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 replacement hormones when i was growing up, but only take 2 now. 
    Growing up this way i was often pretty sick and dealt with some other stuff that i wont go into here.  Im 31 now, and never had anyone to talk to who went through this themselves.  So if I can answer any questions or talk to anyone who is going through this please feel free.  :)
jezn55 jezn55
31-35, F
2 Responses May 13, 2012

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 treatment and constant follow up appointments from then on and throughout adolescence with a children's oncologist until I was 20/21 when I was discharged with no further follow up and was told that I had no more chance of recurring major illnesses as anyone else.
I am now 32, married with a lovely 6 year old daughter! I have felt over the past few years that I am not 100% and have been very lethargic, or lazy as the wife put it, mood swings, snappy, my daughter calls me grumpy constantly and I am known for being short tempered verbally, very quick to be argumentative without much provocation. My wife and I recently applied for life insurance, as you do, and this was granted with the information I gave them with confirmation from my GP of the above. My GP then wrote the hospital for further information of my previous treatments etc (morbid curiosity I think) to be sent a reply letter from the 'Late Effects Clinic' stating they have been trying to reach me as I may be at greater risk of further complication, contradicting what I was told years ago. I was made an appointment at my now local Late Effects Clinic and was sent for tests of Pituitary gland etc, I was told that my results would be phoned through to me within three weeks and sent away. I returned from a family trip the following week to two letters, one stating that I have an appointment arranged for the following week (urgent) and the second saying that my results were abnormal and I may benefit from treatment. I am now taking Thyroxine 100mcg and hydrocortisone 20mg daily (10,5 and 5), I am awaiting further tests for fertility and Growth Hormone Deficiency with the prospect of daily injections for life if/when the results for the latter come back. I am now left not knowing how these medications are going to effect me, do the positives outweigh the negatives or am In for a life of torment and misery? Please help...

You should hook up with the adult side of the MAGIC Foundation (magicfoundation.org). They have an annual educational program where adults meet from all over and get medical updates etc.God Bless and Keep you safe!