how were you diagnosed?

Posted , 5 users are following.

Dealing with a pituitary issue

I know I've had to do all my own medical research

to figure it out

Can you tell me how you learned about

your diagnosis


1 like, 7 replies


7 Replies

  • Posted

    Two 24 h r urnine test. Both came back really high. I can’t tell you the last time I slept. I have food allergies as most of us have but my stomach was getting larger and larger but I was not eating gluten or dairy etc and it felt different. The waking up EVERYNIGHT AT 2 am was definetly weird heart pounding out of my chest. My go, my Hynix, and my endocrine dr’s all wrapped it up and said I was 55 going through Peri menopause it affects sleep stomach weight etc. I knew it was not that. You can wake up and have light sleeps bc of hot flashes etc. But pounding heart and same time every night nope did not believe it. I have had a pit tumor for 7 yrs. it may be the cause of my Cushings or it may be my adrenal glands. Time will tell  I guess. 
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  • Posted

    It started with weight gain, I gained 50 pounds in two years with no significant dietary change.  As well as more frequent headaches and a lump in my arm pit that was getting bigger.  I was suffering significantly from PMS too.  Went to my OBGyn.  Got everything checked out and was cleared.  Then all of the sudden my periods stopped.  Called my doctor and she told me to call her back if my period didn’t start back up in 3 months.  Well on the third, it slightly did.  Then missed it again for another 3 months.  Got it to see her again and two days after a more extensive blood test, she noticed mynprolactin level was 200ng.  Confirmed with an MRI.  Now almost a year later my prolactin level is down to 34 but since November I’ve had severe migraines and am seeing a second opinion after going to the emergency room and having an MRI done again to confirm that my adenoma did growing.  My endocrinologist ignored my pleas to see me and keeps telling me that my headaches aren’t related.  So into another dr!  Hopefully I’ll get some answers!
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    • Posted

      If I have learned nothing in my struggle is that people and Dr. DO NOT GET THIS!!

      I was a healthy active  person was in every sport going. I started gaining weight, and having numerous issues. Started getting lots of food allergies. Blood pressure issues sugar issues  etc etc. now that I am 55 they throw everything in the same basket and say it’s menapause. Weight gain,no sleep. I am CONVINCED THAT THE KEY to heart, stroke, blood pressure and diabetes  is all link to THYROID AND THE ENDOCRINE SYSTEM.  Guaranteed. They concentrated on what we eat high fat diets etc no exercise etc obesity etc. if you don’t fix the endocrine system  you will have all of the above. Obesity!! High blood pressure!! Heart. I can’t tell how my heart pounds out of my chest etc. we all must stay on this. Not to sound crazy but honestly if we don’t battle for our selves who will?


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  • Posted

    yes Kim, your totally right

    sometimes, it takes a very good specialist

    to know what to look for

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  • Posted

    Hi, to cut it short, I was attending a pms clinic as pms was bad and mentioned that I'd started having milk leaking out. I was sent for blood tests which showed my prolactin was high. I then had a Mri which showed a 6 mm growth so was put on medication. That was back in 2009 and none of the Dr's I saw acknowledged effect it had on mood and energy levels etc. Only this year a different Dr said they now recognise there is a link with mood and pituitary disorders due to recent studies carried out! I spoke to an endocrine nurse from pituitary foundation support line in 2009 and she was really understanding and said many patients she had met experienced this even when hormone levels were 'normal' while onmexication. It was so frustrating being told my mood and other symptoms were nothing to do with prolactinoma when looking online so many people go through the same thing.

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