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I was BORN with panhypopituitarism condition
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From:
![]() ![]() Jubilone11
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I was born with panhypopituitarism, but it was not diagnoised until age of 27 because I didn't have insurance after I graduate high school and my parents didn't think I had a problem. I am blind in one eye (underdeveloped optic nerve) and I can't hear high-tones in my left ear (underdeveloped hearing). I can't really hear a whisper. At age 12 my parents took me to a bunch of doctors - I have a slight curve in my spine and I had osteoprosis. CAT scan was done at 12. My endocrinologist said that I must had some pituitary function because I was 5' tall at age 27 when diagnosed. She prescribed cortef, levoxyl, and premarin. My body doesn't produce any hormones. She did test for growth hormone levels and xrays - she said that I had 13 yearold bones but I was 27 years of age. Here is the rest of my history from my account at http://cushings.invisionzone.com/index.php?showuser=5758 Never had a period until I was diagnosed at age 27 with panhypopituitarism. My endo said I was born with panhypopituitarism (rare). No pituitary tumor, I was born with the condition. Because of my brains underdevelopment - I am unable to see in my left eye (the optic nerve didn't develop very well). I can't hear high-tones in my left ear. I can't hear a whisper. I don't have tumor, but these are all conditions because my brain did move stuff around correctly when I was in my mother's womb. My doctor said I must have had some pituitary function up until age 12 because I grew to 5' tall, she said most people don't grow, but after 12 it went away. I remember having a very bad headache when I was around 12 years old, I told my mom, but then I just remaind quiet. It hurt so bad I felt dizzy the whole time...Now that I think about it that may have been the day that my pituitary stop working. My body doesn't produce any hormones now.
In high school and college I only weighed 95-100lbs, mostly 95. Never could gain weight. I was flat chested with no butt. I had osteoporosis. From 12 - 27 Small frame body with low blood pressure and sensitive to be cold.
At 12: I had a CAT scan of body, but doctors were looking mostly at the slight curve in my back and osteoporosis and blindness in one eye. My doctors didn't inform my parents that I might have some problems with my pituitary...Or they just didn't tell me.
At 27: Had MRI and bloodtest and Growth Hormone test and was prescribed with Premarin, Cortef,and Levoxyl by endocrinologist Dr. Biskobing at Medical College of Virginia.
My endo told me my bones was only 13 years old but she did not prescribe growth hormone.
Started blooming at 27 (but still small breast) and no hair under my arms but I have some pubic hair
At 30: prescribed with Estrogen, Medroxyprogestrone,Cortef 10mg, and Levoxyl 75mcg I grew to 5'1" tall when I was orginal 5' tall.
At 35: prescribed with Yasmin 3mg, Cortef 10mg (1 1/2 pill a day), and Levoxyl 88mcg. My infertility doctor put me on Yasmin after the first infertility treatment failed because I use to have 7 day periods sometimes 2 weeks of period. I don't know if I should be taking this because it looks like contraceptive (I think it is decreasing my ability to have a child)
I have more shape now, but I still have a small frame body. I don't look boney, I have meat on my bones now. I am 5'1", 113 - 125lbs, weight varies. I have osteopena now (getting better).
At 34-35: I tried to conceive child by taking infertility treatments: Repronex and HCG twice but to no success. The first time was with artifical insemenation and the second time with sexual intercourse. Both times I grew folliciles (spelling?) 13-18 of them and my last ultrasound was 13mm wide and I took 2 more days of Repronex to get them to 18mm wide. My doctor made me wait 2 days after taking HCG before I could have artifical insemenation or intercourse during a 4 hour window. I have a friend that works in an infertility clinic she thinks that my doctor make have waite to late for me to be fertilized. She said that HCG is given and the next day the patient must come back to be injected with sperm. I don't know what to do right now...I would hate to pay over $10,000 because Virginia insurance doesn't cover invtro fertilization to have no success... I can't find anyone on the internet that was BORN with panhypopituitarism. If someone has any information please share it with me. My husband has 2 children before I met him, but I want my own child. My husband understand that I can't have children and he knew this before we got married but he still wants to be with me and love me...Thank you God for a man like my husband. I been praying the pray similar to Hannahs in 1 Samuel as well. |
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