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New Message on Pituitary Chat

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From: Diana62
Message 6 in Discussion

Hi Beth,   My adenoma was non-secreting and I basically had no symptoms.  I was 
having vision problems that my opthamologist said was due to a retina problem.  
I wanted to make sure it wasn't something else so I asked my GP to do an MRI 
and thankfully she was very cooperative. To everyone's surprise I had a 2 to 
2.5 cm tumor.  When they did the whole batch of endocrine tests my FSH and LH 
were way off (super low) and if I had been younger and trying to have children 
the symptoms would have been obvious.  But menopause masks the symptoms of low 
LH and FSH.  They don't do anything about these hormones since I'm obviously 
not trying to conceive. Raising 3 teenage boys was enough!  The other hormone 
that was slightly elevated was the prolactin which is very common when a large 
tumor is pressing against the pituitary stem.  After surgery that went right 
back to normal.  All my other endocrine tests have been normal except this past 
one on thyroid.  I will be monitored every 4 months but because my TSH is ok 
the endo and my GP both think it is my thyroid and not the pituitary and this 
would have happened anyway.  All of the Drs are very pleased with my hormone 
outcome.  I was fortunate that Dr. Heaney, top endo at UCLA at the time, was 
speaking at the first support group meeting that we went to.  I had my lab 
tests and he was very nice to give me a "freebee" opinion about them.  Then I 
went to the Kaiser endo and everything she said agreed with him so I felt 
pretty good about her.  I had the UCLA endo while in the hospital and followed 
up with my Kaiser endo a few weeks after I got home. Since I did not have 
hormone problems before surgery and they expected them to be basically ok after 
it seemed ok to follow up with the Kaiser endo and not a neuro endo or go back 
to the top guy at UCLA.  Also, I got another personal review with Dr. Cohan 
(endo that works with Dr. Kelly) at another support meeting.  Sorry this is so 
long, just want to cover it all.  It doesn't surprise me that Dr. Kelly would 
talk to you.  He IS a NICE person and seems to care about his patients.  I know 
he is passionate about his work and is doing a lot of research, speaks at 
conventions, etc.  He was the director of the neuro-endocrine center at UCLA 
for years and therefore taught neurosurgeons. Yes, we paid for the hospital and 
the surgeon "out of pocket".  But as I said a lot of the testing was done at 
Kaiser.  Again, the support group was so helpful and another person gave us 
info on who to see, how to go about it all and how to ask for discounts, things 
we would have never known on our own.  Interesting I think, after surgery, my 
GP said she was so glad I had a GOOD surgery and that I had made the RIGHT 
decision.  She said it 3 times that day!  If there is anything else I can help 
with let me know.  Again, Sharmyn is a great person and resource.  If you 
contact her, tell her Diana and Bob (have the grandbaby) from the support group 
referred you to her.  The support group, Dr Kelly and his staff have all been 
wonderful.  Diana

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