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New Message on Pituitary Chat

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From: liltrubin
Message 2 in Discussion

I would guess your surgeon would be the one who would determine if your tumor 
should come out. I was seeing one for close to five years who would not take 
out my tumor. I went from little disability and fully function to daily 
migraines, vertigo, loss of vision to the extent where I could not drive etc. 
and my endo agreed with that surgeon that my symptoms had NOTHING to do with 
the tumor and it should not come out. I consulted another surgeon who did my 
surgery and I am about 85% better!!!!!! I would get a second option from a 
different surgeon. 

 
HUGS,
Tina


On Mon, Apr 7, 2008 at 10:37 PM, CUSHIE2X <[EMAIL PROTECTED]> wrote:


 




New Message on Pituitary Chat



Confusing Lab Results






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From: CUSHIE2X 



Hi! I previously had cushings disease caused by pituitary tumor. It took 
approximately 8 years to diagnose. Surgery was done in September of 2001. I 
started to develop the symptoms again about 6-8 months after the surgery. MRIs 
have since shown that I now have 2 tumors on my pituitary. Little change in the 
size - both are micros.


Anyway, my cortisol level has been elevated on only 3 of 8 tests, including 
saliva, urine, and blood. The salivary cortisol test is the one that usually 
catches the elevation. 24 hour urine collection has only caught it once. My 
endocrinologists (yes plural) believe that I do have cushings again because my 
ACTH level remains the same day or night. However, surgery cannot be performed 
(or any other treatment for that matter) until cortisol levels are high! I 
wonder if what is considered a "normal" level is actually too high for my 
system. Or perhaps the ACTH elevation indicates something else or something the 
drs are missing.


Has anyone else experienced this or something similar? I am in need of 
guidance. Any help would be greatly appreciated! I am at my wits' end. This has 
been going for years and years now.

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