate the average OTC pills very well and ended up buying fish oil instead.

Dllfb profile image
Dllfb in reply to Michael__S

Thank you Michael...yes..I’m on 1800 Omegas daily. I take 1 tblsp of flax each breakfast. I have psyllium (Metamucil) but am wary taking it regularly because I read that it can hurt the kidneys. Can someone verify this for a Cat 3 patient? The dietician told me when I was in category 3 to stick to white rice, bread and pastas. I do walk at lease 30 minutes daily. I eat no packaged stuff....and do look at ingredients if I do. Potassium is listed in Canada. Instead of eating a couple of leaves of lettuce I’d been making a salad for supper with my garden lettuce in the last couple of weeks. Using perhaps 8 leaves instead of 2...I’m thinking this caused the rise of potassium. Who knows? My cholesterol has gone down to 5.19 with my 1 slice of multigrain bread daily since 3 months ago...but now I’m in Ketosis! Since I’ve lost 20+ pounds since Jan I’m sure if I go see the dietician again she will put me on even less foods...and I can’t afford to lose more weight!

Michael__S profile image
Michael__S in reply to Dllfb

I also live in Canada and Cat 3a. I really think that you need a second opinion because it's impossible to tell what the cause is. Nutrition should be highly individualized and there is a significant portion of experimentation and re-adjustments that are part of the process. We all got different metabolism and will react differently with foods. A good RD should understand that. Also make sure that you are really dealing with a registered dietician (they can provide medical advice on how to better manage your health issues with food) and not an ordinary dietician. A renal dietician would be even better but for me getting a hold of a nephrologist is quite a slow process (expected wait time 7-8 months) and from there I should have access to a renal dietician. Perhaps this is different in your province. Your health issues is more severe than mine. Ask for a referral if you have not spoken with a Renal Dietician yet.

It appear that you are receiving nutritional directives that are putting you in a state of ketosis and to the best of my knowledge (I could still be wrong) keto diet is not something that a doctor or RD can prescribe, Renal and Registered dietician are (edit: bound) to follow a science-based approach which shall be in line with the recommendation from the Institute of Medicine minus all recommendation from the NKF for managing kidney disease. Which AFAIK is mostly what your recommendation should look like. Have a look here. If your directives/guidelines differ you should ask and know why (e.g. I need to eat less of this due to my high potassium level). It will also help you to be in control of your health and work along with your RD and health team. kidney.org/professionals/gu... (edit: and also this one kidney.org/category/diet-nu... )

It's absolutely crucial that you have a 2-way communication with your RD. That alone would warrant to get a new RD. Or it could be you. I have a good 2-way communication with mine and I misunderstood his/her guidelines at times. The goal at my stage and condition is to aim for the adequate intake (AI) for phosphorus and pretty much everything else short of limiting my protein intake. In short avoid excess. What I ended up doing was to flee phosphorus like the plague and move from eating whole grain and whole wheat bread to white bread and the likes. Few weeks later I was wondering why I was feeling like crap. It was quite subtle and progressive and it got me baffled for a while. I also experience gout flare-up like never before. Which is exactly what I told him/her and sure enough when I reviewed the email chain prior to that phone call I was told to be Phosphorus-aware and avoid large quantity but that I didn't needed to restrict myself any more than that. The ensuing discussion was enlightening to me. Yet it is still something I need to watch for, especially when I eat meat as I complete my meal with carbs that are lower in phosphorus.

With all that said, if you don't have a good communication despite trying it's possible that your personalities are not compatible. Skip the guilt and get a new one.

The protein guidelines that I was given (aim for no more than 16-20g/protein per meal) are *coincidentally* about the same restrictions that someone doing a keto diet would do, plus a few more steps to achieve ketosis. AFAIK your body will first use carbs as fuel and will use excess protein as fuel (a big no-no for CKD patient) and only when both are low enough could you reach a state of ketosis. Ketosis if not controlled and monitored can be quite dangerous. But my knowledge regarding ketosis is quite limited.

Also you could be on a "low carb" diet and/or burning fat as fuel (edit: in some proportion) without being in a state of ketosis. Most carbs are not that high in calories, one serving (1/4 cup) of steel cut oats contain 150 calories and 5g of protein. Phosphorus bioavailability (absorption) is limited but not negligible. It's also a good source of fiber and its glycemic curve is quite low (vary among individual).

If by any chance you are unsure how much and what type of carbs and fat to eat due to your health issues make sure to bring it up to your RD. Those fake Netflix documentary confused the crap out of me. I ended up reading more about the science and then realized that those "specialist" with a title were activist and/or had an agenda and stopped watching those. Yet it is still a source of confusion at times and I am not scared to have that discussion with my RD.

Have a look to this older tread titled "12 Signs You Should Fire Your Doctor". Only you know whether you should or not. Getting a 2nd opinion can also help putting things in perspectives. healthunlocked.com/nkf-ckd/...

Also regarding exercise it's hard to tell. Is your heart rate elevated when you walk, do you feel you could do more?

Have a look here kidney.org/sites/default/fi... and here kidney.org/atoz/content/exe...

Personally most of my cardiovascular activity are done walking on a treadmill with a high incline and I only do it 4 days a week (monday, tuesday, thrusday, friday) plus the casual walk and a few hikes a month. I really like walking on an incline because I can watch tv at the same time and I can also get my heart rate higher while staying low impact and it generate less fatigue. It really boosted my morale and have since restored a good part of my cardiovascular health. Plus I had found a used treadmill on the marketplace for a few hundreds dollars, it was very awkward to move. Perhaps a stationary bike or a rowing machine would suit you better.

Or even better, outside. I would like to go for a jogging but I need to bring my weight down first. Or put my kayak in the water once my hip flexors are strong enough. But I found many pluses of doing the more intense workout inside. Being on a treadmill I can train or stop my workout any time I want, for any reason I want (e.g. fatigue, indigestion). This may or may not apply to you. It also mean no excuses and no transportation time because walking on a treadmill is already boring enough as it is.

That doesn't mean that it would work for you, you need to do what you enjoy and what you can. But as you say that you are average build and weight I suspect that you could do more, I could be wrong. Strength training is also an option and it got many benefits and can complete your daily walk in many ways. Somehow I am not responding well to it but perhaps you will. Now that I have been constantly using that treadmill for over a month I am giving another try to strength training and see how it goes. It help prevent muscle loss.

Make sure to be cleared by your doctor before trying anything new.

Dllfb profile image
Dllfb in reply to Michael__S

I walk at least 30 minutes 5x weekly. I don’t usually break into a sweat doing so...but I don’t stroll either. I do lots of gardening and cut lots of grass...I’m not sedate and am always doing something!

Dllfb profile image
Dllfb in reply to Michael__S

Thanks for your time Michael and lengthily advice. I’m in Ontario...in our area there’s a dr shortage...mine was an idiot, this I realized with his poor diagnosis skills and his refusal to refer me for tests, lying to me and wrong diagnosis...and I’ve applied to 3 other drs who are the only ones accepting new patients in our town and have not heard back. So have been dealing with a walk in clinic. At least they will send me for bloodwork every three months, so I can eat according to my labs and know if this diet is or isn’t working. My gfr has gotten better but some of my other numbers have declined...never had problems b4 with any other bloodwork...before this diet...anywAy, yes, I just found out that the nephro appointment, next week, will be a phone call..so not thrilled about that! ...but besides my 3 pages of questions I have for him, I will definitely be asking for a renal dietician. Thanks again.

Michael__S profile image
Michael__S in reply to Dllfb

I'm glad to hear that you are meeting with a nephrologist soon. All my appointments so far short of pre and post op were done over the phone. Most also offer videoconference, ask about it.

FYI the dietician of Canada appear to cover renal dietician as well. dietitians.ca/Join/Network-...

You can search for a Dietician here. You can also have a look at their profile. Keyword like CKD, nephrology and electrolytes are fetching results. It appear that it is the Dietician himself/herself checking those boxes as those words are rarely listed in their profile. Happy hunting.

members.dietitians.ca/DCMem...

Dllfb profile image
Dllfb in reply to Michael__S

Oh thanks so much for that! Greatly appreciated!

Dllfb profile image
Dllfb in reply to Michael__S

Just went to check for a dietician...using your suggested key search words...unfortunately all these searches brought up no dieticians within 100kms from me...even with the option of both in person or virtual meetings. You must enter your province and postal code to regulate the search and it comes up with nobody..and 100km is the farthest option. Weird system? Unless I’m doing something wrong.

Michael__S profile image
Michael__S in reply to Dllfb

What I did was a province-wide research as below and it yielded 248 results. Selecting "In person" only gave 271 results. I had an error but when I scrolled down I could see them all. It's possible that you don't have any within 100km of your location. That would mean that you would either have to travel or do it over the phone (I've used the phone and email). It may also mean that the dietician that you saw is not an RD which might have contributed to your ordeal. Ultimately the decision is yours.

Health Concern: nephrology

Language skills: - None -

Virtual Practice: Selected

In Person consultation: Not Selected

within: 50km

Postal Code: <blank>

City: <blank>

Province: Ontario

Dllfb profile image
Dllfb in reply to Michael__S

Ok thanks again...I was filling in all the lines! I’ll try that!

Also you might be at a point where you need a potassium binder, something to discuss with your doctor and dietician. Your diet appear quite strict already, perhaps too much.

Dllfb profile image
Dllfb in reply to Michael__S

Oh yes I’m asking for a prescription for sure...I’ve got 30 tomato plants in the garden. Now that this potassium problem has popped up...I can’t go without one or two tomatoes a week! Being worried that I ate 6 lettuce leaves instead of 2 from my home grown patch is giving me stress as well...yes definitely asking for some binders!...as long as using them won’t harm or cause havoc on another part of my body!

From what I am been reading the creatinine is the key. Keep it low for a higher gfr.

Hello, I'm also on a largely vegan diet and worrying a bit about potassium. I watched a talk from the Kidney RD who said don't go too low on sodium as it effects the body's ability to excrete potassium. Might that apply to you? I agree with past posters that you should definitely get tailored dietary support.

I also think a diet shouldn't feel too punishing if you're going to need to stay on it long term. I've been cooking from Anna Jones cookbooks, and enjoying some really great vegan meals (perhaps 2-3 small pieces of cheese per week but no other dairy).

Dllfb profile image
Dllfb in reply to Twinkly_Lights

So...I do watch my salt intake...virtually no added salt in anything I make. So I have a higher level of potassium now...are you saying low sodium nay cause high potassium?

Twinkly_Lights profile image
Twinkly_Lights in reply to Dllfb

Yes, but obviously I don't know your sodium levels so it's just really an idea / speculation from a non-medical person! You'd need to consult your health practitioner. But I think it is a problem to go tooooo low with sodium, since we do need at least some. See here: uofmhealth.org/health-libra...

Dllfb profile image
Dllfb in reply to Twinkly_Lights

My bloodwork indicates that sodium level is good.

Yes, even with low creatinine, you can still have high protein. That is me.

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