's Endocrine Update (lots of pituitary problem)

March 1, 2006

I figured I'd take a moment to give you the update. (Besides the

fact that he's already off the ventilator as of yesterday afternoon

and is using those brand new lungs beautifully!!!)

Anyway, aside from 's hypoT, it's also coming more and more

apparent that his pituitary is really a huge mess. He has a follow-

up MRI from the one he had in December while he's in the hospital in

a couple weeks or so, so they can recheck the thing they saw on his

pituitary gland that I mentioned before. So, here's what his

pituitary is doing:

1) Putting out way too much TSH. And it's not because of a " simple "

hypoT, with the fact that his fT4 is constantly in normal range and

sometimes even above. His pituitary just seems to be spitting out

however much TSH it wants whenever it wants. (It fluctuates

ridiculously in a matter of a couple weeks. Up. Down. Up again.

Up higher. Down a smidge. Etc.)

2) Putting out a tad too much Prolactin. Causing him to have tender

man/boy boobies. Not quite outside normal range, but on the upper

very edge of it.

3) Putting out not quite enough Growth Hormone. Causing (helping

cause) him to not grow for over a year. Again, not quite outside

normal range, but on the lower very edge of it.

4) Putting out not enough Vasopressin. Causing him to pee

wayyyyyyyy too much. Thereby causing him to drink wayyyyyyy too

much. He has to have shots twice daily to fix this problem or he

could very easily become extremely dehydrated very quickly.

So, it is quite obvious the darn thing is a mess, but no one can

figure out why. I'd hate to have it turn out he DID have some type

of pituitary tumor or the like, but to have some kind of answer as

to why everything is so messed up would be nice. None of the

testing indicates LCH (Langerhan's Cell Histiocytosis), which was

our other thought (and would have explained the lung damage, liver

damage, diabetes insipidus, hypoT, etc).

I don't know if anyone here has any thoughts or ideas on this whole

situation, but if you do, I'd love to hear them. Because 's

case has been put before the entire endocinology department here at

the U of M and everyone's perplexed with him.

Hugs to all!!

Ami mom to , 8 - hypoT & pituitary something, lung tx 2/26/06,

liver something

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