There is Hope!!!! DO NOT GIVE UP!!!

[SassySharon]

Hello to all.  I have had two pituitary tumors.  1987 & 2005.  Both times my prolactin levels were always normal.  My last tumor was remove by an excellent neurosurgeon in Houston, TX that specializes in Only Head and Neck, with another specialty in Just Pituitary Tumors.  This doctor travels to other countries to do the tumors that other neruosurgeons will not touch.  There are many doctors that have very detailed specialties, but you have to look for them.  They are going to be in the bigger cities and sometimes you have to wait to get in, but in most cases they are fairly quick to get you in.  My first nero was one of those reluctant surgeons that wanted to take the "let's put it on the back burner" approach.  Just because your Endo or Brain Surgeon tells you to wait or it is too hard or dangerous does not mean that has to be your only option.  Sometimes they just don't feel qualified but do not tell you to find someone that is.  Ego!!!!  Please for all of you that feel hopeless do not just quit or quit looking!!!  A Tumor on the Pituitary can be life threatening or can leave you devasted with Thryoid, Adrenal, Endocrine Issues as well as risk your eye sight.  
I know these things because ironically, my mother-in-law had an undiganoised pituitary tumor that almost killed her and did cause her to loss her eyesight in her right eye completely.  We had no idea what was wrong with this healthy, vibrant woman.  Her tumor burst and she bleed out into her brain causing excrutating headache, central nervous order symptoms, frontal lobe damage, and the loss of her eye sight in her right eye.  She went undiagnosed for another 9 days, in a coma, with every doctor in a major hospital unable to have an idea what was wrong.  These were the specialist!!!! Endos, Neurologist, Neurosurgeons, Internist, MD's, Every Specialist in Our fairly Large City... I had her transferred to Houston and she was awake and had the reason within 12 hours.  This was in 2001.  

These surgeries are fairly routine to a qualified Neurosurgeon that has the experience.  My Nero also travels around training other Neuro Brain Surgeons!!  My surgery in 2005 took approx 5 hours , with a recovery time of 8 weeks.  I just had another MRI and am still clear at this time.  I have multiple endocrine issues now.  Could be because I had the second on for an extended time.  

I have the dizziness, double vision, pain over the entire body, hands and feet getting bigger, weight gain, esphogeal problems, high high blood pressure, swollen lymph nodes, dry skin, hair like straw, dry eyes,mouth,nostrils, etc etc, and I do NOT have a tumor at this time.  I tell you these things because I want you to be aware that other issues can cause these problems.  Your autoimmune system is one red flag, Hasimotos ( I have) is one of these as well a Sjogrens syndrome (possibly have).  Have your doctors check your endocrine system completly.  TSH is not a good indicator.  They did only my TSH for years and "everything looks good to start you on a small dosage to now large doses" All the while my Thryoid died.  waiting on Ultrasound to see what these growths are.  You need the whole Panel run....T4 Free, T3Free, TPO, etc....Vitamin Panels Run.  All these things can extremly affect your body and the way you feel..  If only I would have followed my surgeons advice and found a gooe neuro endocronolgist.  Maybe I wouldn't have all this pain and problems.  But There is still lots and lots of hope for me.  I am getting better and expect to have more improvements when we get my meds on board.  Until then trying to help others is my mission.  Feel free to ask me any questions.       -sass-
I actually posted this on another thread but felt the need to post as a thread so that maybe others will read it too.
I do not have the answers on Thryoid issues as I am new to that.  I am on The Thyroid Issues forum where there are many helpful people that know all about it and can help you get a handle on you labs....if you have your findings and want to post them be sure you post the reference ranges as well as your levels and list each and all of what you have had done!!!!!                 HANG IN THERE!!!!     -sass-    : )

[rumpled]

I have a very very similar story to yours. I had normal prolactin or very slightly abnormal - yet I was fully lactating out of both breasts. My tumor was discovered in 1992 and it took years of kicking and screaming as they kept saying it was PCOS, my thyroid etc. which are all problems I did/do have but I also had/have the pit issue as well. So it took until 2004 to get pituitary surgery and they found I had Cushing's and a prolactinoma. I was not cured of the Cushing's so I had my adrenals removed in 2006. Now I probably have Nelson's syndrome - my case is not clear cut since my Cushing's was caused by hyperplasia so a tumor cannot be seen but my ACTH is super high.
It has just made my quality of life super low - as you can relate.

[SassySharon]

Ironically, mine is 6.6....little high even...///TPO >1000!!!!  ////Prolactin is 7.4.  
My Prolactin was always normal even though I had galactorrhea for years and years!  
and guess what??? my new endo just ran my blahblahblah TSH again this past Friday.  And we just got thru having a new MRI scan done!  TSH was just ran Feb 18th.  He also reran FT4, but not the FT3?????Maybe he is just waiting on the ultrasound and the biopsy he feels he will be doing later.  Such a long waiting time with this guy as they just do US on Friday mornings only!?!?!  I may have to wind up making that drive to Houston again.  Really do not want to.  So limited on time right now.
   Thanks for the respond.
Hoping my story will get others to see that there are other options out there and not to give up!!!      Pituitary Tumors can reak havoc on your body and your life!!!  Seldom are there many pre symptoms..VERY Rarely are they malignant . Normally benign.        
My mission is to help others.....
PLEASE DO NOT PUT YOUR HEALTH ON THE BACK BURNER!!!        -sass-

[rumpled]

Alas, it seems docs think pit tumors are small and have no effect when the opposite is the fact.

TSH post pituitary surgery is useless - once the pit has been messed with, it is usually low. Mine is .006.

Glad you held in! Hang around and help others.