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03/25/2012 12:56 PM

Mother of pan-hypopituitarism son(page 2)

punchingbagPosts: 7
New Member

That's something rare to my knowledge. PHP is not something which could be inherited, two children with PHP makes one think that there must be some problem in parents (sorry if that hurt), but as far as I know PHP can occur because of any reason. You must consult a physician ASAP if you haven't done that yet. They would need a lot of medical and psychological support. My country? I would prefer to not talk about. Smile

03/25/2012 07:46 PM
Posts: 772

Yes, panhypopituitary IS something that can be genetically based.

03/27/2012 04:49 PM
punchingbagPosts: 7
New Member

God! So how much is the chance that if some PHP gets married and his children take birth with same curse?

08/26/2012 09:23 AM
Posts: 39

Hi all can't begin to feel what you are going threw.I was born with micro penis and small testicles but no other traits did have some illiness when young but most of my life ok.I was very lucky to marry a very nice woman who never says anything about my condition my age is 73 so best of luck.

03/01/2014 06:11 AM
Posts: 1
New Member

Hi! I never even knew this page existed! I am so glad I found it! My daughter was diagnosed with panhypopitutarism and hypothyroidism at 6 days old. She was in the NICU and before they brought in the endocrinologist we almost lost her. Her blood sugar was a very low 16. Since diagnosed, she has been on cortex, synthroid, a growth hormone, and when she gets sick we give her a shot of cortezol to help fight whatever is ailing her. The first year and a half of her life we were in and out of the hospital. The most scary moment was when she was 4 months only (on my sons 4th birthday) she had a seizure and her blood sugar dropped to 14. Again we almost lost her. Thanks to her amazing endocrinologist, she got through it. Now she is a feisty 4 year old who is an extreme pain in my butt. I wouldn't have it any other way!

03/09/2014 04:15 PM
Posts: 1
New Member

your story is touching, mainly because I am going through the exact same thing with my son who is only 2 and a half. He was born with hypothermia and hypoglycemia.. small optic nerve, micro penis and was later diagnosed with hypopituatarism. He is on levothyroxine, genotropin and cortisol. Everytime my son is sick I panic wondering if he will go into adrenal crisis. I do the best I can to determine when he needs a stress dose but it's so hard to tell weather or not they need it.. especially at his age when he can't tell me whats really wrong.. It' so overwhelming but your not alone! glad to see there are other people out there going through the same thing.. this condition seems to be rare even for a lot of doctors.. my pediatrician doesn't seem to know much about the details of his condition and neither does the hospital.. of course when i take him to the hospital regarding adrenal insufficieny there is always an endocrine who is telling the doctors in the ER what to do, but it's still scary when the condition is not common.

05/25/2014 04:32 AM
Posts: 7
New Member

Hey Cool Chick I want to say this might not sound nice but as a patient who has hypopituitarism all he's life. Your son's life will be very hard and unpleasant one.

As all he's life will be burden by medications and the society judging him growing up.

If you feel that you are a responsive mother and taken the burden to rise your son by he's conditions. You must plan for he's life so he will have a better life in he's future days.

I never had anyone planned for mine but I can share my experiences with you.

My words to say is ask your endocrinologist to have a surgery to fix this problem no matter how many percentage this is take the chance!!

He will need growth hormones for rest of he's life and ask medical insurance sales to make a plan for him and pay for that plan if one day you should die he would not have to worry about medical fees. It is very grim for anyone to have hypopituitarism since very few people in this world knows about it and very few has it. Society very don't care about this since it's new and very few people has it. If you want him to be happy you must support him and give him lots of care and love. Understand the effects of hypopituitarism and study or take class knowing the symptoms of it so you would know why and how he acts this way.

05/25/2014 05:31 AM
CoolchickPosts: 9
New Member

Deathdig.... I see you have made 3 posts today, I'm not really a rude type of person but.... To repost another of ur conversations

"Hey life sucks and sometimes we have to suck it up.
Now all you can do is get your health back on track get the hormones you need and get back normal. Don't worry about women in my experience all women are sluts and they will leave you if you don't have enough money or some how in problems. If you have money you have bitches. "

I always try to read the posters other discussions to get a view of their "state" and yours to me seemed like a very angry, hurt and upset poster.

To me it seems like you haven't had the care and support that you have needed throughout your life or now, you seem to be very angry against the world and that anger seems to be presenting itself in your post about your condition and woman, . Perhaps if you took some of your own advice "suck it up" and got on with things and tried to make the best of what you have you wouldnt be so negative and so down on life in general. Believe me there are many people in the world who have equally as hard a time or an even harder time that those with php and I truly believe it has a lot to do with the way you deal with it, if you let it consume you and sit in a corner moping about it then you will be the person you are rather than accepting you have it and making the best you can out of life.

Thankfully my son does not have any other conditions that can go alongside php but he can be very sick at times just like my other children were as they grew up, he just needs extra help when he is sick but we don't stop him doing anything he wants to, he is just like his siblings until he gets sick or hurt and then we deal with that as it happens. I know of other men that have this condition and are now leading their own version of normal lives, no offence but you seem to be wallowing in your own self pity and letting the condition consume you instead of living life to the full as best you can.

I would suggest that you need to see a doctor to review your medicines or a counsellor to sort out your "blame" issues, you are blaming your condition for everything instead of rising above it as best you can.

I apologise in advance if this message is hurtful to you, I just feel so annoyed & sorry for you that you are so negative about your condition and you rate women as using sluts who are only after money,

I am a hardworking loving mother who would lay down her life for her family. Not a using money grabbing slut.

05/26/2014 11:29 PM
Posts: 1585
Senior Member


I agree with Coolchick. I understand if you're angry. This is rather rare and most people don't understand it. We can't blame them or say bad words to them coz they don't understand,'s not helping.

I hope you can have a good relationship with your doc coz this is a long time commitment.

Forum like this can be a big help too coz we or any of us can understand or relate to what you're going through.

Friendly, warm words can help promote support and care can be helpful.

I have my ups and downs too. And I vent a lot too.


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