Need guidance. GFR 46 Creatinine 1.9, Neph... - Kidney Disease

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Need guidance. GFR 46 Creatinine 1.9, Nephrologist says not to worry about it, don't change diet. Check blood in 3 mos??

socalnative
socalnative

I was hoping to get some insight as I am baffled.

1st blood work showed gfr 56 crea at 1.3.

Thirty days later, bloodwork showed DROPPED GFR 47 crea went up to 1.9.

Just met with Nephrologist, Ultrasound clear, no blood or protein in urine.

Nephrologists advice:

Come back in 3 mos we will check your blood

stop taking any vitamins (I have to take calcium and vitamin D I have osteoperosis)

Only take pharma/rx vitamins?

No need for biopsy, risk outweighs advantage

Not worried that my historically low blood pressure is now at 141/88 being a problem? I am typically 105/60.

No need to change anything in my diet.

Has anyone out there ever experienced this? I am completely baffled.

Thank you in advance for listening.

37 Replies
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Bassetmommer
BassetmommerNKF Ambassador

The drop in your GFR and higher creatinine may not be significant as you may have been dehydrated when you went to have your test.....but having said that, I too would be concerned as that is a pretty big change. Having the test done again will show a pattern, and that is why the nephrologist may be waiting. Try adding more water to your day and follow exactly what the doctor said to do. Good luck.

Thank you for your reply, very much appreciated.

I am a huge water drinker, about 3 liters a day, that's all I drink.

Bassetmommer
BassetmommerNKF Ambassador in reply to socalnative

Well, I guess you are not dehydrated.... which is a good thing. Let us know what you find out and you will be in our thoughts.

I will definitely keep folks posted. thank you

Make sure you get hard copies of all of your labs and keep a chart so that you can see any trends for concern. Also, you might want to ask your nephrologist for a referral to a Renal Dietitian and bring your lab results with you. They will help you design a kidney-friendly meal plan based on your needs and lab results and also include any other health conditions you may have, ie, hypertension, diabetes, etc. Not all labels show all things you need to be concerned about like. protein, potassium, phosphorous, calcium, and sodium. All of those can bring down your GFR. Also, any medications you take may have an adverse effect on CKD. I use drugs.com to check each prescribed medication before I have any physician fill the script. Be sure to inform all the specialists you see that you are currently in Stage 3 of CKD and it would be a good idea to remind them during each visit. They see a lot of patients and to need to be reminded. Best of luck.

Hi Mr. Kidney, thank you for your email . . . I am so new at this that I didn't even know there was a place to go to check for rx, that's super critical. I will look at drugs.com

Quite unfortunately (and very sad) the Nephrologist I saw (second visit yesterday) flat out told me that I didn't need to see their nutritionist (which I made an appt with to see on the 16th), she said there was no reason to do so. A week ago she wanted me to get a 3rd set of blood work at our meeting yesterday, and yet yesterday she decided I didn't need it?

The sum of my visit with the MD were a lot of stonewalling. I couldn't understand what the downside would be seeing her Nutritionist, in her words "you don't need to be in a renal diet". All I wanted was to be educated on how to read things (just like you said), and know what obvious things I should avoid or watch out for.

It was a very hurtful and discouraging meeting. I am not new to the medical world, I've had my share of illnesses, and I have never encountered an MD so closed minded.

I messaged her today, to recap her directives from yesterday, and my last question was "I didn't get a diagnosis, can you tell me what I have? Or is this a fluke in my bloodwork and things will go back to normal if I stop my vitamins". I was being sarcastic but also being true to the question. No response yet.

I truly appreciate your guidance. I hope I can find a nephrologist who is a little more accommodating and holistic in their views, I just need to be educated. Having just moved to MN not knowing anyone doesn't help at all. This group, just in a day, has been my biggest support.

As others have stated you need to find more receptive physicians and an RD who will listen to you. It's your health and your life, not theirs. I spent four months in MN this summer and had only minor interactions with MN medical personnel. The few that I did come in contact with were attentive and more than willing to go along with my directives and wishes. Find a different pair. You'll be happier and healthier for doing so.

I don't want to pile on but let me offer a couple of additional suggestions. Where ever you are in MN if you have a chance to get an appointment with the Nephrology team at the Mayo Clinic in Rochester you'll be pleased. It takes a while to get an appointment and is well worth the effort.

Go to the davita.com website. Look for the link to sign up for a free 90-minute Kidney Smart class in your area. It's taught my a kidney trained specialist and is informative and very helpful. Also, that website will provide you with a lot of recipes for kidney-friendly meals. None of them have to be taken at face value. Based on your lab numbers you can still make adjustments to fit your specific needs and tastes.

Also if there is a lab test that you don't understand, use labtestsonline.org to look up the specific blood or urine test for explanations and general help in understanding the test and results in easy to understand language.

Talk to your primary care physician and set up an exercise regimen you can do for indoors and outdoors year 'round.

Finally, remember it's your life and your health be assertive and ask questions and be sure you understand what you need to know about your CKD and any and all other health-related issues.

There are many more things you can do but don't get too overwhelmed by it all.

Mr. Kidney! You have so much info! I started last night with drugs.com, and that was incredible. I will check the other resources you sent today.

I did make an appt at Mayo the day I saw my first results, it's on Nov 20. They do book months in advance. I am so hoping that Mayo does have out of the box, no blinders on Nephrologists.

Thank you from my heart, your words of encouragement is very powerful.

You may want to change your doctor- get more experienced and one who can talk to patient.

For osteoporosis - Calcium and D3 alone not good - need to add Vitamin K2 ( Mk-7 ) and some minerals like boron and zinc - best is to get Bone Strengthening supplement-- that increases bone density. Drink Bone Broth or Chicken broth - 2 cups a day -

Do some strength training exercises

check on google - for How to increase bone density ? and find supplements online

socalnative
socalnative in reply to Fatbuddy

I will check google! I didn't know about the Vitamin K, that's really good info. Thank you!

Fatbuddy
Fatbuddy in reply to socalnative

if in USA-check any vitamin shop and ask for supplements for bone

or check on Amazon

I don't want to sound contrary here but before you run to the Supplement Store, check with your physicians. Some supplements may be of help for one thing and at the same time be harmful to your CKD or something else. The worst part of this is that you have to sometimes take one supplement or prescription to aid in one health issue and have it be slightly harmful to another health issue. For example, I'm on a daily low dose of aspirin (81 mg) for my heart. NSAIDs are not good for CKD. After consulting with all of my doctors, Cardiologist, PCP, Nephrologist, and Urologist it was determined that even with the heart issues I should continue with the low-dose aspirin because of the benefits to the heart issue outweighed the potential harm to my kidneys. The final decision was mine and in this case, I went with the physicians' consensus. Don't take any supplements without your doctors' approval. I take a low dose of melatonin to help with sleep issues and an adult vitamin also approved my 4/4 of my doctors, and one for my AMD approved by my retinal specialist. You have to be proactive and guard your health. There are no cures only methods to slow down the progression.

Fatbuddy
Fatbuddy in reply to Mr_Kidney

Thank you-- NO nothing Contraversial- or argumental- we all learn from each other and express opinions.

I do NOT know too much about CKD and do NIOT want to advsie much.

MY comment was for bones -

Yes- I do take many supllmenets - Doctors never advise or give good advsie to PREVENT any disease - THEY LOOSE money, and they are brainwashed by BIG PHARMA.

MY GP had recomemended 81 mg Baby Aspirin many eyars ago, I never took it, I am 73 and heart is in great shape. I suggest to have a Cardio IQ blood test done. and keep LDL and VLDL under control. I also have Calcium Score doen and ukltra sound of heart done.

Besdies - for 99;99 % peopel inw orld - what they eat is never enough -to provide all the vitamins and minerals body needs.

I spend $ 60 per months on supllments - Vitamns - A,E,C, B, Flaxseed oil, D3,

need to satrt on Turmeric and Qunol as wella s for joints and bones.

Fatbuddy
Fatbuddy in reply to Fatbuddy

Sorry-- it says serevre error - can NOT edit

I have read articles - emails - that low dose aspirin ( Bayer brand baby aspirin) recommended by many doctors- may or may not help -

Catmommy
Catmommy in reply to Fatbuddy

There also was a recent study that there's no scientific evidence that it helps. Heard it from a cardiologist on doctor radio yesterday.

amerinada
amerinada in reply to Fatbuddy

May I suggest buying a curcumin supplement instead of turmeric? It’s the active ingredient in turmeric, and is the part that provides the protective benefits .

Fatbuddy
Fatbuddy in reply to amerinada

For us - Indians - Turmeric is lot cheaper - curcumin is too expensive

amerinada
amerinada in reply to Fatbuddy

I suppose it is; here in the US, I order a 3 months supply for $70 from Smarter Nutrition in Fountain Valley, California. Dose is 2 caps a day.

Fatbuddy
Fatbuddy in reply to amerinada

I am in USA- Atlanta - Georgia- but I buy Turmeric powder from Indian grocery store - Ir comes from India - NOT as concentrated but -- 20 % of your cost -

Sorry, but I think you need a new nephrologist. Your numbers do not quite make sense. No Dr should let you have such high blood pressure with “possible” CKD. You mention this nephrologist as “closed minded”. I would prefer the expression ‘empty headed.” Quite honestly, this nephrologist has really told you very little, likely because she seems to want to do very little.

Is your BUN level raised in concert with creatinine? I have never understood why serum creatinine and only serum creatinine are used to determine GFR (along with age). Serum creatinine is a somwhat indirect measure of kidney function. If you look on the literature over the years, it seems as if nephrology is in the dark ages. People are still arguing as to what is the best way to measure kidney function using serum GFR and your age. Certain drugs CAN alter serum creatinine measurements (or secretion) without being indicative of kidney function. Yes, some drugs will hurt your kidneys, but others will just look like they are hurting your kidneys.

When I see a DIRECT measurement of kidney function, I will feel like many Drs aren’t “faking” it all. Do you have any symptoms? Kidney pain? Have you had any urine tests that indicate how severe the problem is? What I hear is “no”, and this nephrologist should be trying to tie it all together rather than to sit there on her thumbs.

Sorry that I sound cynical, but I am. I just dont see any information from this nephrologist- just like you. I take it a bit farther and see conflicting information. Waiting 3 months with no plan is not confidence instilling- so again I understand your feelings about this. Please don’t sweat it out and get some answers. I live in “nocal” - so I understand how someone from socal could be lost in the midwest. They have good Dr’s there - if you ask around, I’m sure you can find them. Good luck. I hope I hear youre doing better sooner than later.

I very much appreciate your email. I walked out of that office feeling like I'm in the twilight zone.

The GP I met here originally took my bloodwork (she also has my lab tests from the. last 5 years). She had my results 9/4. I checked my portal 9/28.....that's when I saw the lab highlighting my GFR and CRE levels. Never got a call to flag me. Met with her early Oct as planned, I asked her about the markers "oh yes, they are off, you probably need to see a specialist".

My experiences here haven't been the best to say the least. Called MAYO when I did get my results early Sept, appt was booked for Nov 20, that was my back up plan just in case my first nephrologist appt back fired.

My only symptoms are fatigue, weakness and having swiss cheese for a brain (lots of holes, memory). I started to get back aches, but it isn't on the upper flank, so I'm not counting that. High blood pressure came out of no where, never had it, that explains why I've been getting irritated so fast and can't control it. I'm a pretty chillax and positive person, that's always been my nature, all this irritability and lack of tolerance is very foreign to me.

I'm a gym rat, the last few weeks have been a struggle, 1 set of 3 body parts and I get exhausted and go home. Cardio? Forget it, 10 mins and I'm done.

On the clinical side, this doc flat out said, GFR's are not to be given much weight in the equation. With what I've read, first 2 markers are gfr and cre, then urine etc etc. BUN levels are flat, hasn't changed much.

Thank you again for your email, I don't feel like as big of a nut job.

I reached out to couple of MD friends in San Diego, to see if they know anyone I can see. Both are reaching out to colleagues.

What a ride this has been.

Were your GFR and creatinine levels high or trending higher over the last 5 years. That's what any good Dr should be looking at. The blood pressure coming in high from out of nowhere is strange. Is it reproducible? How long has it happened?

GFR shouldn't actually be given extra weight in all of this in that it really is just a measure of creatinine. Somehow MD's think that creatinine (or GFR) indicate different things. They really don't. You definitely have a "typical" GP - "things are off - you probably need to see a specialist?" These guys are so lazy. They can't do anything themselves? I guess they just look at the lab printouts and see the highlighted numbers and refer you on - as they really don't understand what to do themselves.

The Mayo is good. Can't go wrong there. They generally do not hire losers.

I guess what I don't understand is how this all came about? When did your performance at the gym drop? Did this correspond to your jump to hypertension?

There usually is a reason for everything and Dr's tend to forget that. I'm not saying you have a serious problem. I'm just saying that they haven't really looked at what is going on with you. Welcome to 21st century medicine!

I got a good chuckle from your post this morning, one would think that the questions you posted is standard questions that Nephrologists would have. It seems that way at least to me.

The decline in strength was is more noticeable this last 3 weeks, the fatigue started about a month ago, this was more obvious bec I don't lay down during the day or take a power nap (I work from home). I'm always full of energy as soon as I get up, I don't get tired until the sun sets.

The fatigue is like a roller coaster, I'll have a good 2 hours and bam, next thing I know I feel like I haven't slept in 40 hours and I get exhausted.

As far as the jump in blood pressure, I can tell you that the blood pressure was creeping up prior to me knowing anything might be wrong (prior to blood test), I say this because I my irritability factor was much more present than what I am used to. I also know that this last 10 days was worse, I can feel my heart pounding and little things that never mattered before will trigger anger (so unnecessary). If my memory serves me right, the slow decline in gym routine, the fatigue, the swiss cheese brain (many holes) started about 3 mons ago, and as coinkidink would have it, the symptoms started to walk in my front door back to back.

I called home, and was able to get through reputable Nephrologist, willing to see me as soon as next Tuesday, that was pretty fast. I was asked to fax all my results which I did yesterday. The plan right now is for them to review, have a call with me next week, and if they need me to fly out they will let me know. The Doc was willing to manage the initial consult by phone first. I felt like I won the lottery, someone actually cares. So we'll see.

I am still holding on to my appt at the Mayo for Nov 20th.

I love that term, I will be using this from now on . . . . Empty Headed!

Hi again,

As you can see from the responses on this site, people are supportive and knowledgeable about ckd. They are saying the same things as on Early CKD

This is similar to what I experienced on my first trip to my nephrologist although at the time I did have blood in my urine ( hematuria) I had no protein. My GFR at the time. My blood pressure was in normal range around 120/ 80 or less . Can't remember how as I'd never had high blood pressure so never paid attention. She was not dismissive or unkind, but did tell me she suspected IGA Nephropathy a rarer type of kidney disease, but didn't want me to make any changes, nor was it time for a biopsy. As others said, she told me it might be dehydration or a little viral something causing the drop.

I went along happily not questioning it and came back several times over the next year. Over that time, I had changed my diet on my own due to food intolerances so my GFR actually increased, but I started showing protein leaks. Still no change in diet suggested except cut back on red meat and possibly take fish oil supplements. I was already mostly drinking water, no soda etc so she didn't advise on that.

Finally my protein leaks got to a point where it was time for a biopsy and as suspected I had IGA Nephropathy. My blood pressure started rising slightly and she said to watch salt intake. She did not have any recimmendations for a renal dietician because the ones she knew of were trained in late stage kidney disease and since my potassium and phosphate levels looked fine there was no need to limit her those. Mind you, my nephrologist is one of the best In the city. She is attentive, open minded to what I have to say and very good at traditional medicine, but not trained in nutrition.

I chose to also see a holistic kidney doctor. She put me on supplements as well as gave me diet guidelines. My GFR rose to the eighties. My nephrologist was shocked and was open minded in hearing what my holistic doctor said and said to keep Up whatever I was doing. I even heard her repeat some of the things my holistic doctor said. Apparently she did a little more nutritional research after that. Even seasoned doctors continue to learn if they are open to it. Unfortunately, even though my GFR rose, my blood pressure also rose very high and I was put on Lisinopril which reduced the protein leaks and blood pressure. My holistic doctor was trying to lower it through hibiscus tea. That's why I'm for a combo traditional meds and holistic combined.

Since then, my GFR has bounced around from the sixties to hihh seventies depending on if I have a cold etc.

Our bodies are so complex and each of us has a different story of what will work. As Mr. kidney says, you can check out the free workshop from Davitand will learn some things. You may want to explore a holistic approach or wait and see. Personally, I would cut back on red meat and pork and overall meat consumption if you are a large meat eater. Eat as healthy as possible reducing sugar intake. Be careful of drinking too much water. I was drinking so much that it was apparently flushing the nutrients out of my system. Also gulping large amounts at a time is hard on the kidneys.

I also agree with the others that a second opinion is always helpful especially if you don't feel comfortable with your current nephrologist.

socalnative
socalnative in reply to Zazzel

Thank you Zazzel for a very informative email. That was very helpful. Not sure where you are located, but if you are in MN, and are willing to share your MD's info so I can have a visit that would be wonderful. I do believe and agree that Nephrologists are not as Savvy in the food consumption area, they know the first top of the pyramid on what to avoid, a RD is the best bet.

I am also a big believer in Eastern meds, I think a combo of both east and west is a better approach.

I have this feeling that my case is a little out of mainstream CKD, and that takes more work to figure out perhaps? Maybe that's why my issues were dismissed? My protein intake, fairly straight forward, chicken breast and seafood, I'm not a big meat or pork eater not because I'm watching my diet, I never liked the taste of it, nor do I like dark meat.

Blood work for the last 7 years is consistent (I have a full panel yearly), nothing high or low, everything is where it should be for someone that is healthy, blood pressure is boring always low, nothing exciting really . . . . . Until 2018. That was the surprise, there were no prior indicators or triggers.

When asked what I changed in the last year? I moved from San Diego to MN, that is the only change I made. My fish oil, muliti V, biotin, vit E, D3, calcium etc etc etc are all the same, nothing has changed. I work out, I drink water mainly (unless I go out and have wine for dinner). Like I said it's just boring. I do have a vice and that is Potato Chips, Corn chips, this has been a battle for me . . . . they love to call my name.

I only want to find a nehprologist here (MN) that can come up with a game plan and a goal, meeting with a dietician could be part of the plan, whatever it is that I need to add on to my life or the team. One that is more Holistic in their thinking and not so much with blinders on, which is very old school.

I have 2 options it feels like, wait to see a Mayo Nephrologist in November and hope that I do get someone that does think out of the box or I fly back home to San Diego and meet with a Nephrologist and a Holistic Doc . . . I feel like finding folks out in MN will be a little more difficult on my own than that of finding one in the CA.

Mayo is a phenomenal institution, that doesn't mean all the docs are the same either. That's part of the gamble.

Thank you again for listening and for your valuable input.

Morgo
Morgo in reply to Zazzel

hi Zazzel I hope you are well...

are you available if I need to ask you a few questions.

its about my gfr?

Zazzel
Zazzel in reply to Morgo

Hi Morgo,

Please contact me through the message portal with any questions. I just messaged you so it will be easier for you to answer. If you aren't familiar with it, just look to the top of your screen and click on the "chat" icon. The messages there will be private between the two of us. :)

My base line creatinine is 1.19 and if you’re around 2 then you need to drink more. The creatinine will go up from dehydration. Im drinking 4 liters a day and I’m a couple weeks away from going back to school. So my advice is to drink WAY more water

I am NOT sure--but some thing does NOT make sense--

If creatinine goes up- and drink more water it will dilute and result will be lower creatinine.

However, any one thinking about finding real cause- why creatinine goes up and try to find solution to root cause - ?

Have you thought about an osteopath ? Theyre put down but ive heard they tend toward more healthy alternatives.

Zazzel
Zazzel in reply to Betsysue2002

I agree. I've not heard negative things about them. My GP is board-certified in family medicine and also holds certifications in acupuncture, osteopathy, functional and nutritional medicine. He's fantastic. I started going to him after my Nephrologist and holistic doctor. They have all brought different views to the table, plus he can do adjustments whenever I have an ache and doesn't tell me to come back 3 more times like a chiropractor!

Totally agree. There aren't a lot to choose from where I'm at (experienced vs very very new to the field), I think culturally, Osteopaths are too new out here. I'm bummed about that.

First of all I have SLE a disease that can and will attack anything in my body. Lupus is well know to attack kidneys. This is a very different situation from yours. I don't know what your insurance covers but it might be a good idea to consult a second opinion. Its your right to do so. These are your kidneys and to take care of them is important. You have particular different issues going on. My Doctor told me the same thing not to worry about my numbers. I don't know why they do that because it's alarming when we are now kidney patients. Personally I'm going to do all that I can, for myself, and I may not be successful, to prevent any further CKD. The best to you and may God Bless you.

Hidden
Hidden

I was born with kidney disease, was on dialysis for 15, and have had two transplants. So I have some experience with kidney disease. I'm living with my second transplant now.

A dialysis patient is worth more to a doctor than a healthy kidney patient. I'm not trying to imply wrong motives on the part of your nephrologist, just stating facts.

A good diet (limited sodium and other elements that cause the kidneys to work harder and increase food that help kidneys) along with exercise is the best treatment for any stage of kidney disease. You can raise your GFR through diet and exercise. A person on dialysis is just "existing" and going through a harder time than necessary without proper diet and exercise.

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