Worried: Hello, I ordered my own blood work... - Kidney Disease

Kidney Disease
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Worried

kat208
kat208

Hello, I ordered my own blood work because I have a fear of doctors. My GFR is 78. It should be 99. My potassium level is 4.2 (range 3.5-5.0). So I guess I have stage 2 CKD. Now I'm afraid to eat potassium so for the last 3 days I have only been eating white rice, oatmeal, an occasional egg, and iceberg lettuce. I have lost 3 pounds and was normal weight to begin with. I don't have high blood pressure or diabetes. I take my blood pressure 3 times a day and it averages 95/65. Not sure what to do or how much longer before I end up on dialysis. Not even sure if I really need to avoid potassium at this point. Any advise would be appreciated.

47 Replies
oldestnewest

Hi, you cannot eliminate potassium from your intake. You definitely have to control it, along with phosphorus, protein, sodium, and calcium. You must get over your fear of physicians and make an appointment with your PCP. Explain your issues and let a medically trained professional make the diagnosis.

You'll need a few blood draws to get a handle on your GFR and creatinine, as well as other numbers. Until you get specific instructions, stay hydrated, exercise, eat healthy and avoid red meat, processed foods, and added salt until you know more.

Finally, don't worry until you know something with some degree of medical certainty.

kat208
kat208
in reply to Mr_Kidney

Thank you. Is it necessary to reduce potassium when it's right in the middle of normal range? I didn't think there were potassium restrictions in stage 2 unless blood levels are elevated. I'm just wanting to be on the safe side so I'm reducing it, but I may not need to.

Mr_Kidney
Mr_Kidney
in reply to kat208

Again, you need to see a physician see if any of your numbers are legitimate. Eating what you have been eating is not going to produce "real" numbers. You may in fact not have a problem with potassium, but then you may. The whole concept with CKD is that there is no cure. All you can do is slow the progression. In your situation, there could be a lot of reasons for your GFR to be at 78. It may be a factual number and then it might not be.

If it is real, you would be fortunate. Many of us were not made aware of having CKD until late Stage 3 or 4. I was not informed until my GFR was at 32. Once I knew what I was dealing with I obtained copies of my previous blood/urine labs and discovered I had CKD for a long, long, time before I was told. None of those physicians are part of my Care Team.

My suggestion was to eat properly, don't go crazy with any of those five minerals, and let a physician run some labs and tell you where you are. If, in fact, you are a patient with CKD with a GFR in Stage 2 you will have a lot of time to take all the appropriate steps to slow it down. There is nothing wrong with eating healthier now and still watch your intake of potassium, phosphorus, protein, sodium, and calcium.

Relax, eat normally, and see your PCP and run labs over a period of time and see where you are. You may be worrying about nothing.

kat208
kat208
in reply to Mr_Kidney

I had those tests done when I was eating normally. For some reason I'm worried anyway even though eating normal levels of potassium resulted in normal potassium levels. Now that I'm following a kidney disease diet I'm losing weight and am now underweight. Thanks for your response. I've been dealing with this fear of kidney disease for years. I know I need to see a doctor. I just don't know how to get over my fear. And I'm really sorry that you and others don't find out until later. Oh and my calcium levels are on the low side, just within range.

KidneyCoach
KidneyCoachNKF Ambassador
in reply to kat208

Why are you eating a kidney disease diet and where/who provided it and personalized it just for you? I mean you haven't yet seen a physician or confirmed CKD at all. Is there a reason for your fear of acquiring CKD or family history to cause the fear?

It appears as though your worries are controlling your actions. There is no physical reason at the moment to limit your diet, especially before actually consulting a doctor and having further testing.

Let us know.

Blessings

Bet117
Bet117NKF Ambassador
in reply to kat208

Hi Kat,

I have been reading over your posts; here are my thoughts...

To begin, fear and skepticism are very normal. Going to the doctor and waiting for the

" what and what if's " can be taunting. The words kidney disease scared me and I am sure many others on this forum.

To eliminate worry is to take care of issues and go forward.

I would put together a Health Care Team who are good listeners and willing to communicate with both yourself, each other and involve you in your treatment plan.

I agree with Mr._Kidney that the first place to start is getting a PCP who you can talk to freely and have them run labs for you, including electrolytes and take a look at the ranges that you fall under together.At that time ask about a good nephrologist who is willing to work with them and dietary suggestions. My PCP and nephrologist are both wonderful ; communicate with each other after they see me and both have given me great dietary suggestions.

In your case, bear in mind that if your potassium is dead center normal, eliminating foods with that element in them could cause the levels to drop; you will feel tired and throw your whole system off. Let the health care team work with you. They will also be able

to make suggestions as to how to increase your calcium as well as how keep as healthy as possible. If you are not comfortable with a doctor, don't hesitate to seek out another. Keep copies of your labs and what you are eating and bring them with you to the appointments.

No one was more doctor frozen as I was for many years; I feel like I am sitting on an egg waiting for it to hatch after lab test are drawn to this day; however I would rather know what is going on and obtain good and proper treatment than risk health issues that could have been avoided.

See that PCP; if you prefer a woman, find a great one. Ask friends for a referral, look into lists via your local hospital and check health grades or vitals for patient reviews of them. Know that I am walking by your side. Let me ( and all of the great folks who are in your corner here) what the outcome is. There's no reason to wonder.

"An ounce of prevention is worth a pound of cure."

Bet

kat208
kat208
in reply to Bet117

Thank you Bet for your kind words and compassion. Sitting on an egg lol. That's a really good description of how it feels waiting for test results.

AnneEG
AnneEG
in reply to kat208

I live on my own in Scotland and would love to meet up with people going thru the same thing.

Like you I'm terrified of doctors and scared of giving blood in case they find something wrong. I had 3 blood tests in August, Sept and Oct and was diagnosed with stage 3. My gp said she's not at all concerned. She wants to put me on a statin which would require 2 more blood tests but I'm so scared.

kat208
kat208
in reply to AnneEG

I'm sorry you're scared as well Anne. The fear is the worst part for me. I think your doctor is right, though. I read that 4 out of 5 people in stage 3 never progress to needing dialysis. I should find that comforting myself since I may only be in stage 2, but of course I have to worry that I'm the odd exception and will progress quickly through the stages.

AnneEG
AnneEG
in reply to kat208

You sound the same as me. The NHS site here says only 1 in 50 go on to have dialysis or transplant but it doesn't help the worry. I'm 68 and live on my own which doesn't help. My daughter lives in Dubai and refuses to come home which I find very hurtful.

AnneEG
AnneEG
in reply to kat208

She just gets so angry with me. Could we message privately as we have something in common? The majority of people on this site don't seem to show any fear.

kat208
kat208
in reply to AnneEG

Hi Ann, yes that would be nice to talk with someone in a similar-ish situation. I'm also alone but have one sister who gets very angry with me and is not supportive so I understand that as well.

Bassetmommer
BassetmommerNKF Ambassador

Kat... a few things. First of all, one lab draw does not give you a diagnosis of CKD. There are many factors which include hydration and what you did the night before the lab draw. And there are other things they look for such as creatinine and blood counts. Second, you do not say how old you are as age will give you a lower GFR number and it is natural. Third, your potassium is in the middle of the range and is quite normal. Potassium will also flex with different labs so one reading is not enough. However.... if you are not consuming enough potassium, you can run into serious issues with cramps and heart issues. And lastly, why the heck are you taking you blood pressure so much. Do you know if you take a blood pressure repeatedly can raise the readings? But why are you worried about your BP? Did a doctor tell you do do this?

All this self-inflicted diagnoses and "preventive" things you are doing is more harmful than going to the doctor and getting the care you need.... which might be to talk to someone professionally about your fears.

kat208
kat208
in reply to Bassetmommer

He Bassetmommer, thank you for your response. Many years ago I was on heavy doses of antibiotics for chronic Lyme disease and ended up seeing a nephrologist. He said I had the kidney functioning of a 70 year old lady. I believe I was about 30 at the time. I'm now 48. My low kidney functioning could have been temporary, I don't know and I didn't follow up with him because I moved out of state. Anyway, I then got on an investigational protocol for Lyme which required me to take 160 mg of Benicar a day in divided doses. I won't explain the protocol as it's quite complex but I will say that my GFR went down to 44 but the creator (mad scientist/not a doctor) of the protocol said that my kidneys were fine and that my GFR was just falsely showing low. I ended up getting off the protocol about 4 years ago and continued to avoid doctors from that point on because I didn't want them to test my kidney function. Finally the anxiety caught up with me and I ordered my own blood work. I was relieved to see that my GFR was up to 74 (on 20 mg of Benicar), but it should be 99. So basically I developed a kidney disease phobia and anything kidney related (potassium, blood pressure, etc..) is part of my phobia. The only way out of this is to see a doctor and get readings done over the course of many months. I just don't know if I can handle the anxiety of waiting for test results to come back but it's getting to the point where I might not have a choice because doing nothing and imagining the worst case scenario is also creating anxiety.

KidneyCoach
KidneyCoachNKF Ambassador
in reply to kat208

Having the anxiety of waiting for test results to come back is is certainly making yourself ill for nothing. I think most here have fear but have coping mechanisms in overcoming those fears. Your fear of being on dialysis is understandable but many live fulfilling, productive lives. I'm about to enter my 19th year on dialysis. I've traveled to 10 different states, worked 2 different jobs, volunteered for 12 different organizations over the years. A life on dialysis really is what you make of it. Dialysis is not a death sentence.

Wishing you well. Blessings

kat208
kat208
in reply to KidneyCoach

Thank you KidneyCoach, I don't know that it's really a fear of dialysis in particular. It's more a fear of not knowing what will happen, being out of control. Not knowing from one day to the next what my GFR is doing and having to give up my love of frozen meals and junk food and actually cook. It seems like such a huge effort and I really admire you for your strength and positivity. Wow, what an inspiration in regards to living for today. I mean none of us are guaranteed tomorrow anyway so why not make the most of each day? If only I could internalize that way of thinking.

Bet117
Bet117NKF Ambassador
in reply to kat208

Quite a history, Kat.

That was then and this is now. Doctor anxiety is not abnormal and can be treated. It is not simple as 1,2,3.

As prior, knowing and getting advice from someone who understands you, listens and communicates with you can make all the differences in the world.

My Aunt has Lymes Disease as well. She felt as you do for years and only saw homeopathic people. She has now found a wonderful PCP who communicates with her and is willing to add in medication as well as natural solutions to treat her case and at 75 years old, she sees a physician and is well attended to when a flare up comes.

Give the right person a try.

kat208
kat208
in reply to Bet117

Thank you. I have a doctor picked out. Just need to make an appointment. Kind of funny that I'm an RN afraid of doctors. Maybe funny isn't the right word for it, though.

Bassetmommer
BassetmommerNKF Ambassador
in reply to kat208

as a RN, you probably have seen more and know more which is adding to your fears. So...what would you tell a patient of yours who is self-diagnosing and is full of fear???

At the stage and readings you currently have, you really have all the ability to stop or at least slow any progression.

kat208
kat208
in reply to Bassetmommer

I would refer them to psych. No really, I'm sure I would tell them what everyone on here has been saying.

Bet117
Bet117NKF Ambassador
in reply to kat208

Being an RN doesn't make you exempt from being human. I am not a believer in " you should know better" or " would you tell this to your patient."

This is not about your patient, your student or your protogee; this is about YOU!

Medical personnel, like other professionals are human and have concerns like everyone else. The important thing goes back to what I said, " See someone who will communicate with you and work with you." And.....Allay your fears as you do for so many.

Kat, teachers can't tutor their own kids, dentists can't fill their own teeth. They see someone who can work with them and walk by their sides.

I am so glad that you will be seeing a PCP and getting the ball rolling.

When you come out of the office, my bet is a sigh of relief and huge breath will follow.

Remember that you are not alone!

B..

kat208
kat208
in reply to Bet117

Very wise, at the end of the day I'm a patient just like anyone else. I usually don't even mention that I'm an RN in forums because then I feel like I need to act more together somehow, and I'm not. The biggest hypochondriacs I know are medical professionals and doctors are often worse than nurses. It's like Bassetmommer said, we see more and know more. We see all of the worse case scenarios. That being said, I'm not currently working due to Lyme issues, etc... Thanks again, Bet.

Tktlady
Tktlady
in reply to kat208

I feel the same fear of everything related to kidneys !! Could we txt pls

kat208
kat208
in reply to Tktlady

Hey there. What is your diagnosis?

Chris1974
Chris1974
in reply to kat208

Gfr varies with everyone and by using different labs. Plus we have age brackets to show us what normal gfr should be. As we all age our GFR will go lower but so will our normal thresholds. Anything over 60 with everything else being normal or within normal limits is considered normal by UCSD nephrology department. Mine is in the 80s and I have checked it since 2016. While I was on Cipro for 30 days my gfr dipped down to 71. Then last month I took 3 tabs of Bactrim and my gfr went down to 56. Creatinine was 1.53. Then my next labs done 30 days later were gfr of 88 and creatinine of 1.12. I am 45 and 80-90 is considered normal for my age. Certain antibiotics will put a strain on your kidneys and can cause permanent damage if taken in high doses and for long periods of time. This includes Bactrim and Ciprofloxin. Bactrim typically puts a 25% strain on your kidneys and is temporary. You will have to do labs 30 days later and compare them to pre, on and after Bactrim. Everything should go back to normal.

Bet117
Bet117NKF Ambassador
in reply to Bassetmommer

Agreed, Bassetmommer.

You do not mention your age. That also plays a rile in ckd.

kat208
kat208
in reply to lowraind

I did mention my age.

Ah, I had not scrolled through all of the posts. I would agree with many of the posts, you do need to see a doctor.

kat208
kat208
in reply to lowraind

Yep

I understand your fear but you must stop diagnosing and treating yourself. Get to a Dr. Also when I was first diagnosed I also went to therapy to talk it out, it was a great help to me.

kat208
kat208
in reply to itzmich

Yes, thank you.

So some positive changes that I have made include.

1) Eating oatmeal with a bit of butter and brown sugar for breakfast instead of rice crispy treats.

2) Eating pasta with spaghetti sauce (since my potassium levels are normal) and extra vegetables for lunch instead of pizza and a soda.

3) Eating salmon, brown rice, and lots of veggies for dinner instead of a frozen dinner.

4)Eating fruits and popcorn (without salt) for snacks instead of more cookies and chips and soda.

Prior to freaking out the vast majority of my calories came from cookies, cakes, pies, etc...

Drinking lots of water is a challenge since I'm never thirsty but I'm drinking a lot more water and also replacing milk with water which I used to go through quickly because it pairs well with cookies, etc.. I'm going to take calcium supplements instead of drinking much milk. My vitamin D level is at 5 because I was told to restrict vitamin D while on the Lyme protocol. Even my milk was vitamin D free. I wasn't allowed to consume vitamin D from foods or go out in the sun for 4 years.

Hey there Kat. 78 is not such a bad number. Like Mr Kidney stated, see your doctor and see what he /she says. Are you drinking enough water? Are you taking any medications that can lower your GFR? There are so many other blood test results (examples: BUN / Creatinin / Potassium / Blood Pressure/ diabetes (sugar levels) / go on and on - i know its nerve racking but you can have GFR 78 until you are 120 yrs old - mine is 53 and DR told me if it stays that way until u are 100 nothing to worry about (i had 2 tests done and my creatininn stayed at 1.5 hasnt moved. The Dr has no dietary restrictions but i do work out and do not eat meat regularly, drink plenty of water (before i was only 1-2 glasses per day) and taking NSAID (Advil - 3 advil per day or so ) stopped all that and body feels better especially with losing 10 pounds or so - do what YOU can to slow it down , and dont even know if you even have a problem but MR Kidney is a wise man when it comes to this stuff. Get hydrated, rested, and retake the blood test. you may see different results :-)

kat208
kat208
in reply to apopnj01

Thank you apopnj, I am on a low dose of Benicar which can increase creatinine (lower GFR). I'm glad you're drinking more water and stopped the NSAIDS. I wish more people knew about that damage those drugs (and others) can cause to the kidneys.

Hi, Kat208

I am so sorry to read about your anxiety. I hope it will help you to know that I am in almost exactly (I don't have Lyme's) the same boat. My eGFR was at 59 in September 2018 - - doc didn't say a word. I became ill in February 2019 and my eGFR was registering at 49. At that time I had been on Spironolactone for 8 years (and Metformin since 2003). My doc kept retesting each month and it went to 55, then 51 in May so it was decided to take me off of the aldactone. Took three months but my eGFR went up to 78 and has, more or less, been sitting there since August of 2019.

In a weird twist, when I look back at the history of my eGFR (as far back as 2008), my eGFR has sat in the 60s if not right at 60 until this year! No one is interested in the why's or to try and figure out what is going on . . . and I don't know how to do that.

No one else but me seems to care. I am in Canada and have recently turned 48. The remainder of my labs seem to be just fine. I started watching what I ate and lost 35 lbs. While the salt is still in range, I noticed that it had dropped below the midpoint of the range - - so you must be careful . . . it is easy to alter your minerals and you don't want to fool with that without proper guidance. I do not have high blood pressure or diabetes (I take the metformin for PCOS . . . . which now, as it turns out, may be NCAH and not PCOS) either. My blood pressure averages 120/70.

I no longer consume red meat and my intake of potatoes has been DRASTICALLY dropped along with my consumption of tomatoes.

And my anxiety? Through the roof. I wasn't even functioning in 2019 I was so scared to move. I have two teens and a husband and I literally thought I was dying. I still do. No one seems to care that my kidney function is 20% lower than it should be for my age.

The real estate space that has been taken up in my mind over my kidneys is staggering. I totally understand where you are coming from and I wouldn't wish this worry on my worst enemy.

In short - you are not alone. And this forum, well, the people in this forum, are so kind and giving and supportive. You are in the right place to provide you with some insight and some perspective.

I am so sorry to hear of your struggle, but please know that you are not the only person who feels this way.

Be well, Kat208.

kat208
kat208
in reply to SMM62

Wow, we really do have similar stories. I'm sorry you deal with anxiety as well but at least you keep your doctor appointments. Is your GFR currently at 78 and if so is there a reason you are reducing potassium or is it just the anxiety like with me? Have you been diagnosed with stage 2 CKD? Yes, I would not wish this what I consider a phobia on anyone. I'm hoping that after I get some doctor visits and blood tests under my belt I'll start to calm down but maybe it will depend on the results. I don't know. I'm thinking if my GFR remains rather stable then that will help for sure. It's the unknowns that make it so hard.

Thank you for reaching out SMM. This really is a good forum and I'm glad I found it. I pray that we both can rise above our worries.

Best,

Kat

SMM62
SMM62
in reply to kat208

My eGFR was 78 at the beginning of this month

No reason to watch potassium, phosphorus, salt or other minerals but anxiety brought that on

Doctor said nothing. Even when eGFR slipped into stage 3

I hope we both are able to rise above our fears and love productively. My fingers are crossed for your health and well being Kat208.

Keep in touch.

WYOAnne
WYOAnneNKF Ambassador

One blood test does not CKD make. Your doctor would be looking at a trend over several months of tests. The tests would not only be looking at your GFR , but also creatinine, and urine to see if you are spilling any protein. That is why it is so important that you see a doctor. Only your doctor can put the tests in perspective and judge whether you do have CKD or not

kat208
kat208
in reply to WYOAnne

It is a good idea to be followed by someone else other than yourself.

Please see your doctor and avoid self diagnosis. It can be very scary.

kat208
kat208
in reply to Herkidney

Agreed

Hold on here. Your potassium level is in the normal range. Why would you restrict it? Having a potassium level that is too low can also be a big problem - hypokalemia is serious.

You are not a physician and should not be diagnosing or treating yourself or ordering tests.

What you are currently eating will leave you malnourished.

I know I sound harsh but as a former medical professional I saw patients self diagnose and treat themselves and DIE. It was maddening and heart rending.

The first thing you must do is treat your fear of doctors. I once had a phobic fear of dentists so I do understand fear. I came to the conclusion I had to deal with my fear or lose all my teeth.

I started by calling dentist offices and explaining my problem until I found someone willing to work with me. It wasn't easy by any means. I had to shiver and shake my way through those early appointments but that dentist was a rock star in helping me through it.

Today I can go to a dentist appointment and not think twice about it. Last October I got 4 teeth pulled

with only novocaine - no gas needed to put me out and I was fine through the entire procedure.

Desenitization works. You can do this. Find a sympathetic doctor who will work with you and stop giving in to your obsessive fear. Your life may depend on it.

kat208
kat208
in reply to zencat55

Funny you mention dentists. I make my own fillings.

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