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Did a 24hr urine sample for Pheochromocytoma

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J

JJ650

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I couldn't have any of that for 72 hrs prior to the test and 24hrs during.
The coffee, chocolate and vanilla I could handle but the no fruit and tea was tough! I like an apple with some peanut butter at lunch and am a sweet iced tea junkie.

The jug that they give you to collect the sample in has some sort of acid in it. Whenever urine is added to it, it smells absolutely horrid. I have no idea what the acid is or what it's for but it sure makes the sample absolutely rancid smelling!!

In case any are wondering: Pheochromocytoma

I have been having issue with high blood pressure, high pulse rate and palpitations since ealry 20's.
Before anyone ask, I'm no fattie: 32yrs, 6'2" and 215 lbs., excellent blood work.


 
I'd never heard of that ailment before now.
They have Meds to lower your BP, heart rate, and to keep it in it's natural rhythm. I'm guessing they didn't work? Or are there more issues at stake?
Regardless, try to keep your spirits up. I suffered through 18 months of severe A-Fib/flutter and had 3 catheter ablation procedures before I was cured. Please don't give up hope 🙂
 
Originally posted by: Eric62
I'd never heard of that ailment before now.
They have Meds to lower your BP, heart rate, and to keep it in it's natural rhythm. I'm guessing they didn't work? Or are there more issues at stake?
Regardless, try to keep your spirits up. I suffered through 18 months of severe A-Fib/flutter and had 3 catheter ablation procedures before I was cured. Please don't give up hope 🙂
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I'm on Torporol XL (beta blocker) which is helping. I was on Diovan previously but it was only keeping the BP in check. The beta blockers help with the extra adrenaline.
After a while, the regular meds don't work like they should. My dosages were increasing about 10mg every 6 months.
The constant increases in the dosages didn't jive with what my BP was doing.
My father was recently diagnosed as well as my uncle, so just on the chance that I could have it (it can be passed genetically) the Doc decided on the 24hr urine sample to look for key indicators.
The tumors themselves normally don't kill, but the symptoms over time can do a fair bit of damage.
 
pheochromocytoma is my FAVORITE word. I was tested for it 3 times.

They also have something called "psuedopheochromocytoma" which is an even awesomer word

JJ, just so you know, an actual pheo is very rare. You might be diagnosed with pseudo pheo... but what that basically means is that you have the symptoms but no actual tumor near the adrenal gland. My doctor has tested thousands of people and only ever had one positive.

I used to have what you had: fast pulse, hypertension, etc. I was drugged up a lot. Changed my diet and it helped significantly, also reduced stress. Do you work out a lot? How's your diet? How fast is your pulse? Are you always tachy?
 
Originally posted by: manlymatt83
pheochromocytoma is my FAVORITE word. I was tested for it 3 times.

They also have something called "psuedopheochromocytoma" which is an even awesomer word

JJ, just so you know, an actual pheo is very rare. You might be diagnosed with pseudo pheo... but what that basically means is that you have the symptoms but no actual tumor near the adrenal gland. My doctor has tested thousands of people and only ever had one positive.

I used to have what you had: fast pulse, hypertension, etc. I was drugged up a lot. Changed my diet and it helped significantly, also reduced stress. Do you work out a lot? How's your diet? How fast is your pulse? Are you always tachy?
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It's quite possible! He's only doing this test due to my uncle and father both being confirmed with it via CT scan.

I am a bit more sedentary than what I used to be I admit, but I am no means inactive. I don't hit the gym as often as I should or could. That's how it goes when you get older, or at least that's the normal excuse. 😛

My pulse since being on Torporol has actually been somewhat normal. In fact I just took my BP (we bought a home BP thinga-ma-jig for the wife to watch her BP....pregnancy difficulties :frown🙂 and it was 138/82 with a 85 pulse rate. Before the Torporol my resting heart rate was 90 or better. While doing mild exercise I would hit 120+ in a ver short period.
I was never a lazy person physically. I went to a military college and there wasn't an opportunity to be a fatass of any sort and after school I stayed pretty active. I don't run anymore but I do hit the bike.
 
Originally posted by: JJ650
Originally posted by: Sust
I'm sure your doc hasnt heard of this since med school. Although, I was taught to think of this whenever the word pheo came up. Don't miss it.
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I have no idea. She's a young doc. She may have or may have not heard of it.
Click to expand...

I'm sure she's heard of it, but it's so ridiculously rare that I'm sure it's only in the back of her mind now that she's a real doctor facing common problems and not a student studying exotic problems.
Still, not something to miss.
 
Update:
Got a call from her today. The urine sample points to the pheochromocytoma, but that is by no means definitve (false positives, etc...).
I have an appt next weeks to see what's next.
 
No offense, but that's pretty cool.
Your doc is working up a potential pheochromocytoma on an outpatient.
You can read about a pregnant lady's pheo here and see what you might have in store for yourself.
My only warning to you is that the scans themselves wont be cheap and they should be discussed with the doc. No wait, the doc won't have exact prices for you. Talk to your insurance company about prices I guess.
Good luck :beer:
 
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