POTS, eGFR, and kidneys

[Lily]

Can anyone here help me understand possibilities for POTS patients?

Routine bloodwork (metabolic panel) from my ADHD doctor turned up creatinine 1.05, increased from 0.8 last year (lab reference range max is 1.0), and eGFR of 64, decreased from 91 last year. 

Labcorp sent me the lab report directly, so I have to wait for an appointment to talk to the docs about this.  Plus between the time the lab work was prescribed and when I remembered to do it, the neurologist who ordered it moved to a new practice.  He wouldn't have seen it anyway.  I made appointments with neurologist and cardiologist to discuss meds and kidneys, and I'm considering consulting my GP for a urine protein test.

I've been reading about kidneys as I wait for my doctors appointments to arrive (in 2 wks), and most of the info is about normal folks or diabetics.  I haven't found as much as I wanted to about POTS patients yet.  Maybe it is in the research journals.  But maybe you folks here can help me out.

Here are the questions that I can't find answers to yet:

1. Is there any way other than kidney disease that eGFR can decrease by 27 units in 14 months?

2. Can Florinef cause kidney problems?

3. Or not doing salt + water correctly while in Florinef?

4. Can POTS cause kidney disease?

5. What would happen if one did not have low blood volume yet took Florinef? My doc does not like to do many tests, but go from patient experiences instead.

Any help educating myself on this issue will be greatly appreciated.  Thanks for reading.

[yogini]

POTS dysautonomia does not cause kidney disease.  Florinef does have some interactions with the kidneys.  I believe it is not recommended for people with kidney disease and does have potential for negative effects on the kidneys, especially if taken long term.  If you can't reach your doctor your pharmacist should know.

Only a few people with POTS have clinically low blood volume, but many are prescribed florinef because it helps with symptoms anyway. 

[firewatcher]

I have POTS and Chronic Kidney Disease. My doc at Vanderbilt AND a POTS doc in Dallas have said that POTS did not cause CKD. Your eGFR can fluctuate by that much due to dehydration, meat intake or exercise...what matters is the trend over time. I've managed to hold steady at stage 3 CKD (eGFR around 50) for 12 years by restricting my meat intake. Red meat and processed meats are particularly difficult for the kidneys to filter and hasten decline. Even under normal circumstances (like anything with POTS is normal) blood volume, blood pressure and medications (particularly NSAIDs like ibuprofen) can alter kidney function. Some medications and supplements (like GERD medications or vitamin C) can effect the test, which will show a falsely high creatinine/low eGFR because it messes with the test itself. I've never met a nephrologist that was knowledgeable about POTS...ever, so you may be in no-man's-land with this. The best thing you can do is have your kidney function monitored regularly (basic metabolic panel quarterly) and do the best to educate yourself and eat well (as if you knew you had kidney issues.) I've never been on Florinef due to my   kidney function numbers, but salt has not been restricted or a problem. Don't let a doctor talk you into thinking that this is nothing or normal, watch it yourself. I hope this helps.

[Lily]

Thank you SO VERY much!  This is exactly the kind of insider info I was hoping for.  Very helpful indeed.  It is especially good to know that the eGFR can drop that far due to dehydration.  I will pay better attention to hydration and follow up with specialists and my Primary Care doc (who I usually never have to see).

As for diet, I have read some very interesting recent research about ketogenic diets reversing kidney disease in mice.  I have been paleo/primal for 10 years now, but not ketogenic.  I have been thinking of trying it.  Maybe now is the time.  Or maybe it is good enough to come close.

For the record, I mean very low carb, lower protein, high fat.  And whole foods, not processed edible food-like substances.  And anti-inflammatory healthy fats.

[firewatcher]

This is one of those situations where one condition (likely) does not cause another, but will occur frequently with another. CKD and Migraine are far more common than POTS. From what I've read and talked about with my doctors, Migraine and CKD occur frequently together. The doctor's theory is that it is likely due to the underlying vascular issues that are common in both diseases. Either way, your kidneys are as precious as your brain and sometimes much harder to fix. There are other tests that your doctor can do (24-hour Creatinine clearance test as well as a renal ultrasound) that will give you a clearer idea of whether or not you have kidney damage. Good luck and please post results!

[Lily]

Uh oh!  I do get migraines! Fortuanately, vitamin B2 and magnesium oxide daily prevents them.  I will definitely post updates. Thanks again!

[Claire]

Fire watcher, are you not scared of having CKD? How do you cope? Thanks

[firewatcher]

Hi Claire, no, I'm not scared. I cope with it the same way I have with POTS and my other diagnoses: I research and educate myself and then do the best to take care of myself from what I've found. My POTS diagnosis came before my CKD diagnosis, but after looking back as far as I could with my labs, the CKD predated my POTS decline by several years. CKD in some cases, does not progress past stage 3 and I am hoping that mine does not. For many, it is a slow, insidious disease with no real symptoms until you get to renal failure (eGFR< 15%) when dialysis or a transplant occurs (if you are lucky.) Most people don't actually die of CKD, they die of cardiovascular complications. I keep track of all my labs and eat a mostly vegetarian diet and keep well hydrated. 

Fear is really a choice (just like fight or flight, which POTS gives you in abundance) and I choose fight.

[Lily]

I went to my primary care physician.  She agreed that a re-check after a week of careful hydrating was prudent, along with checking urine protein.  There was nothing in my urine that wasn't supposed to me there, and my creatinine and eGFR were back to where they were last year, 0.78 and 92 respectively.  So it seems that I caused a false positive by neglecting hydration.

[firewatcher]

Fantastic news!!!

 

[GinnyIckle]

Thanks, Firewatcher! 

I just got a copy of my "results normal; continue as before" blood tests and was shocked to see that the results included an eGFR of 84, "consistent with CKD stage 2." 

If hypovolemia can drag down eGFR, then there may be no kidney issues after all.

Certainly, distributional hypovolemia has been an issue lately, with my dBP hovering in the 40s. I've been limp as an overcooked GF noodle, despite boosting salt and water intake. 

The high-normal hematocrit and hemoglobin concentration do hint at low circulating blood volume. And the low-normal sodium also supports the hypothesis that, what hasn't been pooling below the waist, I've been peeing away almost as quickly as I can take it in.

Still not happy with my GP / PCP, though.

Normal, it's not.

Neither is one liver enzyme, the ALT, which has edged up again. If it stays here or rises again, they'll have to change my Sjögren's meds.

My C-reactive protein isn't normal, either. It's been worse, before Sjögren's treatment started, but a CRP of 8 is not normal. 

Really not pleased with this doctors' office. But ...

... On the other hand, they did just double my midodrine (I was at a tiny 2.5 mg, tid), which hopefully will help my poor ANS and weary vasculature to do their jobs.

Hopefully, when I go back in a month for a follow-up, things will have settled down.  Hopefully, I can get them to repeat at least the kidney testing, and add a urine test as well as the bloods.

Argh. 

But, thanks again. Good-health wishes to all!