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Old 10-16-2010, 02:41 PM   #1
Join Date: Oct 2010
Location: melbourne
Posts: 8
jamestowns HB User
Carcinoid syndrome? Please help

Hi there
Im 38 years old 186 & 77kg. I have been in great health all my life. 5 weeks ago i felt like i picked up some sort of virus - i felt tired, mild headaches, upset stomach & mild indigestion. I was ok to work so carried on. I then went on a overseas business trip & suddenly felt a lot worse on arrival. For 4 days I had diarrhea, abdominal cramps, hot & cold fever at night that would keep me up. My body felt like it was electrically charged at night & i was having headrushes that made me sit up in bed. During the day i noticed i was getting similar headrushes - maybe 4 or 5 times during the day. They would last for about 2 secs, weren't painful & there was no redness but a bit worrying. Sometimes they were brought on by eating. i went to the nearest medical centre & my blood pressure was 160/95. My normal pressure is between 125-130/75-80. Doc there just said i had some sort of virus which should pass & didnt give me anything.

On returning home i felt better. diarrhea had gone, fever gone but i still had a couple of nights where i went to bed & after about 30mins of lying there i felt my pulse pounding in my head & then would feel a surge which would go to my head. Lasted a couple of seconds. For the first two nights my body felt 'wired' - couldnt sleep.

I went to my Gp next day & my BP was 155/90. He ordered blood tests which came back ok, i did a diabetes test which was negative & did a 24hr urine test which showed slightly elevated adrenaline levels of 104 nmol. I had a CT scan on chest which showed nothing & had an ultrasound on pelvic area, bladder, lower abdomen & kidneys - again no abnormalities reported.

I began to feel much better, no abdominal issues, no hot & cold sweats at night although i did feel mild headaches now & then & also felt very mild versions of the headrushes i had experienced before. They were now happening every couple of days but i could only just feel them & they were more like just tingling in my head. My BP had come down a lot. I bought a BP Machine & have been checking it every day. BP has been ranging from 125-135 & 75-85 over the last 4 weeks with one spike of 149/90. My GP doesnt seem overly concerned but has referred me to a hypertension specialist . Generally over the last 4 weeks since i was ill ive felt good, lots of energy, appetite back but have had random feelings of tingling in my hands & these vague tingling episodes in my head.

A week ago I changed my diet as i thought maybe it was because of my lifestyle - i have been under a lot of work stress this year (no holiday yet) & eating unhealthy food - takeaways etc. I cut out yeast, gluten, alcohol & cafffeine.
I did feel some side effects of this - mild headaches & aches.
Then two days ago i started having abdominal discomfort again. Nothing major but it just got me worried - rumblings, feeling of pressure in my abdomen & a bit of diarrhea. Still got my appetite & my BP is around 128 everytime i check it but i just have this sense that all is not quite right but i cant put my finger on it. I feel the tingling in my head i get once every couple of days is linked to something going on in my abdomen. Yesteday evening i noticed a frequent need for urination that ive never had before which is not there now & today my BP dropped to 118,

These symptoms seem like they could be attributed to carcinoid syndrome. Im feeling really anxious about it.

Any advice would be much appreciated

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Old 10-18-2010, 12:51 PM   #2
Join Date: Nov 2003
Location: Centreville Va USA
Posts: 408
lilsunshine46 HB User
Re: Carcinoid syndrome? Please help

Or pheochromacytoma? was it your VMA that was elevated?Look up the symptoms of a pheo.

Old 10-21-2010, 09:36 AM   #3
Senior Member
Join Date: Apr 2004
Location: Maine
Posts: 284
SkipperH HB User
Re: Carcinoid syndrome? Please help

My medical history is a long one. I had severe diarrhea for many years with cramping. Gastro found nothing wrong. Was placed on Cholestrymine powder for years to control the D. When I was diagnosed with low thyroid and put on Synthroid the "D" slow down some but I still have now and then. I have a host of other symptoms, an Endocrinologist ordered a 5HIAA test that came back negative, but I had not had a diarrhea episode during that 24 hour urine sample. Should I push for the Chomo A test now? P.S. I just read somewhere that Peyronies disease is a uncommon symptom of carcinoid syndrome and I have that too. Thanks

Old 10-21-2010, 05:04 PM   #4
Join Date: Nov 2003
Location: Centreville Va USA
Posts: 408
lilsunshine46 HB User
Re: Carcinoid syndrome? Please help

What about your serotonin? You can still have carcinoid with negative labs, google it and you will see.

Old 10-22-2010, 03:55 AM   #5
Senior Member
Join Date: Apr 2004
Location: Maine
Posts: 284
SkipperH HB User
Re: Carcinoid syndrome? Please help

I thought the 5HIAA test was for checking Seratonin?

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