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New Message on Pituitary Chat

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From: bioresearcher
Message 7 in Discussion

This turned out long - but I battled prolactin symptoms for 20 years before I 
got a proper diagnosis and treatment so I went ahead and posted it for any new 
readers still struggling for answers and maybe dealing with arrogant 
doctors.........   I had normal periods from age 10-14.  I don't know if its 
related at all - maybe the stress involved had an affect - but at age 14 I had 
a spinal fusion and was on the operating table under anesthesia for 13 1/2 
hours followed by 3 months flat on my back in bed in a full torso brace, then 
another 8 months of physical therapy also wearing a full torso brace.  Within a 
few months of this surgery my periods went haywire, and I started having 
periods only one every 3 or 4 months.   At age 16, I was diagnosed with PCOS by 
ultrasound but the doctor never ordered blood work.  I was in and out of 
doctor's office for years (and never heard that diagnosis again).  I went a 
year and a half  with no period at all followed by 1 1/2 year of spotting every 
single day - and both were accompanied by leaky breasts.  I was in and out of 
the doctor's offices and after vaginal exams (no blood work) I was always told 
everything was fine.  I didn't really care about the period or leaky breasts 
but they were real symptoms I could point to and say "SOMETHING is wrong".  My 
other symptoms were frequent migraines, frequent sinus infections and UTI 
infections,  easy bruising and slow wound healing, chronic fatigue, always cold 
even when everyone else was hot, acne, slow gradual weight gain despite being 
very active sports wise.  The worst symptoms for me was mood swings and 
outbursts of anger that I couldn't control.     In 1992 when I was 22, I saw an 
OB GYN who thought it was pituitary and several prolactin tests came back 
slightly elevated between 43 and 55.  He ordered a CT scan which said I had a 5 
mm prolactinoma.  So he sent me to an endo who ordered another prolactin test 
and an MRI.  The prolactin test came back at 13 (normal) and the MRI was 
questionable so this endo told me to stop obsessing about my missing periods 
and he said the leaky breasts weren't abnormal even though I wasn't pregnant or 
breast feeding.  He said as long as I wasn't trying to get pregnant the missing 
periods weren't a big deal.  So I lived with sympotms for years - close to 20 
YEARS!!! and many doctors just treated me like a hypochondriac.  It was very 
frustrating and I developed a real dislike for doctors in general.  I even 
completely stopped going to them for years.   When I was 33  I hadn't had a 
real period in years and I finally went into full blown menopause symptoms 
complete with hot flashes and insomnia (I was lucky to get 2 hours of sleep a 
night) and completely unable to concentrate.  I went to a new OB GYN in the bay 
area, who took a complete history and I reluctantly told her about the 
pituitary history.  She told me it was NOT ok to leave elevated prolactin 
untreated because it could cause osteoporosis, as well as obesity and diabetes. 
 She tested my prolactin which came back at 63.  She sent me to an endo who 
ordered a whole battery of tests and an MRI.  The MRI was normal as was all the 
blood tests (including FSH and LH, so no PCOS)..............except the 
prolactin, which was 58.  I finally started on Dostinex which immediately 
dropped my prolactin to 0.8.  I had a normal period start after the 3rd dose of 
dostinex and I've had them exactly 28 days apart since.  Oh, and no more leaky 
breasts, acne, sinus or UTI infections etc   :-)    Anyway through all this 
I've learned that doctors don't always know the answers and sometimes when you 
KNOW something is wrong you have to stand up to them and MAKE them listen.  And 
if they are too arrogant to listen to you, then find another one.  

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