New to Group

[Guest guest]

Hi- My name is Joyce Brown. I am 38 and was diagnosed with carcinoid syndrome 8

years ago. Carcinoid is a neuroendocrione tumor syndrome...

Long story short, in 8 years of hunting for the carcinoid tumor (which can occur

anywhere in the body) as a source of the syndrome -no carcinoid tumor has ever

been found. HOWEVER, early in the diagnostic process, an adenoma was found on my

left adrenal gland. No biochemical workup was done (tunnel vision, I think, due

to the hunt for the carcinoid).

An odd turn of events caused me to start researching the ol' adrenal tumor -

and I have been learning about Conn's syndrome for the last week. I want to have

my doc test me for it, but I need to learn more about the clinical picture.

My doc's have focused on carcinoid syndrome because of the facial flushing I

have - I can't find many references that talk about facial flushing with Conn's

syndrome - but I would like to know how common that is.

I will give a cliff notes version of my medical history - am interested if any

of you with Conn's syndrome have similar symptoms, or if I am barking up the

wrong tree...

Symptoms:

Palpitations

Sinus tachycardia

Fatigue, Fatigue, Fatigue - and more fatigue!!

facial flushing

hirsutism (I have a goatee that rival's my husband's)

increased thirst

increased urination

Pre-eclampsia in pregnancy that hit like a runaway freight train and couldn't be

controlled - labile hypertension during pre-eclampsia

Symptoms are triggered by exertion, eating - especially high carb foods or foods

high in tyramine, AND by postural changes from lying down to sitting or standing

- symptoms worsen when I am sitting or standing for long periods of time. For

last 8 years haven't been able to tolerate even ,ong car trips - even with my

husband driving - jsut as a passenger, severe fatigue and mild to moderate

flushing from sitting upright for several hours. (early work-ups for orthostatic

conditions were negative - but I definitely have tachycardia when rising from a

lying down position- much improved on calcium channel blockers)

Symptoms:

Hypertension, fatigue, etc moderately controlled with sandostatin (a synthetic

version of a natural hormone somatostatin) that acts as a giant " off-switch " for

endocrine systems (and I have recently learned that it can control

hyperaldosteronism - but it doesn't control it as well as other meds and it

doesn't control it as well as it controls carcinoid syndrome).

2 months ago I started calcium channel blocker (Norvasc) to help control

exertion intolerance and exertion triggered tachycardia and hypertension -

amazing improvement in all " carcinoid symptoms " . (calcium channnel blockers

don't do a thing for carcinoid...)

I traveled 420 miles each way for Thanksgiving this year with NO fatigue. Then I

traveled a total of 1200 miles over Christmas - a three leg trip to my inlaws,

then my parents, then home - NO fatigue.

My husband and I have been amazed and shocked at this turn of events. I have

been weaning off the sandostatin - as I do every year around this time for an

octreoscan to hunt for the carcinoid tumor - I feel so good I cannot believe

it. The calcium channel blocker is controlling all my symptoms so much better

than the sandostatin - which prompted me to dig a little deeper.

So, the facial flushing is what has kept my docs lookimng for the carcinoid -

but I am beginning to think that the visible adrenal tumor may be the culprit

rather than the invisible carcinoid tumor...

Any thoughts?

I'd be especially interested in hearing from anyone who has facial flushing, or

women who have hirsutism (excess facial hair that is stiff and dark - like a

man's whiskers) or women who have had uncontrollable pre-eclampsia in pregnancy

due to hyperaldosteronism...

Thanks!

Joyce in Cinci