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New Message on Pituitary Chat

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From: motlorac
Message 2 in Discussion

My growth hormone level was 4.5 which is supposedly normal based on normal 
being 1.0 - 5.0 but my IGF-1 level was 615 which is way above normal.  These 
numbers were found by special blood tests NOT glucose tests even though I am 
over 320 lbs I still do not have diabetes mellitis.  These other tests were 
ordered after a maxo-facial surgeon told me my protuding jaw and spread out 
teeth were not something he could help me with yet, if the problem is still 
active the work he needs to do has to wait until the acromegaly is stopped.  I 
was seeing my nsg group for the last 9 years do to the fact that I also have 
arnold chiari malformation 1, the nsg did that surgery may 2000.  I tried to go 
back to work but problems all flowed back the nsg office moved me to the long 
care dr in the office and had me dealing with pain dr and others. Over the 19 
years previously I've had over 30 mri or ct scans. They also didn't ask the 
right questions my feet went from size 10 to 14 over 8 years.my hands swelled 
up my forehead and cheekbones protrude more promenently.  But as soon as the gh 
and igf-1 results came back they said get ready for a pituitary tumor.  But the 
radiologist said all my mri and ct scans showed no difference over 20 years so 
my tumor might be somewhere else.  Except that as soon as they did a pituitary 
specific mri with contrast it showed up it was as small as my little fingernail 
and on the back side of my pit gland.  First surgery was Dec 2006 it wasn't 
until July 2007 that my bloodwork showed igf-1 level back above 320 tried shots 
of octreotide and sadostatin lar depot but couldn't afford it after 3 months 
plus developed a golf ball sized gall stone.  surgery done march 2008 my igf-1 
number stay above 330 so in may 2008 had second transphenoidal attempt at the 
tumor which at this time was only 2mm.  I'm now having bloodwork done to see if 
they got it all this time.  anyway during all this I have never had a glucose 
test.  The proper blood test will show it. You need gh(growth hormone) and 
igf-1(insulin like growth factor 1).  When these tests along with the Pituitary 
specific MRI with contrast was done I was having the first pituitary surgery 
within 1 month.  

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