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New Message on Pituitary Chat

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From: Jubilone11
Message 1 in Discussion

 I am 36 years old, but I will be 37 years April 25, 2008  and really need you 
help to understand the process you went through to have a child. I begging, 
please help me as I am in my last days before turning 40 in the next 3 years. I 
am begging help from other females that have panhypopituitarism (if born with 
it that even better).  I need your help and information.
 
I am very very very desparate for you help. it is hard to find other FEMALES 
with hypopituitarism issue being SUCCESSFUL at having a child, but I have not 
found any female that was BORN with the condition. Please read my store below:
 
http://cushings.invisionzone.com/index.php?showuser=5758   I am Jazlady on 
Cushings website.
 
Introducing Myself - I was BORN with Genital Panhypopituitarism condition
Never had a period until I was diagnosed at age 27 with genital 
panhypopituitarism. My endocrinologist 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 
(underdeveloped in my left eye (blind in one eye)).  I read some reach that 
optic nerve damage can cause other brain disorders such as panhypopituitarism 
read here: http://www.onesmallvoicefoundation.org/whatisonh.html).  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 severe headache 
(last a whole day and felt like my brain had a stroke or something severe - my 
doctor say it could have been the time when everything stop producing hormone) 
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.
 
At: 36 - I take Growth Hormone - but I don't take it lik I am suppose to and I 
went from having osteoporosis at 34 to Osteopenia at 35 and my last bone 
density scan in October 2007 shows I am back down in Osteoporosis in the worst 
stage because I wasn't taken vitamins for calcium or D.  So my doctor put my on 
strict order.  I have been taking vitamins, but for the last 3 weeks I been 
slacking.  I have been sick all this week with a real bad sinsus infection that 
I am finally getting over while sitting here typing you this email.  I am 
taking 1000 ui of Vitamin D and I went to GNC and got Women's multivitamin 
which has Calcium 500mg and D 400iu.

Marie, I want to have a baby of my own, but I am not able to since I was BORN 
with panhypopituitarism. I paid over $2000 for infertility treatments 
(Repronex, HCG and ultrasounds) with no success. My insurance (in Virginia) 
doesn't cover invtro fertilization. I have signed a petition for Virginia 
legislation to pass the bill to allow invtro fertilization to be covered by hmo 
insurance, still in legislation right now. Did you have insurance to cover your 
invtro fertilization? Or did you pay for it yourself? If so, how much? What was 
the deal with the pump (in your story on CUSHINGS website, you said something 
about being connected to a pump? I know the Repronex and HCG sting but what 
other medications did you have to take beside those and Cortef and Levoxyl? You 
mentioned that you have to maintain a balance of hormones...Well sometimes I 
got 3 days without taking my medication (cortef and levoxyl medicine) and a 
month or two without taking Yasmin (female hormone medicine)...I have went 1 
week without taking any of my medication (cortef, levoyxl, growth hormone 
mostly). My doctors says I can die if I stop taking my medication for months. I 
have never done that...But what are the side effects on your body if you keep 
doing that...I do this to frequently ..I don't take my medication in the 
morning either sometimes I take them late at night and I know that is bad... My 
doctor wants me to take 1 pill of Cortef in the morning and 1/2 at night but I 
take them both most of the time at night. Is this dangerous to keep missing my 
medication like this???...Sometimes I miss taking my medication because I don't 
have money to buy it some times or I run out when I am short on money after 
paying bills. I am the breadwinner in my house so I have to work and make money 
stretch. I don't eat breakfast most days...Some days I don't eat dinner...Some 
days I want to eat everything I see..Why does this keep happening I notice you 
talked about your eating habits and losing weight? What do you think I need to 
do for infertility? Do you know anybody that was born with hypopituitarism 
problem? How much did all your treatments and freezing of eggs and so forth 
cost you? I read that most women with hypopituritary have C-sec if they are 
able to get pregnant...I noticed that you didn't make be because you were not 
born with it and therefore have a average size body wereas I have a small 
petite frame and will most likely have to have C-sec if I can get pregnant. Can 
you be my mentor in all this infertility stuff? I don't want to pay $10000 for 
invtro fertilization (my endocrinologist said that I have a 35% chance to 
become pregnant so that is very slim chance if I had to pay $10,000 - I am mad 
about this percentage and then don't have any success)...I pray that if I just 
take the treatments one more time that I will become pregnant without having to 
pay for invtro fertilization. Please help me....Thanks.

Now, I am 36 years old, but I will be 37 years April 25, 2008  and really need 
you help to understand the process you went through to have a child. I begging, 
please help me as I am in my last days before turning 40 in the next 3 years. 
PLEASE HELP ME.  PLEASE! PLEASE MARIE-CLAUDE PLEASE HELP ME.  Marie please tell 
me step by step how you because succesfully at having a baby. PLEASE.

Oh, I have been taking Growth hormone off and on in 2007. I did well for the 
first 3 months but then started slacking because I can't stand the pain of 
sticking myself it hurts sometimes when I hit a vein.  I know I should take it 
again so it can help my bones get better.  My endocrinologist  in Oct 2007 told 
me to start taking it again, but I haven't been takening it.  I took it maybe 4 
times since October 2007 and I haven't done it again and I have a box in the 
fridge from last year (still good).  Is this bad to keep missing growth 
hormone?  I know they say you can die early if you don't have growth hormone in 
your body and my doctor told me too so that was the reason I started in the 
first place.  But how does this affect me for having a baby?

How long can a person live with panhypopituitarism or genital 
panhypopituitarism?

Do you really need Growth HOrmone to live (Humatrope)? How long can you live 
with this condition?

I have been having hot flash - sweating at night. I don't if it is
because I haven't taken Yasmin in a while or if it my generic thyroid 
medication that I just started. Can some one help me?

I have osteoporsis last year it got better but my doctor said this year it is 
back and worst. SO she wanted me to take growth hormone and take more calcium 
because I didn't take any last year. I started Growth hormone in Dec 2006 but I 
have been off and on taken it since March of 2006. I need to start taking it 
again, but i HATE needles and sticking myself is a pain.

Any help you or anyone else can provide would be greatly accepted.

Please email at: [EMAIL PROTECTED]
Please respond ASAP.  Thanks.

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