I Might Have A Clue In My Pots Problem

[sue1234]

Okay. Since day one of my POTS(4 years) I have told my doctors I felt dehydrated. Over the years they have done a ton of tests and I am supposedly normal. Once I had a low aldosterone and twice a low serum ADH, but with no accompanying urine testing.

Last month I was in the hospital for three days doing a 72-hour fast to check for an insulinoma, as I have fought low blood sugar for many years, but it's been worse in the last year. Anyway, I was getting 3L/24 hours of normal saline, which is a good amount, plus whatever I cared to drink in water or calorie-free drinks. I did drink some by mouth, but not a bunch, as I was off/on nauseated.

So, I had to pee in a "nun's cap" in the toilet so they could measure output and I was peeing around every two hours. My urine stayed medium to dark yellow the whole time, even though my input was probably around 3 1/2 liters.

I felt AWFUL by the time I was ready to leave, feeling weak and my heartrate going from the 90s to 130s just getting up to the toilet! It took me a full two weeks to get back to not feeling weak.

So, yesterday I started a 24-hour urine to check for cortisol, catecholamines, and for carcinoid. I drank my usual variety of fluids that probably amount to 3/4 of a gallon. I had to pee in a cup to dump in the jug and my urine stayed medium to darkish yellow again. Then, I peed in the middle of the night and then again first thing this morning. The first morning urine was ORANGE!

You know, normally we all urinate in the toilet where it is diluted with the toilet water, so I never realized how yellow my urine is 24 hours a day! And, no, I'm not taking any B vitamins.

My point is, my output COLOR seems like someone that is not getting enough fluid in my body, however, my output VOLUME seems excellent--volume in=volume out. When I went to my PCP after the hospital discharge weakness, he said urine color pretty much correlates with volume status. He did no testing though. He was waiting on the testing they did in the hospital, but apparently was having trouble getting those results.

ANYWAY, does anyone else notice that they have what seems like concentrated urine even though the volume is normal to alot? I know USUALLY higher amounts of urine mean dilute, and lower amount mean concentrated. But the first morning urine being orange seems alot like getting dehydrated just overnight!!

I think I am going to make an appt. with a urologist, not really to check out kidneys, but more to talk to him about what my fluid status seems to be doing and how that might relate back to my POTS issue.

Anyone else notice if their urine color screams "dehydrated", but with adequate intake/output?????

[Poohbear]

I actually have a problem that is opposite of yours. I am often dehydrated, I am on IV fluids several times a week to try to keep my fluid levels up. When I have an "autonomic crash" my urine becomes as clear as water even though we all know I am severely dehydrated. My urine will be really dark but as soon as I enter an autonomic crash the urine becomes crystal clear and then right after the autonomic crash (anywhere from 1 to 4-5 hours later) once my body starts to return to it's baseline again, the urine turns dark again. This happens even if I have an autonomic crash while I'm on IV fluids.

If I were you I would consult with both a urologist and a nephrologist to see if they have any ideas for you. I've personally found nephrologist more helpful with this type of problem. Not that they were much help but the nephrologist had a better understanding of what was actually happening in my body.

What medications, vitamins or supplements are you taking? Have you had your Creatine phosphokinase (CPK) checked during these spells?

[flop]

For kidney function and fluid balance issues you are probably better seeing a nephrologist. Urologists are the people to see if you have a problem with the actual plumbing of the kidneys / ureters / bladder / urethra like stones or narrowings.

Flop

[joy]

I would get that checked out, orange is not a good color.

[lifesaver]

I had orange urine when I had gallbladder disease---glad you are getting this checked out.

I suggest waiting until you get all your results and see the doc running those tests before seeing another doctor. Your current doc may know exactly who and what kind of doctor to refer you to and you will most likely be seen sooner.

[lieze]

I've noticed that my urine has been pretty dark and concentrated these past couple mornings too.

I am probably not drinking enough either. I think the more I drink though the fuller I feel and the less I eat so it's just a constant battle.

Good luck getting this worked out it's good that you notice things like that.

lieze

[erik]

Needing lots of water seems typical with POTS. I assumed that POTS w/high urine output implied tons of clear urine (definitely the case for me but maybe that is incorrect assumption??? If I'm getting the point correctly, you produce high-volume yet with concentrated-looking-color most of the time (and with some extreme occurrences too). That seems like a clue worth looking at to me. Maybe if you didn't have the polyuria thinning it out you'd have an extreme urine color ( http://urinecolors.com/ )?

The only thing I've personally bumped in to, reading wise, is some forms of anemia. Some forms can involve chronic excess of blood cells excreted in urine (a normal process, but done to excess in this case) which results in deeper color (and maybe some orange/red extremes too). In general, anemia can push some POTS-like symptoms too (hmm, more than a few similarities here):

http://www.ehealthmd.com/library/anemia/anm_symptoms.html

Just a thought. I would generally expect some other indicators (kidney/urine measures, etc.) to have come up in your prior testing... but who knows. My only "experience" with anemia was considering it (and tons of other things) when I was solving my own case (since the symptoms are so POTS-like and generally "nonspecific").

Besides normal vitamin effects, I've only had (much) color to my urine if I go deeply dehydrated or when I pushed my fludrocortisone dose super high. Have you ever managed to treat the polyuria?

[sue1234]

I will check into the nephrologist.

Erik--you can't imagine how many times I have told my doctor two things related to POTS: I feel dehydrated and I feel anemic. I totally understand how anemia and POTS parallel each other. I have had plenty of anemia panels to check, but all normal. Maybe there is some strange subset of anemia that has yet to be discovered or is very rare and not apparent on mainstream tests?!? It is odd how the list of symptoms for anemia could be superimposed on the list of symptoms for POTS!

Forgetting about the urine color issue, do most of you find that you don't hold on to any fluids, whether you drink normal or more than normal amounts of fluid? It's like whatever I drink goes right through me. It's like it doesn't even seem to hang around--just goes straight to my kidneys to be eliminated.

[lauralulu]

A huge resounding YES to the question above. It's my most problematic symptom, because I also have an 'overactive bladder' (spasms which mean I can only hold relatively small amounts compared to normal) AND constant thirst/feeling of dehydration.