24 Hour Urine Results

[carinara]

Hello everybody,

i just came home from a doctors visit. We checked my 24 hour urine a few weeks ago and today i picked up the results.

Normal range my results

Adrenalin ug/24h < 20,0 2,7

Dopamin ug/24h 190-450 276

Metanephrin ug/24h 52,0-341 570

Noradrenalin ug/24h 23,0-105 35,9

Normetanephrin ug/24h 88,0-444 177

As you can see, my Metanephrin is not within the normal range (mine was 570 and the normal range is 190-450)

Iam a little worried now, if this could indicate a pheochromocytoma?????

I had an MRT of the abdomen (incl. kidneys) 3 months ago and it was ok.

I also had an catecholamin test in november 2008 my test results back then were

NORA ADR DOPM

270.5 31.2 24.5 laying down

576.6 51.3 19.9 standing

Iam a little worried about the Metanephrine being a little higher then normal. I read somewhere that pheos can also be in other places not just around the kidneys.

I cant get in touch with my POTS doctor because he is away????

Does anybody of you know if the number indicates a pheo???

Thanks a lot

carinara

[kayjay]

Hi... sorry I don't have numbers for you but I have had 3 (or 4) positive urine tests for pheochomacytoma. But I don't have it. The supine (laying down) plasma test is much more accurate. My blood tests are negitive for pheo but high enough to be hyperadergenic pots. Sorry i cannot be more helpful but a dr at Johns hopkins told me that I definitly had a pheo ...it was just two small to be seen. He was wrong... I have Dysautonomia. Good luck to you an keep us posted. Even if you do have a pheo ...removal would cure you. I know it is scary though.

[erik]

I think they have to look at the overall pattern of symptoms as well as hunt the little bugger down visually. One thing I read about pheo's is that sometimes a certain physical pressure on the thing can trigger it to release it's catecholamines. I don't know for sure, but I suspect they also tend to sit there and release a steady stream in other cases/times... which means it looks just like H-POTS in that sense. Someone mentioned a clonodine-suppression-test recently (I think looking for pheo?) which is a trademark sign. The pheo is a hormone secreting tumor (usually benign) that doesn't listen to the body's feedback mechansims... hence skewing everything badly. So if something like clonodine doesn't do it's normal thing, it can be a clue. Clonodine would normally inhibit norepinephrine release from the sympathetic nerves... but a pheo won't listen to that signal and will keep doing it's thing, defying the expected temporary suppression.

Whether or not you have a pheo, having a condition that "looks like a pheo" might guide treatment. Avoiding just a beta blocker, opting instead for a mixed alpha & beta blockade (if you do have a pheo, using only beta blockade is considered hazardous); Considering clonodine or similar; Observing and considering more BP increases than decreases. Like the H-POTS stuff.

If your pattern is more consistently "orthostatic" then it leans more toward H-POTS and away from pheo. If it's steady or random, then pheo or mast cell trouble might look more likely. But unfortunately, even "just POTS" can cause trouble that is not always timed with "standing"... so nothing is cut & dried. There are other hormone secreting tumor possibilities as well, but they are incredibly (rare) and I think other signs would have popped up to catch someone's eye.

I suspect it's gonna take an expert or two and maybe more testing, as opposed to a clear "lab result" interpretation.

[tinkerbella]

Erik,

you are soooooooo smart. i'm being tested for the 5th time. filling the brown bucket this weekend. i've been told yes i do have one to no i don't have one. clondine : in 2 1/2 years i'm finally up to 1/2 pill am and 1 1/4 pill nightly. this med took my brain away at first, so i had to stop and start it slowly. now my bp's are either sooooooooooooooo high top/bottom # or sooooooooooooo low. all y care takers are worried about me as I'm allergic to most everything.

they believe i have mast cell of the skin but still it's geting scarey

bellamia~

[erik]

For good nighttime reading material (I always fall asleep after a paragraph or two of stuff like this):

http://theoncologist.alphamedpress.org/cgi...t/full/13/7/779

They mention that other things can elevate catecolamines... medications, depression, panic disorder, congestive heart failure. I'm pretty sure we can confidently add POTS/dysautonomia to that list, since it's right in the ballpark physiologically and by association to all of those things. (Maybe even hypoglycemia can do this???)

Then if elevated levels are found, that's when the Clonodine suppression test comes in handy... to try to distinguish from various reasons things could be elevated. To weed out a false positive. I don't see an easy chart of "how high is way high", but the elevated metanephrine (a metabolite of adrenaline, I think) might even just be regular stress and/or POTS stuff. A doc may not even see reason for any followup test here since POTS is there as a viable explanation. I am just guessing about the doctor... not trying to make any diagnosis here... that would be inappropriate!

The 2008 sitting and standing seem to be below the H-POTS cutoffs that places use too... so you might even be most likely "PD-POTS" rather than "H-POTS". This might also imply they're below "likely pheo" levels too??? I don't know. Of course, these are judgment calls to be made by proper medical folk!

[tinkerbella]

erik,

how do you read the full article? don't you have to subscribe?

bellamia~

[erik]

don't you have to subscribe?

I just hopped over to a different browser and that same link brought up the whole article for me still (and offers full PDF version too). I don't know if they give "random samples" and I'm just lucky??? I take it the whole article didn't come up for you?

[tinkerbella]

okey dokey erik, I will try but now I just decided with my nurse who just left the house that since my uncle just died this week would not be the best to do the 24 hour urine test. Plus, when I just went online for the test there were instructions what not to eat. I was never given instructions what not to eat or meds not to take was anyone else?

Just wondering???? Does anyone really know how to really give this test right, does anybody really care? lol

By the way erik, what browser do you use?

bellamia~

[kayjay]

Bella, My doc said don't worry about what you eat. I know you can read things about certain nuts etc. It is important that the container has hydrocloric acid (HCL) I know my spelling is off but my conputer is messed up and I have no cursor. Anyway you do need to put the sample in the fridge (gross I know) or on ice. Also you discard the first "sample" and that is your start time.

For me the big difference between H-Pots and pheo was moving. A tilt test early on would have have made it clear that I do not have pheo. My h-pots is just severe so Johns hopkins and NIH thought that I had pheo. Again the blood test is much more accurate.

[tinkerbella]

Bella, My doc said don't worry about what you eat. I know you can read things about certain nuts etc. It is important that the container has hydrocloric acid (HCL) I know my spelling is off but my conputer is messed up and I have no cursor. Anyway you do need to put the sample in the fridge (gross I know) or on ice. Also you discard the first "sample" and that is your start time.

For me the big difference between H-Pots and pheo was moving. A tilt test early on would have have made it clear that I do not have pheo. My h-pots is just severe so Johns hopkins and NIH thought that I had pheo. Again the blood test is much more accurate.

Hi kayjay,

I have severe H-Pots . but now the numbers are getting higher as I stand when they should be dropping or staying the same. The bottom number is climbing higher and higher also. sometimes I'm just plain old potty #'s. Now my doctors are worried, I'm not because I have had this going on for over 2 3/4 years and they have found nothing.

About the container I know the container is suppose to have HCL in it, when I have it done different places they have all had different answers. I'll go back to the lab on Monday and ask them again. This is not the right time for me to do it anyway. I want a vacation from Pots...

Funny I just had to educate my nice nurse all about what a pheo was and what the test I was having was. Talk about teaching about POTS.... But she is sooooooo nice, I just love when she comes and we laugh. She is one more angel that has entered my life. At least by having pots I have met the nicest people ever.....

Blessing all around for everyone~

Bellamia~

[tinkerbella]

kayJay,

Is the blood test the cortisol stim test? Tf it is I had that and had the worst day ever from that test and the surge it brought on later after the test was strange. After my hydration, the test was in the morning my heart rate went wacky and all out of control.

test came back normal. could have fooled me by the way I felt, but I had just started florinef, gotten a cortisone shot in the butt and this all brought my period back. How's that for ya?

LOL! we must laugh~

bellamia~

[erik]

I use Firefox (mostly)... being a geek type and all (which you might have guessed

There are also some nurses that I've been enamored of... but we may be speaking of different things here

[tinkerbella]

i finally tweaked my firefox today as I lost a lot of fun functions in gmail, like video chat, rich formatting being able to see family and friends online. so if anyone with gmail ever wants to video chat and meet online let me know.

bellamia~