Update

[Jonah]

It's been a couple of months since I posted an introduction after one of my doctors first suggested that I might have NC-CAH. When I asked about it again at subsequent visits, that doctor and the other two I brought it up with said that since my electrolyte levels are alright, they don't think it's a life threatening issue, and the endocrinologist and nurse practitioner said that they'd read up on it.
I've had a host of other health issues (which is why I've been seeing so many doctors) and my testosterone dose got lowered once again. I'm scheduled to have my first surgery, cholocysectomy, in just under two weeks.

My youngest brother (I have four) is six years old and has been especially cranky and badly behaved the last few months. He has recently grown underarm hair, and has also been through a dramatic growth spurt. He has always been hairier and darker than the rest of the family (including me). My mother is planning to make an appointment for him to see a pediatric endocrinologist, though she hasn't done it yet. I am wondering about how likely it is that this is something not genetic. None of my other brothers grew underarm hair before the age of 11 or 12 (and the second youngest is currently 12).

[Kailana]

it's inherited and likely is NCCAH, like with you, or likely same with you. Think too many people get caught up in the Severe Salt wasting forms of CAH. Not all forms are as deadly. Your lil brother though should get checked soon, cause regardless of what form of CAH it is, CAH can be nasty, life threatening especially when people don't think it is a serious issue. Your parents might get complacent and overlook things and assume your little brother is coping ok untreated as you did. May make a drastic error, that could end in his life by not taking him to the ER when it is life threatening.

thanks for the update by the way.

[wowgolds]

okay...it is right

[Jonah]

My little brother will be seeing a pediatric endocrinologist, a Dr.Duck, in three weeks. I am trying not to think about it too much.

[JOS]

and good luck with your surgery
try to keep positive and keep asking lots of questions
then re-ask the questions... because sometimes it's hard to take everything in all in one go.... at least that's what I find :o)

jos x

[Jonah]

I've been feeling a little bit reluctant to come back now that I feel like I got a little too excited by the possibility of NC-CAH.

My little brother did see a pediatric endocrinologist, who said that my brother has got a skin condition causing him to grow hair and is not having a real puberty. Therefore he did not run any tests. He said he's never seen what my brother's got before, and gave us a recomendation to a dermatologist. We haven't followed up.

In the meantime, the week before my colocysectomy, I got diagnosed with hyperthyroidism (and hyperparathyroidism too) and everything else is on the back burner. We are running through which disease could be responsible. The antibodies came in negative for the common autoimmune thyroid diseases, and I am waiting on the results of an iodine 123 uptake scan with panel, which will hopefully be more informative. I've read that adrenal problems are common while people are having thyroid problems; perhaps if I do have an adrenal problem it is just a coincidence that I am also trans and not a congenital issue; who knows. I may or may not pursue further testing of this subject, depending on what the cause of my hyperthyroidism is, how long it takes to stabilize me medically, and whether or not my adrenals act up further.

So at the end of the day, I would say I think that things are pointing away from me having a congenital adrenal issue, although I may get tested at some later date anyhow. I will probably not be visitting these forums much unless I get a diagnosis that's relevant to intersexuality.

[Aseras]

Yay for "whack a mole medicine" and more tests. Makes you wonder if you really are living in a House MD episode. I feel for you, hope you get your answers and get things taken care of quickly and correctly.