Maria 3 beta

[Sunshine1]

Hi Maria,

:bounce: I enjoy reading all of your posts.

Could you tell me more about 3 beta?

thank you :smile: :wavey: :bounce:

[fraulein_Maria]

[QUOTE=Sunshine1;15467]Hi Maria,

:bounce: I enjoy reading all of your posts.

>>> thanks hon. :) <<<


Could you tell me more about 3 beta?

>>> no prob. :) I'll give some basics right here. I do have alot of detail if your interested however, that i can send e-mail if you like. PM me for that.

Overview:

3-Beta Hydroxysteroid Dehydrogenase Deficiency

One of the few forms that can make both XX'ers and XY'ers MILDLY ambiguous, it is seldom caught at birth because those affected can make enough of ALL 3 steroid hormones to live... but unlike there "normal" brothers and sisters, cannot make MORE under stress. The body's need for cortisol can jump 8 times for a sustained physical activity or illness (or allergic reaction) and such things can precipitate an adrenal crisis. Like other forms of CAH, the body will attempt to compensate by making androgens, and this effect can be seen. Since this effort is not sustained as it is with other forms of CAH, testing the urine for testosterone is fruitless.
Unlike other forms of CAH, 17OHP is not elevated, Pregnenolone is. 17OHP (like regular progesterone) competes with estrogen for steroid receptors. The effects are profound.
While most CAH's will have anovulatory cycles, light periods, and small breasts; 3-beta's will have irregular, heavy periods, and large breasts. They will often have an initial Dx of PCOS, until a pelvic ultra-sound rules it out.

[Sunshine1]

Hi Maria,

I bet 3 -beta isn't that rare but rather poorly understood and under diagnosed.

thanks again for posting.


:bounce:

[prince....ss?]

Sunshine1

Long time no see. What have you been up to? I hope life is good!!!

[fraulein_Maria]

[QUOTE=Sunshine1;15593]Hi Maria,

I bet 3 -beta isn't that rare but rather poorly understood and under diagnosed.

thanks again for posting.

>>> your welcome. persecuted by CARES, and massively under Dx'ed.<<<

[Sunshine1]

Maria,

I wonder how many people that died from something else that could of been help if 3 beta was on the radar screen? People that died on an operating room table becuase the doctor had no idea that they also had 3 beta?
sad really.

Dear Princesss,

I'm doing Ok and I hope you are as well. I don't post that much after that Everyday Gender post but I do veiw what is going on.
I'm trying not to get diabetes and working on my diet and exercise. My Endo was doing blood work to see what my blood work glucosewise was. With Having:
1)Simple Virilizing CAH & clitorectomy, urethroplasty, vaginoplasty
2)Hashimoto's Thyroiditis
3)Celiac Sprue
4)Cancer Survivor (Adendocervical carcinoma)
It could be lots worse but my spirits went low when the Endo lowered the prednisone and upper the synthroid while remarking "I'm trying to help you not get diabetes" I thought I exercised enough and I do try to watch the carbs/ sugar but I guess I have to do better. I didn't think I was that fat ....just chunky or thick but if I don't lose weight the diabetes will be the next thing. The endo had the nurse do a test called HBa1c which was 5.5 and I don't know if that is good or bad. I was aslo given a paper about diabetes and told to try the South Beach Diet.

I also told him how I really wasn't connected to gender and felt like I floated from one gender to another. So now he feels I have Gender Identity Disorder but I feel like this is how I'm supposed to feel and I feel like me :smile: not someone who is pretending anymore.

Anyway, I'm goign to school for healthcare...nursing and a doctor told me that they need my pain in nursing. Maybe what I've been through might help others?

take care ok.

[Kailana]

normal is less then 6.2, greater then 6.3 your then impaired and at higher levels considered full blown diabetes.

Not sure how good the south beach diet is, not really familiiar with it, as I thought that was mostly drinking juices, sort of like a quick body purge, and those arent good for anyone prone to diabetese, to much suger high carbs too. Mediterrainian diet is what you should be eating, one of the healthiest diets and easiest to maintain/stay on.

Congratgs on choosing a nursing career, i hope it works out for you. From my experience though, it is very difficult, most classes i've taken so far will keep popping in genetic disorders, will be repeated in most psyche, cell bio and anatomy courses, yet wont mention what they really are. I find it very difficult when professors/instructors bring up a condition, and then only mention the rudimentary effects about it, and not go into any real details, what it actually does, how it can affect a person, also found that with each doctors appointments I crash hard-PTSD- really bad and depression hits hard interfering with my school work. I hope you have thought about getting some counseling, as it could happen to you as well. I know everyone is different, some of us are stronger then others, or at least me anyways. Just keep in mind someone you can talk to when or if you have a emotional break when intersexed topics come up. I know I am very touchy when people assume things about intersexed conditions, or report false or incomplete statements.

Best of luck to you.

[fraulein_Maria]

[QUOTE=Sunshine1;15825]Maria,

I wonder how many people that died from something else that could of been help if 3 beta was on the radar screen? People that died on an operating room table becuase the doctor had no idea that they also had 3 beta?

>>> many i suspect. like my mom and 2 of my aunts. non-cah relatives live into there 90's... cah's barely make it to 65, and they had the health ins. to test for everything and treat everything. I feel ancient. no more test. high to cover up just how much milage i've put on this spare tire. i pray i live long enough to see my daughter again... just 4 more years... then if Godde takes me home, i'll die content. <<<

Dear Princesss,

With Having:
1)Simple Virilizing CAH & clitorectomy, urethroplasty, vaginoplasty
2)Hashimoto's Thyroiditis
3)Celiac Sprue
4)Cancer Survivor (Adendocervical carcinoma)

but if I don't lose weight the diabetes will be the next thing.

>>> there's alot written on the subject of the thyroid, pancreas, adrenal axis. in a nut-shell, your adrenals fried your thyroid and now both are working on frying your pancreas. the key to preventing it as your doc knows is losing the weight, BUUUUUUT

losing the weight is contingent on getting your thyroid level PERFECT. too low, and your body thinks its starving and hangs on the every ounce no matter how little you eat, by lowering your body temp. and reducing your energy level. too high and it tells the pancreas to make more insulin... but if your insulin sensitivity is compromised, you wind up with pancreatitis instead. its not pretty.

the best advice i can give; is to sit-up when you feel like lying down, to stand-up when you feel like sitting, and to walk for at least a half hour continuously every day. swimming is even better if you can.
avoid meat if you can; eat lean meats if you can't... fish and poultry of all sorts. May your carbs be complex and your cheeses low-fat.

ruthlessly eliminate your weaknesses. If you KNOW butter is your down fall, avoid it completely. <<<

I also told him how I really wasn't connected to gender and felt like I floated from one gender to another. So now he feels I have Gender Identity Disorder

>>> i can't say i have a firm grasp on gender either but i hardly consider myself disordered over it. My aunt 'Nanna was famous for this pearl of wisdom...

"I practice mind over matter. If you don't mind, it don't matter! Now, get out of my kitchen!!!!" :) <<<

but I feel like this is how I'm supposed to feel and I feel like me :smile: not someone who is pretending anymore.

>>> way cool :) <<<

Anyway, I'm goign to school for healthcare...nursing and a doctor told me that they need my pain in nursing. Maybe what I've been through might help others?

>>> it should. :) if we could get the nursing assoc. to adopt a policy against IGM, it wouldn't matter WHAT the doc's want to do now would it? ;) <<<

[fraulein_Maria]

[QUOTE=Sunshine1;15593]Hi Maria,

I bet 3 -beta isn't that rare but rather poorly understood and under diagnosed.

thanks again for posting.

>>> would you like to meet other 3-beta's? after Kelly Leight's nonsense, i set up a yahoo site for us... because even though it was me she personally attacked, the other 3-beta's weren't the least bit happy... So at there suggestion, i set something up for us...

all CAH's are welcome, not just common CAH's. there a 4 other 3-beta's there. one of them is the west coast mod, and as soon as we can get someone there that lives on the east coast to agree to help, I'm stepping down.

i hate modding. I just do NOT have the temperment for it. Peter's got my respect, even if i don't agree with him occassionally. its a rough job.

anyway, send me an e-mail, and i'll issue an invite. 2 of the 3-beta's have been Dxed much longer than me and one of them (thank Godde!) is a pharmacist, so we have excellent long running discussions of medications and dosages. It would probably make eyes glaze over with boredomn here so i'm glad to have it there.

[peaceandparty]

i think i remember sunshine from a while ago

today it was raining!

hello sunshine and all

[fraulein_Maria]

2 of the 3-beta's have been Dxed much longer than me and one of them (thank Godde!) is a pharmacist, so we have excellent long running discussions of medications and dosages. It would probably make eyes glaze over with boredomn here so i'm glad to have it there.[/QUOTE]

>>> i thought the following observation might be useful to all CAH's... and those with other IS conditions who may be suffering from adrenal failure secondary to missing HRT.....

I had been taking 10mg of prednisone all summer. that's more than a bit high, but i felt that between the heat and the hard outdoor work, it was more than justified...

So when the cool weather came, and i wasn't working as much out side came... as i promised all my CAH friends i would, i lowered my dose...

and thus began a downward spiral.

I had expected it to come, and hoped that what little adrenal function i had remaining (because as 3-beta, my adrenals DO have some function) would kick in......

Alas it did not turn out as hoped. My adrenals DID kick back in as expected, but could STILL not make enough cortisol, so it began once again making what they could make.....

androgens.

But with partial supplimentation, they did not make very much...

prior to prednisone, they made SOOO much, that i suffered depression rarely, testosterone poisoning produces a "high".

So what wound up happening instead, was that i would wake up every morning hot and bothered....

and instead of feeling good because of it, i felt nothing but despair.....

imagine waking up knowing its your birthday...

and see! nature has given you a lucsious cake!

but then you realize that no one is coming to your party

and any attempt to eat the cake yourself

is full of pain, and choking.

But i put up with it hoping that it would just take time.....

but my menses got thrown out of wack, and the last straw was the nausea and vomiting of adrenal crisis...

So i'm back up to 10mgs.....

It was nice to wake up rested and HAPPY.

To be glad to see the puppy, to see the rising sun over a spectacular view of 7 mountains: the fall foliage, breathe-taking in its splendor. To be glad to be alive, instead of wishing for Godde to just take me home.

I don't care if the high dose fries my adrenals anymore. Existence is insufficient. I want to live. i want to be alive for my daughter. I want to be able to give a lover a whole person... not just half of one.

[Kailana]

maria how low did you go too? Just curious to know if perhaps there might be a happy medium inbetween what you went down too versus maintaining the 10 mg dosage, like 7.5 mg or something, if you had gone down to 5 mg, perhaps that was to low. Sorry for giving the perception you don't know what your doing. I do know you have a fair amount of knowledge about meds and how you usually respond, just thought i'd offer what little advice i could.
Sorry to hear about all the dificulty's too, I do understand how meds can through off your equilibrium and make life kinda unbearable.

Best wishes