I Have Panhypopituitarism

A Panhypopituitarism anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Panhypopituitarism. You're not alone. 43 People

    I Guess I Am Not Alone

    As a child, I had severe headaches and got sick to my stomach allot. I went to the doctor and I was diagnosed as having a pituitary tumor. I had it surgically removed and it was benign. However, it wiped out a portion of my optic nerve and that caused blindness in one eye. A few...
    damagedg00ds damagedg00ds
    Sep 10, 2012


    I was born like any normal child, however at age two I still hadn't grown from the size of an infant to a toddler. My mother became suspicious that something was wrong, and took me to a doctor. Most doctors we went to said that there was nothing wrong. That some children are just...
    MLove1331 MLove1331
    Aug 21, 2013

    Confused/Angry & Relieved! Is That Possible?

      I have just been diagnosed with PHP and am very thrown out by it. I had a tumour removed from my optic nerve as a child (4 and a half years old) and back then kind of took it in my stride, blissfully unaware of what I was going through. I had follow up radiotherapy...
    dayatesuk dayatesuk
    1 Response Sep 5, 2013

    I Have Pan Hypo Pit

    Hi everyone,I became sick with this when I was almost 6 years old.  After a year, nwith doctors telling my parents that I was "faking" and several brushes with death, I got an MRI and the doctors discovered a tumor on my pituitary stalk, which they removed.  I took many...
    jezn55 jezn55
    31-35, F
    2 Responses May 13, 2012

    No Pituitary Doesn't Slow Me Down!

    I am a seventeen year old girl with panhypopituitarism. I was actually born without a pituitary gland. I was diagnosed when I was four and a half years old. I was the size of a two year old. I was put on synthroid, hydrocortisone, and growth hormone. When I was about 10 or 11 I...
    dolphin95 dolphin95
    18-21, F
    3 Responses May 28, 2012

    ...there Have Been Very Bizarre Dreams

    i am now on hrt and i have had very bizarre dreams.
    damagedg00ds damagedg00ds
    Aug 18, 2012

    Panhypopittuitarism caused by tumor resection

    I was diagnosed with Panhypopituitarism, 6 months ago  and have an endocrine but was looking for support/answers from people who have had this condition for a long time . Everything i find is child related, nobody really covers the adults.  I still have a few questions on life...
    juliejo1 juliejo1
    2 Responses Apr 9, 2013

    My Story

    it started when i was five years old and i was the same size as my two year old brother and my parents thought it was odd and took me to our family doctor he didnt know so he sent us to endocrinologist he ran some test and told my parents i will have to take shots til i die thats...
    melmelcouture melmelcouture
    26-30, F
    1 Response Feb 25, 2013

    Like A Walk In A Park!

    I was diagnosed with a brain tumor when I was nine.  During the operation my tumor was removed but so was the pituitary gland.  It was a tough adjustment at first but once the medicine gets worked out it is no problem at all.  I was 4 foot 4 when they diagnosed...
    kingtut204 kingtut204
    Jun 18, 2012

    God Has Blessed Me In So Many Ways

    I am a 13 year old girl who was born without a pituitary gland. I was born and still live in Helena, MT. 30 hours after I was born I had a seizure that almost killed me. I was life lifted to Great Falls, MT where doctors did a MRI which showed that I did not have a pituitary...
    Balletfreak1999 Balletfreak1999
    13-15, F
    2 Responses Jul 2, 2012

    My Infant Son Has Panhypopituitarism

    My son is 4 and a half months and he has been diagnosed with panhypopit since he was two days old. An MRI showed smaller than normal pituitary gland and possible missing stalk. He takes hydrocortizone 3x daily, and synthroid once daily. He has received three treatments of...
    kzam kzam
    10 Responses Nov 30, 2011

    Struggling With Pan Hypo

    At 19 I was told that I had a cyst on my pituitary gland and that I needed immediate brain surgery. I didn't like the doctor but was told I didn't have time to get a second opinion. The doctor not only did the surgery wrong, but severed my pituitary stem leaving me with...
    Missnikki76 Missnikki76
    Jun 16, 2013

    I always knew something wasn't right with my

    body. I really began to notice around puberty that things weren't what they were supposed to be. I'll spare you the gory details but I struggled with menstruation. I would have one for two months straight and then nothing for four months. My mother took me in to her GYNO and...
    TiffK TiffK
    36-40, F
    1 Response May 29, 2014

    I Have Pan Hypo Pituitarism

    Hello. My name is Kim. I was diagnosed with Panhypopituitarism when i was 16. But lets start from the beginning. When i was a few months old my biological father tried to kill me. My mother and father were in the navy and we were stationed in Florida at the time. I was crying and...
    LilEvilRubberDuckie LilEvilRubberDuckie
    26-30, F
    Apr 25, 2013


    I was born like any normal child, however at age two I still hadn't grown from the size of an infant to a toddler. My mother became suspicious that something was wrong, and took me to a doctor. Most doctors we went to said that there was nothing wrong. That some children are just...
    MLove1331 MLove1331
    2 Responses Aug 21, 2013

    I'm Panhypopituitary

    Hi Everybody I'm panhypopituitary. Doc said this is a rare disease.  I haven't found anybody in real life with the same condition and it made me feel so alone. I am so happy to have found other people like me here in EP. Thanks to internet!
    diyanne diyanne
    18-21, F
    4 Responses Mar 25, 2013

    Panhypopituitarism Before Birth

    Hi all I'm a Londoner (UK). I was born with Panhypopituitarism. My childhood and adolescence was a complete nightmare, as a result of huge, uncontrolled mood swings. When mother took me to the doctor, he would always say, "she's just a late developer". As a result, I was only...
    jeanette2 jeanette2
    56-60, F
    4 Responses Apr 18, 2013

    No Pituitary But I Am All Here

    Posted May 9th, 2011 at 10:28PM When I was a kid, I got sick a lot. I knew what it was like to get teased for being the smallest kid in my class, for missing tons of school. I also remember the headaches. They were so bad, my mother would stay up all night with me, doing...
    maykerr maykerr
    May 9, 2011

    No Pituitary Gland Here Either, But I'm Pretty Okay So Far?

    I'm 17 years old and found this website by chance. (What do you mean a google search isn't 'by chance'?) Anyways, I was held in the hospital for a month or so after birth until they could figure out what was wrong with me. I grew up having to take hydrocortizone, synthroid, and...
    Tren54 Tren54
    6 Responses Dec 10, 2011
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