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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

Your Response


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 ( They have an annual educational program where adults meet from all over and get medical updates etc.God Bless and Keep you safe!