Wanted to share this about labs.....

[Bassetmommer]

I had labs done on Tuesday. They took one draw, one arm, multiple tubes, all at the same time. I do not know why they did this, but... they ran each test twice on some of them. Probably because it was multiple doctors. Here is the strange part. Remember, same blood drawn once. Not one of the labs matched. And some were significantly off. And I cannot say which one is correct. For example, my A1c test was 5.0 and then two hours later it came in at 5.7. That's a major difference in a test. And then some of the tests they only ran once. So weird. The only one that matched was the Cystatin C GFR was exactly the same, and it was the same as it was 3 months ago. I guess my point is that a lab is not perfect. It is at best, gauge.

[jodaer]

I'm surprised the A1C was different. Unusual too for them to run the same test for the different doctors. I've had double lab requests, but they usually run it once and put both docs name on it. I guess more money doing more tests.

[Bassetmommer NKF Ambassador in reply to jodaer]

Exactly, they do one test, and post for multiple docs. Not this time and seeing the difference in the results was very unexpected.

[jodaer in reply to Bassetmommer]

It was good they did, shows us how they can vary at the same time.

[renegade70 in reply to Bassetmommer]

This has been done on me numerous times. My nephrologist has done the same tests that my PCP did 2 weeks before. There have been times where the results have varied quite a bit. I think this is common especially if the patient is on medicare. also pcp and neph are at different facilities which could also come into play.

[Darlenia in reply to renegade70]

For sure...some specialists prefer one lab over another so one assumes data can come back with some variation. Some labs have more refined equipment in certain areas than others. Specialists are aware of that and will add that particular lab to the order. I also suspect differences in figures involving things like eGFR can be expected since that figure is calculated on a number of variables and the "weight" of those variables may vary by lab. So, lab data reported from different labs won't be identical.

[Hidden in reply to renegade70]

Same here. My 6 month appts with my PCP fell within a week of my 3 month appts with my Neph and they both want full labs. When I told my PCP about having blood draws twice within a week of each other, he said to just bring a copy of my Neph labs in with me when I came for my appt. So glad!

[Bet117 NKF Ambassador]

Hi Bassetmommer, Interesting; oh, I'd make a call. Possibly have them re-done.

Only thing I can think of is that two different techs spun the labs which yielded different results.

I usually do labs for two of my metro doctors at the same time, to avoid 2 - 1.5 hour trips to their lab. Standard for me.

Results may be listed in duplicate for the same test, as tech is following to different sets of orders but are always the same.

Don't you love some of the competence?

Please let me know the outcome of this one.

B...

[Bassetmommer NKF Ambassador]

Hey Bet..... the labs were run for the surgery I am having. They were nice and ran all of the labs I had ordered. I just think its "funny" that none matched. Hope all is well with you.

[KajNybom in reply to Bassetmommer]

Ask the doctor you trust the most so you don't have to have the same surgery twice like I did.

[KajNybom]

Are you using a reputable lab like Quest? That is so strange. I have had similar problems but with different labs-but causing me to can skin cancer surgery twice because the lab results differed. They should have that regulated right?

[Beachgirl32]

yeah I seen this happen when I had labs drawn for the transplant center and my kidney doctor the same blood drawn my guess was the tubes went to different labs but I was like you why same blood drawn can show difference . You said you were having blood drawn for some surgery I just wanted to wish you well on your surgery🙏

[Hidden]

Maybe you can get Theranos to run your blood through their machine and see what kind of results you get.

[KidneyCoach NKF Ambassador]

I've read in some journals that labs can often have up to 20% errors of results. I believe this.

[HSV21]

Hi Bassetmommer - I have not been on here in a while so wish you well on your journey. You are such an inspiration! I had labs drawn like you, one stick, two doctor's orders, sent to the same lab for processing but my GFR came back different for both. When I asked about it, they said one was done 2 hours later and blood had degraded somewhat by then. I have been doing well on Ozempic, lost 25-30 pounds, keeping it off, A1c great, feeling well so hoped all with kidneys would be too, however I have gone from 21 to 14 GFR now and am quite depressed and nervous about that. Will see what doc says tomorrow, not sure I want to talk to my neph though, he just told me to have bariatric surgery to lose weight and come back in a year. That was 18 months ago. Was hoping my diet and Ozempic could keep kidneys from deteriorating. Alas, not so.

[Bassetmommer NKF Ambassador]

oh this angers me..... and you need a new neph for sure. First of all, they always blame weight. I went for bariatric surgery and was turned down. When I first saw my Neph, she put a note in my chart saying the my CKD was due to obesity... Now, over 6 years later, she removed it. She agreed that it was not the cause. it was SO not the cause. And she is now, like many more educated doctors realizing that there is more science behind weight than just stopping eating. I hope someday they come up with answers or back off on everyone being the same size and shape.

Please see if you can find a better nephrologist and I would report the old one. To tell you with a GFR of 21, to not come back for year is negligible. You should have been seeing them every four months, with lab draws.

The Ozempic is helping your kidneys as well. But to drop from 21 to 14 in a year is pretty serious. Make sure any other medications you are on are renal safe...... like no metformin. Your doctor needs to look at your other values such as creatinine (if it has gone up) and how your blood levels are doing (hemocrit and hemoglobin). My Neph does not make me panic and I have had low GFR for a while and I am still going. So hang in there.

[HSV21 in reply to Bassetmommer]

Well Bassetmommer, I tried to get another neph, my PCP agreed as well. However, no other ones (very few in Arkansas) that I have not been to already, would take me as a patient. They said to go back to my old one or wait another year to get in to see them. So reluctantly I went back to him. And three weeks after my GFR drop to 14, my new labs were even worse - 11.8! So he asked if I had contacted the transplant center? Me?? First of all, they only take doctor referrals! They would not take me off the street. Then he said any time it gets below 20 the transplant center should be initiated. So why didn't he do that back when?? The only redeeming thing he said was I could hopefully go straight to transplant and not go on dialysis at all. But that is only if they accept me, and if there is a living donor match. Otherwise I am on the wait list like everyone else and if things keep going this way, I may have to go on dialysis anyway (at least that is what I am thinking). And this neph is at the University of Arkansas, supposedly the best in Arkansas. Makes me wish I lived in Dallas.

Hope you are doing better and as always, you are my inspiration!

[Bassetmommer NKF Ambassador in reply to HSV21]

Oh boy, I would still be on the look out for a new Neph. But.. you are declining pretty fast. Would make me wonder why. Are you following a renal diet? Did you have a med check to see if everything you take is safe for CKD. Do you take anything over the counter. Include that in a medications list and go to the local pharmacy for a review. They should do it for free. Next, CALL the transplant group and explain to them what is going on. Tekk them your doctor is a nut job. AND you should be looking into getting a fistula placed NOW.... incase. Even if you get a transplant down the road. Getting an arm fistula beats having to deal with an emergency chest catheter. And arm or AV fistulas as they are called take months to heal before they can be used. NO offense, your Nephrologist is awful.

[bumblebee_tuna in reply to HSV21]

You are absolutely correct, you need to find a center and then ask your doctor for a referral. He should have let you know that when you were approaching eGFR of 20. But he didn't and expected you to know those facts somehow. You can't rely on your doctor for everything - you need to do your own research and be your own advocate. Is he waiting for you to make the call for dialysis or is something he will let you know about? You need to ask those questions.

Start looking at dialysis option - which center is best, Hemo or PD, etc. etc.

[HSV21 in reply to bumblebee_tuna]

Thank you both. I agree, but literally there are no others to try in Central Arkansas. I tried Baptist Health, they turned me down, I 've tried CHI and they are worse, which is why I quit them and went with UAMS, because at least the transplant center is there and you would think the Nephros in the department would work closely with the center. My health otherwise is fine, he felt strongly that the blood pressure meds I was on were too strong for the amount of weight I lost, and that effected the amount of blood getting to my kidneys. My PCP agrees. So he put me on a lower dose just once a day. And he took me off all other supplements like Vit B12 and Folic Acid. Labs indicate I have a huge amount of inflammation. I did see my cardiologist next, to be sure that it was ok with his team and requested they have a conference call with the nephro and PCP to make sure everyone is on the same page about my health. Well, he (nurse practitioner not my cardio) sent the nephro his notes and said if he wanted to call him he could. ARRR!! This is not Mayo Clinic or SW Medical Center I know, but you would think they could all have a 15 minute conference call??? At least they can see my medical records between the two systems. As my dietician said, this is Arkansas - healthcare is what it is here.

[Bassetmommer NKF Ambassador in reply to HSV21]

Yikes, So the next steps are for you to find a dialysis center. The reason why I say this is because they may have some pull in getting you the care you need. They might have a recommendation as to a better Neph they work with and it helps if your Neph is connected with your center. Then I would call the transplant center and start that process. Look for one near you and then if you are able to travel, one that is not in your region. Multiple listings can be really beneficial. Here is a map of the regions to help. You can only apply to one center per region.

unos.org/community/regions/

The BP meds issue you had is similar to what I went through. My Neph, who I completely trust, put me on a combination of amlodipine and hydralazine. It made me gain weigh every day. I was the heaviest I have ever been in years. AND my legs blew up and I had no edema before that. AND I felt terrible. I took myself off the hydralazine, and then my cardiologist agreed and also took me to a half dose of the amlodipine. After a while, my legs are back to no edema at all and my BP is fine, actually better. And I lost all the weight and then some. Just because one doctor tells you take a medication, doesn't mean it is the best one for you. That is why you want a team and you have to advocate for yourself. Maybe after you have been off the BP meds, your labs will improve as well.

The other suggestion is if you have MYCHART or some patient portal. Document everything you are going through. Put into writing your concerns because (if you have the portal) they have to respond to any messages within 72 hours. AND they do not like to have documentation of miss care. An example of a note was that you were told you would have a conference call with your doctors. Put that in your message and message all that were supposed to be in the call. Put in a note that you need the referral to the transplant center you choose. Put in a note that you need to see a surgeon about a fistula. Document, document.

My last suggestion is to see if the Medical Center you are associated with has a patient coordinator. Get them on board with your situation. Your GP should be fighting to get the care you need. They are you lead in you care and should be advocating on your behalf. Don't feel bad about being pushy and getting what you need. There are many doctors who love patients who keep their mouths shut because they can ignore you.

[HSV21 in reply to Bassetmommer]

Thanks Bassetmommer for all of your suggestions. We do have My Chart and I know at least my nephro uses it as he responded to my questions through it. MY PCP is keeping close tabs and I will discuss all of this with her when I go back in a couple of weeks. The transplant center did send their packet to me and I start my education class with them in October. My cardiologist said the smaller amount of Cardia would be just as good as the other drug the nephro was thinking about and I agreed to try this for a while to see how I do on it. My BP and heart rate came down immediately on the lower dose and I hope my kidneys will look better too at next labs that my PCP will do. I still feel good, with no symptoms, so I will play this through for now, but am now cognizant of what I need to look for and what questions to ask thanks to you. The nephros associated with the dialysis center closest to me are the first ones I went to who said they had never referred anyone to the transplant center and never told me I was at Stage 4 for a year. I was at 20 at that point. So you see my reluctance in dealing with them, but I know I will have to if I need dialysis. I live in rural Arkansas, Little Rock is the transplant center which is an 1-1/2 away. Thanks for the link, I will use it. If SW Medical is in another region it would be a 5 hour trip to go there, which is the closest to me.

Now lets change the topic, I am concerned with you and your journey. Are you back on the transplant list and how are you feeling, doing? Your other health issues ok? Are you still on Ozempic? Best to you!!

[Bassetmommer NKF Ambassador in reply to HSV21]

Thanks for asking. I will post something after 9/12. It is when I get the verdict from the transplant people. It has been a long summer re-testing. But so far, everything has come back IMPROVED..... which makes me really smile. But the transplant surgeon has the last call. Yes, still on a very low dose of Ozempic. Since I have lost more weight, I am weaning myself off of insulin and eventually Ozempic.

[HSV21 in reply to Bassetmommer]

Saying prayers for you!!

[Blackknight1989]

You are correct KidneyCoach but to add just a small detail to your comment individual lab reading can vary up to 30%. Obliviously not many but certain specific tests can vary that much. I did not take the time to get the specific values (such as blood sugar or creatine) that have the highest percentage but do know some individual results can vary that much if tested even 5/10 minutes apart and labs are completed independently.

[CatOnACloud]

When tests come back abnormally high or low, they will retest some of them as routine. Could account for some of this. Also, labs have different criteria for normal values. My tests are sent out to Mayo clinic as they're considered endocrine, but when they aren't there's a difference in the legend of normal values that creates some comparison and contrast. It's certainly interesting at times. You might wish to try a different lab...just to see.