Need an endo in boston

[fraulein_Maria]

for myself this time. I'm so mad that i've already taken it out on several trees, and the lawn is the next victim.

please see my post in "Got doc?" for details.

[Priestess]

for myself this time. I'm so mad that i've already taken it out on several trees, and the lawn is the next victim.

please see my post in "Got doc?" for details.

Hiya Maria,

It wouldn't let me reply to the other post, said it was expired. I wish I knew anyone good in Boston. The last time I was down there, they had two surgeons stare at my crotch and then told me they'd operate immediately if I was a child, but that being an adult made me unsuitable.

Have you tried the Hitchcock medical center in Hanover? There are supposed to be good endos associated with them.

It kind of sucks that you've got a high enough testosterone level to be poisoning but they still want to believe that it's not natural, as though you must be doing it to yourself. I think that might be a general purpose excuse, blaming the patient, assuming that we're lying until proven otherwise. :rolleyes2

[neko2]

I'm not quite following this. You needed to go to the emergency room for cortisol because of what? Missed dose? Doc didn't prescribe enough?

How high is your testosterone level?

[fraulein_Maria]

I'm not quite following this. You needed to go to the emergency room for cortisol because of what?

>>>>>> allergic reaction to spider bite. standard treatment until just a couple of years ago. body parts swell dangerously..... closely related to anaphylaxis.
anyway, they gave me the standard dose by mouth (so it was prednisone instead of pure cortisol this time) and in a few hours i began to experience the classic symptoms of an adrenal crisis...... the dose was enough to shut down the gland... not enough to treat the original problem, or to even LIVE. when i had written the e-mail to here, i was still in the midst of it, my brain turning to mush.

i called the ER (could not afford to pay for a second trip, that might not even be worth it) and after explaining ONCE AGAIN, my symptoms and my suspicions, he told me to take a second dose..... doubling the standard dose, and to come back to the ER if i saw no improvement in an hour. Le phat chance! if it didn't work, i was gonna beg my landlady to take me to an ER that isn't famous for killing Pt. by incompetence!

I'm of native american ancestry (God i wish i didn't have to explain this every time!) which means that i usually respond to a CHILD's dose like i'm OD'ing. one drink, i'm tipsy. 2 drinks, i'm stupid. 3 drinks i'm, unconscious. so i haven't had more than one drink in years. AND i half the child's dose of OTC products to keep from needing the ER for poisoning. <<<<<

How high is your testosterone level?

>>>> the blood level is "normal". but "normal" is a relative thing. my european sisters with hollow legs can drink me under the table in no time at all. if i had the same test. level, i shudder to think of what my prader level would be. its quite bad enough as it is.

[Priestess]

Thank you for trying to explain, Maria, though I'm still having trouble with understanding what you mean. So I've thought up some silly questions to ask :interesti

- When you say that your sisters back in europe have "hollow legs", do you mean osteoporosis? And if so, do they have it as a side-effect of being treated for diagnosed CAH?

- Have you basically only had problems with adrenal crisis from their being the result of receiving emergency cortisone/prednisone for allergic reactions?

I'm definately not an expert on anything, but it seems like there's more than one way to end up with adrenal insufficiency, besides just CAH. Addison's and secondary (pituitary-based) insufficiency are two that I've read about; as far as I understood, those wouldn't raise your testosterone.

Also, there are supposed to be some less common forms of CAH. 3B-HSD deficiency is said to cause virilized birth-development in girls but not raise androgen levels too much later in life. It seemed interesting because if that were your case, then your liver would be tied up with DHEA to testosterone conversion, and you probably wouldn't be able to drink as much as most drinkers do.

I guess you're fortunate that you survived this last crisis without being too far impaired to type. Hopefully that means you can call for help if/when the next time arrives. When this stuff happens to me, I'm not able to move or talk and I have a hard time thinking straight while I'm collapsed wherever I fell. Though I choose not to drink and I'm not allergic to bee stings (they just hurt)

[fraulein_Maria]

[QUOTE=Priestess]Thank you for trying to explain, Maria, though I'm still having trouble with understanding what you mean. So I've thought up some silly questions to ask :
- When you say that your sisters back in europe have "hollow legs", do you mean osteoporosis?

>>>>> lol. it is a colloqualism. it means (and its especially true of europeans) that they can drink so much alchohol without ill-effect that they seem to be pouring it into a hidden compartment in there prosthetic legs. :) unlike native americans they produce an enzyme creatively named "alcohol dehydrogenase" in LARGE quantities, but it is taken up by other toxins aswell. i did not inherit my polish father's gene for this... but my native american mother's CAH gene.<

And if so, do they have it as a side-effect of being treated for diagnosed CAH?

- Have you basically only had problems with adrenal crisis from their being the result of receiving emergency cortisone/prednisone for allergic reactions?

>>>> no. i have also had it on other occassions. i was told it was severe dehydration at the time....... but they did not address the underlying cause and i'd say i'm damn lucky to have lived through it all the times i have. I had been drinking nothing but pure H20..... in large quantities. i had eaten peanuts(no hypoglycemia) and i'd even snacked on chips (NaCL) but my potassium must have been dropping through the floor every time........ OJ (potasium ascorbate) was the only think that restored me. <<<<<

I'm definately not an expert on anything, but it seems like there's more than one way to end up with adrenal insufficiency, besides just CAH. Addison's and secondary (pituitary-based) insufficiency are two that I've read about; as far as I understood, those wouldn't raise your testosterone.

>>>> yes, but i don't have the other symptoms. <<<<

Also, there are supposed to be some less common forms of CAH. 3B-HSD deficiency is said to cause virilized birth-development in girls but not raise androgen levels too much later in life.

>>>> God that sounds like me! Jesus! i never wanted to be anything out of the ordinary. it would also explain why the doc's cut me at birth and then sent me home with no treatment. can you send me info? <<<<<

but my androgens are high FOR ME. not for europeans (who are the medical "norm") i began singing BASS at 12 and was so self conscious about it in my speaking voice, that to this day i find myself putting some "breathy"ness in it to make others comfortable. though at 41 this may no longer be necessary as my voice seems to sound "my age" at last. then there is the male pattern baldness, the male pattern of growth around my nipples and up my belly. the 'roid rage, the 'roid hunger, the 'roid sex drive that any body builder can tell you about, that i get all naturally. and then theres that interesting thing inside me....... *blush* <<<<<

It seemed interesting because if that were your case, then your liver would be tied up with DHEA to testosterone conversion, and you probably wouldn't be able to drink as much as most drinkers do.

>> BINGO! <<

I guess you're fortunate that you survived this last crisis without being too far impaired to type. Hopefully that means you can call for help if/when the next time arrives. When this stuff happens to me, I'm not able to move or talk and I have a hard time thinking straight while I'm collapsed wherever I fell. Though I choose not to drink.QUOTE] >>> me neither mostly. <<<

[Priestess]

For 3B-HSD deficiency, you could search for "3-Beta-hydroxysteroid dehydrogenase", wikipedia has an easily read section on Congenital Adrenal Hyperplasia, with a sub-section for 3B-HSD. And then there's all the usual learned medical papers online.

You could also trying looking around at http://www.congenitaladrenalhyperplasia.org
though their forums seem mostly filled with parents talking about all the shared experiences of raising kids with CAH, there's a chance that some people there might be able to help. And they were fairly nice with me, for the times I visited, even though they couldn't help much with situations as rare as mine.




Also, there are supposed to be some less common forms of CAH. 3B-HSD deficiency is said to cause virilized birth-development in girls but not raise androgen levels too much later in life.


>>>> God that sounds like me! Jesus! i never wanted to be anything out of the ordinary. it would also explain why the doc's cut me at birth and then sent me home with no treatment. can you send me info? <<<<<

but my androgens are high FOR ME. not for europeans (who are the medical "norm") i began singing BASS at 12 and was so self conscious about it in my speaking voice, that to this day i find myself putting some "breathy"ness in it to make others comfortable. though at 41 this may no longer be necessary as my voice seems to sound "my age" at last. then there is the male pattern baldness, the male pattern of growth around my nipples and up my belly. the 'roid rage, the 'roid hunger, the 'roid sex drive that any body builder can tell you about, that i get all naturally. and then theres that interesting thing inside me....... *blush* <<<<<


It seemed interesting because if that were your case, then your liver would be tied up with DHEA to testosterone conversion, and you probably wouldn't be able to drink as much as most drinkers do.

[mohnblume]

I haven't seen her here nor in the messenger ... for quite a while ... is everything ok Fraeulein?

[fraulein_Maria]

I've had my phone/DSL shut off. I paid verizon most of the bill, but they still won't turn it back on till i pay the whole thing.... which i think i can do by Sat. till then i have been swamped trying to keep up with work related e-mail (using a kind friend's computer an hour a day) and have had little time for anything else. I'm still seeking an endo in the Boston area and watching my electrolytes like a hawk. I've got some leads, but they are NOT panning out so far. If anybody knows an endo that treats CAH in Boston PLEASE write me.
I'm too scared to see the regular doctors anymore. They are all just guessing and pretending they know more than me while there doing it, and pocketing there fee while i go broke.

I don't want to die before i get the chance to hug my daughter one last time. So much i want to say to her........