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Posted: 11/15/2011 1:07:10 PM EDT
Have been sick for months. FOUO(fever unknown origin ), night sweating, sweating on mild exertion, high bp, headaches, etc. Been off eork since 10/10.


Full body s CAT scans, MRI, etc. Full blood work. 24 hour urine results point to Pheochromocytoma. Scared as hell. Awaiting the only endocrine DR. in town to decide what is next. Symptoms are worse, I feel horrible.

Any advise? Links? Vanderbilt seems to be where I am headed, but DR dragging feet and over loaded.
Link Posted: 11/15/2011 1:08:48 PM EDT
Surgical cure
Hard to diagnose, but not one to sit on after DX made. Hopefully, you get fixed soon
Link Posted: 11/15/2011 1:47:16 PM EDT
Also quite treatable. Just be sure your symptoms are controlled before surgical excision.
Link Posted: 11/15/2011 1:49:37 PM EDT
You'll need to be beta-blocked, probably alpha-blocked too ( to control blood preside, heart rate, etc).
Then workup to look for location, other sites pheo might be, etc.
Surgery will likely be helpful.
You might want to look up the rule of 10's: 10% bilateral, 10%extra-adrenal, 10% familial, etc

BTW, I'm assuming you've confirmed the diagnosis with 24hour urine collection, blood tests, etc
It's a pretty rare condition....

Hope all goes well. Get a good surgeon, one that's done alot of adrenal surgery. Worth going to a big tertiary hospital to get a surgeon with experience in this.
Link Posted: 11/15/2011 1:54:42 PM EDT
Thanks. Have been reading up on this. Yes, 24 hour catch results are off charts high. Guess inaging is next. Just kinda been over whelmed with the feeling bad, not knowing, etc. How hard is life if gland is removed?
Link Posted: 11/15/2011 5:20:08 PM EDT
Waitaminnit,
Isn't this what Seinfeld claimed to have when he was caught pissing in the parking garage?
Link Posted: 11/15/2011 5:21:49 PM EDT
Originally Posted By feudist:
Waitaminnit,
Isn't this what Seinfeld claimed to have when he was caught pissing in the parking garage?


Humm, not sure.
Link Posted: 11/15/2011 5:28:19 PM EDT
Creatine
3.1- reference. .8-2.8 g/24 hr

Norepinephrine 137 reference 15-100ncg/24 h

Calculated total 157 reference 26-121 mcg/24h

5 HIAA,urine 7.2 reference less than 6.0mg/24h

Those are some lab values. Anyone help translate them.
Link Posted: 11/15/2011 5:30:29 PM EDT
Originally Posted By zoe17:
Originally Posted By feudist:
Waitaminnit,
Isn't this what Seinfeld claimed to have when he was caught pissing in the parking garage?


Humm, not sure.


I know there was an episode of MASH where Hawkeye's dad was diagnosed with one.
Link Posted: 11/15/2011 5:30:55 PM EDT
[Last Edit: 11/15/2011 5:31:28 PM EDT by EvanWilliams]
Originally Posted By CarrierGas:
Also quite treatable. Just be sure your symptoms are controlled before surgical excision.


This.
ETA: I'm not a doctor.
Link Posted: 11/16/2011 6:51:14 AM EDT
Any advise on NIH studies? Seems they are doing research on pheo and want people like me.
Link Posted: 11/16/2011 3:38:17 PM EDT
Got reply from NIH they want more info.
Link Posted: 11/18/2011 12:27:47 PM EDT
Anyone know what a high PGE2 level in urine could mean. The only endo dr here will not get back to me. I am off work and the clock is ticking for my FMLA, my job and income.

Anyone know? No binding advise just wondering if i should self refer to Vanderbilt.
Link Posted: 11/19/2011 5:08:33 PM EDT
Saliva swab testing Monday. Really scary as tests pointing towards cancer.
Link Posted: 11/19/2011 5:34:08 PM EDT
[Last Edit: 11/19/2011 5:42:12 PM EDT by molar]
Originally Posted By zoe17:
Anyone know what a high PGE2 level in urine could mean. The only endo dr here will not get back to me. I am off work and the clock is ticking for my FMLA, my job and income.

Anyone know? No binding advise just wondering if i should self refer to Vanderbilt.


Not a medical doctor, but sounds like elevated prostaglandin E2 levels, which IIRC is a marker of inflammation and would be expected if you have an adrenal tumor. Someone like the grey man will be along shortly to clarify for you.

I would feel comfortable going to Vandy.

ETA: Aparantly, urinary excretion of PGE2 is common with adrenal tumors http://www.eje-online.org/content/150/3/345.abstract
Link Posted: 11/19/2011 5:55:32 PM EDT
Originally Posted By molar:
Originally Posted By zoe17:
Anyone know what a high PGE2 level in urine could mean. The only endo dr here will not get back to me. I am off work and the clock is ticking for my FMLA, my job and income.

Anyone know? No binding advise just wondering if i should self refer to Vanderbilt.


Not a medical doctor, but sounds like elevated prostaglandin E2 levels, which IIRC is a marker of inflammation and would be expected if you have an adrenal tumor. Someone like the grey man will be along shortly to clarify for you.

I would feel comfortable going to Vandy.

ETA: Aparantly, urinary excretion of PGE2 is common with adrenal tumors http://www.eje-online.org/content/150/3/345.abstract[/quote

Thanks any info is good. Life is turned a bit crazy.
Link Posted: 11/19/2011 6:30:07 PM EDT
Remember a "tumer" does not necessarily mean cancer, there are plenty of other types of "benign" tumors. Imaging will tell you a lot but if it was me I would get my ass to Vandy for the answers.

Good luck and let us know how things go.
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