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Discussion Starter #1
I was just wondering if anyone has a child with either disorder. Technically, DS is hypopituitarism - hypothyroid, no androgens, no growth hormone, and no ADH but does make cortisol.<br><br>
I'm a member of the MAGIC Foundation but DS's normal cortisol production puts us on the outside there.<br><br>
Anyways, any other panhypopit/hypopit moms?
 

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I don't have a child with this condition, but I do have a husband with it! I know that he's been taking growth hormone for most of his life (there was a break somewhere between the end of puberty and his late 20's when he went back on). He started testosterone replacement in his 20's (he did go through puberty, but late and lacked body hair) and has taken it ever since except when we were trying to concieve. Despite his basically zero testosterone, he's gotten me pregnant naturally 6 times (we have two daughters, I'm pregnant now, and we've had some losses)... which amazed us AND his doctors since he'd been told since childhood that this would likely be impossible!<br><br>
My DH also has also produced normal cortisol levels, which has been an amazing relief throughout his life (obviously). In the past 2 years, however, he has had two episodes during fevers where he has become extremely dehydrated (though he has not had any vomitiing or other "outs") and had to go to the ER... even though his cortisol still tests in the normal range (low normal) we're frustrated that we haven't thought to test it DURING one of those two medical problems. at this point, we're going on the assumption that he needs low level steroid replacement during a fever-illness (or stomach virus) just to be safe. apparently this does sometimes happen later on in life (DH is 39) to some non-cortisol deficient pts with other pituitary dysfunction.<br><br>
other info... DH is a pediatrician (a decision he said he made at 4 years old during some of his treatments) and has reached an adult height of 5'6" (which he is very happy with).<br><br>
if you have any specific questions, I'm happy to ask you for him! He knows a lot about this issue as a patient and as a physician.
 

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Thank you!!! This is so wonderful to hear. DS seems extremely unusual with the "normal" cortisol levels, and we find that (understandably so) the biggest focus is on the cortisol-deficiency amongst other parents. It's also very nice hearing about an adult male with similar deficiencies.<br><br>
While our DS has immeasurable amounts of testosterone, we know he makes enough to have normal size penis and though underdeveloped his testicles are descended just in a tighter scrotum. DH and I's biggest concerns/wonders have mostly focused on DS's male development and fertility. Even if your DH is unusual, it's always good hearing about the possibilities.<br><br>
We've been told it's unlikely DS would develop a cortisol deficiency but that hypoglycemia can be common. In fact, they combined his GH tests to check his blood sugars as well. We'll just have to keep an eye on it as he still nurses frequently and is a snacker rather than meal-eater.<br><br>
Since I don't know more specifics about your DH, would you mind asking him one question for us? I'll private message.
 
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