A member suggested I may have CAH

[amy3000]

Doctors can be a nuisance and I can understand your fear of seeing one - It pisses me off when people try to make me do things I don't want to do. Doctors also have a history of doing injustice to intersex and people who are different./ - still thats not to say you might not find a good one who you can trust and who will listen to you.

I am not a doctor - this is not medical advice, but

I think who ever it was that told you to suspect 3beta HSD could have been on the mark.

I would be interested to know what birth control pills you took to get pregnant - still.



What I have done in the past when I have needed to see a doctor but have been afraid they would see my medical history and not listen to me, is to fake my name. i faked my name to a doctor when I went deaf once, because i knew something was wrong, when other doctors had said I was a loopy loop and not to be listened too... turned out I had a brain tumor and I could well be dead if I didn't take proactive action.... psychiatrists are worse than endos i tell you. I had to see five psychs after that to get a previous diagnosis reversed and complain about her to the doctors council....

anyway....

3b HSD, I would suggest that it would be interesting if you knew what your levels of different steroids were...

17 OH progesterone is commonly investigated in such things as polycystic ovaries, as well as CAH. In classical CAH it can be very high, and in other types very low. - normaly it is say 1-10 - 21 hydroxylase cah might have a number of 300 or even 3000 but 3b HSD CAH individuals may have a level of something like 1-2 or less. You could tell the doctor who you see with a fake name that you have polycystic ovaries, and your "mum had a weird 17 something OHB level or something, and told me to get tested"....

As well as 17 OHP they will probably want to check your FSH and LH levels, and also hopefully your oestrogen levels, and even better your testosterone levels.



If you take testosterone regularly you might want to skip a fortnight and then wait another couple of weeks before you go and see this doctor with your pseudonym. Also try and get them to do a cortisol test - they do cortisol tests for such things as depression - low energy and thin - or if you're shakey and anxious.



Now - if it's 3bHSD - then probably your 17 OHP levels will be low, likewise your oestrogen.



I would like to think that an endo will listen to you if you express your desire to take testosterone, and tell him that as far as you are concerned you're a boy - Who gives a shit what anyone else thinks really - it's you that walks around inside you every day.

bear in mind that testosterone carries risk. I would say the notable one for you would be ovarian cancer or cancer of the uterous. A hysterectomy could fix that.... testosterone can also bump up the immune system which is a pain in the ass as you don't want horrible alergies all the time and worse. And then their is that emotional side of it. Go gentle on yourself I would recommend.

If it is 3bHSD, then it would be really good for someone who knows to treat you as they could give you other steroids that could make you feel a shit load better - namley cortisol - or the synthetic derivatives made by currupt drug companies - namley dexamethasone or prednisone.

and wowee - life could feel a whole shitload better for you.


It would be interesting to think about the way you smell on testosterone.... salt wasting that everyone talks about makes you stinky, and perhaps you smell different to yourself sometimes.

Oh, and CAH has been associated with a higher than normal IQ in the past. one of Moneys protege's tested a bunch of CAH individuals (non salt wasters) and found their IQ to be 108-118 or theirabouts.... doesn't sound that high but it is quite alot higher than average, and unusual. Some groups of people have selectivly bred with family members to enhance the prominence of this trait in their children... it's called eugenics.... sounds a bit fucked up to me, but I don't know the full gory details, and I think they feel quite justified in it and do it in what they consider a safeish way......

What is more important in my opinion is EQ - emotional quotent. You need to look after yourself and find your inner peace and stregnth.... wonder if anyones done a study on EQ and CAH... LOL



ps = the views expressed in this post are from a rank amaetur and not to be taken as strict medical advice under any circumstance - I recommend finding a doctor you can trust and talking to him or her.

[amy3000]

I think you should have a chat to milton diamond if you get a chance. A very knowledgeable person. look him up on wikipedia... very experienced at debunking bullshit from doctors who should know better.

lives in Hawii.

I can send you his email address if you like, or you could contact him via

http://www.hawaii.edu/PCSS

Theirs a great amount of reading on the website too if you're interested. Very informative.

[amy3000]

oh, and another thing, I would suspect from the information in earlier posts, and knowing a little about how DNA works, that if this is 3bHSD you have a very small chance of passing it on to your children - as long as you partner is not a relative.

[Rycharde]

Thanks for all the info. Unfortunately in Canada the first thing they ask to see is your health card. No fake names here. Almost impossible.

Keep that in mind.

But also I've got a sympathetic midwife who's able to order that tests be run for hair brained ideas. So if anyone has any suggestions on what tests I should get her to run and could tell me what they think of the tests...I know thats a hell of a lot risky. But if that gives me a picture of what is going on so I know then hey, I know.

I took a brand of pills called marvelon as birth control pills. I started my cycle within 2 months. In 5 months on instone forza-t supplements my estrogen peaked enough for me to have three very small cycles and then two longer ones. My estrogen showed as "normal" so I grabbed the nearest guy...nono well it was kinda like that...omg sounds so bad but yes, as soon as I saw that I jumped in the sack and made a baby.

SO what I'm going to do "long shot" since I want my testosterone more than anything I'm going to go to the Sherbourne clinic in Toronto, with my new legal name, and keep my old legal name on my stuff in Hamilton. And I'm going to see my doctor here for CAH and see if he can help me out. While doing that I'll be getting my approval for T from the people in Toronto. So I'll be able to "start T when I'm ready" theres my security. Get the midwife to test everything here just because I asked her to.

SO what do I ask my midwife to test and what do I look for? Then I can say:

My test results for "Test" came back saying "Result" showing that you should run "Test2" to see if I get "ResultA" or "ResultB" which could indicate that I have CAH. Give "them" a reason to look into me having CAH.

Because I tell you right now I'm going to go into the endo and say Hi I think I have CAH. They will test for the most common ones, say no I'm fine and tell me to bugger off.

So I want to walk in with you know, something !

I also want to know what to say to the psychologist who is going to diagnose me as manic depressive. Which I am not! Going after the gender identity disorder diagnosis. That way no matter what they find I can still continue to get my disability pay and they will make sure I get the hormones and therapy I need.

When I have T I do stink pretty bad but I noticed that axe smells awesome on me.
Quite frankly I don't care about the down sides to being a man. So what if I'm stinkier, harrier and die sooner? That would happen had I been born a man in the first place.
I'd rather die 25% sooner than spend a quarter of my life moody and bleeding.

I see what you're trying to say about being on testosterone sucking a little bit. But I feel like crap without it, even been suicidal, not being able to stand myself being peter pan with a 2" cock.
I just want my body to grow up with my mind. And being female is no part of it.
I moved away from my home town, where I was known as a male to try being a female in Bulgaria with my prince charming. I had a fairytale wedding and the perfect husband. I was where any woman would kill to be. A great husband, a nice home, a wonderful mother in law in an exotic country where my one months Canadian income could last for a year!

I got out of that as fast as I could. It was hell for me. I can't live as a woman no matter what. I got back into myself.
Another thing I can't stand is this eternal puberty. Having just that nice hair on my face that just grows in so long and won't grow into much more if I leave it without shaving for a week. My geeky, always cracking male voice that sounds like a teenage boy. The feeling like I'm just stuck here.
I want my voice to drop down and my facial hair to be normal.
I want to stink to high heaven! I don't care!
Allergies, oh well. Like I don't have em already? That's just part of life I can cope with. Take a tablet, get rid of the cats and watch the pollen/pollution alert on the weather channel.

Not really all too concerned with that.

And about the moods, they fit. They fit me. I'm male gendered, and my mood feels more stable and controlable when taking T.

What you have to bear in mind is that I'm supposed to be male, in my mind and in reality. I have a male gender, I have a male brain and frame of mind and having male hormones that match that pair up and create something that works.

I'd say estrogen makes me moody. On those pills I've severely beaten and abused several partners. I smashed a book shelf and punched holes in walls. I think we want to keep me far away as possible from estrogen or anything related.
On testosterone it was AMAZING. I could explore the full spectrum of my emotions.
Things that would cause me to be upset or cry or feel crazy would not make my body react like that, I stayed calm and was able to feel the whole feeling without snapping or breaking or going nuts.

When I first took birth control at 14 years old I threw an oak table into my father and smashed my mothers arm into 18 fractures, my parents were afraid of me. I would break down so easily and get so upset that I would physically harm anything in my path and I mean anything .

My strength was unreal and I was like berserk. My body would just do this thing like flip right out and I'd even hurt animals or children if they got in my way.
Those days are LONG GONE.
I get pissed now yes, but I'm an adult and I have a lot more control, I meditate and I make sure I'm doing ok or I just leave. Even if something NEEDS my attention I will leave the room before I allow myself to snap. I have a great deal of control.

Although I still kick that darned cat off my bed pretty hard when it jumps up while I'm having sex with my wife! (the lovely one on the right of my siggy who is actually a boy)

When I take supplements or rather when I don't take birth control I am so awesome. You can slap me in the face and I won't budge!
It's a total reverse.
With all that I have done to control my rage, when I'm NOT estrogen based I have less rage to control and wow when I use my full control I can handle anything! I was told I am the most patient, gentle and admirable person in the world.
Just one simple hormone turns the tides between man and monster.

As a woman, I am a monster. I hate myself and I would kill myself if I were not me. I despise people like myself. (cruel, abusive, violent)

But as a man I am a saint. This isn't a thing I can choose. With my hormones on the male side and yes a hysto will happen ASAP and I can't wait for that... And I will be taking T all my life, can't wait for that either.

My gender is male, my hormones need to be male too. My body can stay female, I don't care. That isn't what bothers me, I'm no tranny.
This is purely for my mental stability that I must live as this person who I love. I love me when I'm a man. I accept me. Other times as a woman I hate myself and take it out on everyone around me.

People say that cort will do it for me, that I won't be a freak anymore with just some cort, yeah I won't believe that all the way. I know I'll feel healthier and THAT is great but I still won't feel RIGHT.

So moody. Moody would be estrogen, keep it away!

Like you said EQ EQ EQ! All the way I'm backing you there. And you're right, I walk around as me and thats all that matters but you know that some doctor is going to say "its just these extra androgens messing with you, try some cort and then see if you can live as a woman"
Come on you know it! I've been told it a thousand times by the family. "Try something else first before you change yourself forever, you can always be yourself without being something you are not"

So thats why we do this with my OLD name in Hammertown and my NEW name in Toronto. Make sure I get the hormones, make sure I get the cort.
Take the hormones after I get the cort or at least until all the tests are done for my CAH. They have 6-9 months to do the CAH tests before I start taking T and if I push...

Like I said I'm pregnant, planning on nursing minimum 3 months (for baby), 6 if I get my cort. (that way I lose the breasts! and the ass!)

And if you're curious as to how I smell on testosterone you're welcome to come take a sniff sometime I should be on it by Christmas.

Now I know you said they'd want to check my ABC and DEFG's what the heck does that mean?

I am no idiot but I don't have a mind for this. What are those abbreviations for and should I get tested for them?

And I just did some stupid online bias IQ BS tests a while ago and scored like 132 and I only have my grade 12 with college entry English and Arts. How the heck am I supposed to know the countries Napoleon conquered and in what years...BS! BIAS!!! If I was taught that I'd know but who the heck knows this stuff. There was a question about Cathrine the Great, who's that? I'm sorry I'm not educated boo hoo that does NOT effect my IQ LOL!

Long chins? Like that family who married their daughters out to every major country in Europe to take over all the national bloodlines that ended up with strong genetic characteristics like very long chins? I read about that a hundred years ago in my past, not literally but I read about it a long time ago that since they had married out to every family in Europe that they were starting to interbreed to keep all the known world in their family's control or something like that.
Crazy stuff I say.

Regardless if there is a 1% or a 100% chance of giving CAH to my son, who wants to wake up next to a baby who isn't responding, dead. Not I no way. I'm only having one more child and he's going to be my special little guy! I have to make sure he is ok.

Well time to clean my house, ahh lovely I'm tired but here goes nothing!

[Peter]

Hi Rycharde,

You wrote:


"Regardless if there is a 1% or a 100% chance of giving CAH to my son, who wants to wake up next to a baby who isn't responding, dead. Not I no way. I'm only having one more child and he's going to be my special little guy! I have to make sure he is ok."


Due to the dangers of salt wasting CAH, hospitals routinely screen new born children for SWCAH. It is something that you should expect to routinely happen with your baby. If you are in doubt, I would recommend asking your midwife about the health tests that your child can expect to undergo.

Peter

[neko2]

Well, I'm having some trouble following all of this, and I'm definately not going to wade into the IQ score debate, but about testing for CAH...

The advertising material of forza-t claims it to be an aromatase inhibitor. If that is true, then it would stimulate ovulation. No wonder you got pregnant.

What you're saying about taking testosterone doesn't really fit with 3B-HSD deficiency. The normal regulation of 3B-HSD type II is to act as a sort of switch at puberty to increase testosterone levels. At puberty, 3B-HSD expression is reduced, which causes the adrenal gland to grow and produce more DHEA. In other words, a slight 3B-HSD deficiency is a normal part of puberty. More testosterone causes more 3B-HSD deficiency. So if you had serious 3B-HSD deficiency, why would you take more testosterone? It would just make things worse.

If I had to guess, what you're describing sounds more like 17alpha-hydroxylase deficiency or 17,20-lyase deficiency.

Anyway, a standard test for any form of CAH is the adrenal stimulation test. This involves measuring cortisol levels, giving an injection of ACTH (or sometimes insulin or metyrapone) and then measuring cortisol levels again. This isn't the sort of test you can order on the sly though, since you need that injection.

The other test would be to measure pregnenolone, progesterone, 17a-hydroxypregnenolone, 17a-hydroxyprogesterone, and DHEA. With 17alpha-hydroxylase deficiency, there would be reduced 17a-hydroxypregnenolone and reduced DHEA. With 3B-HSD deficiency there would be reduced progesterone relative to pregnenolone. Being pregnant will affect the tests though since the placenta produces these hormones too. I wouldn't even try to interpret such test results on someone who is pregnant.

[Rycharde]

Originally Posted by Peter

Hi Rycharde,

You wrote:


"Regardless if there is a 1% or a 100% chance of giving CAH to my son, who wants to wake up next to a baby who isn't responding, dead. Not I no way. I'm only having one more child and he's going to be my special little guy! I have to make sure he is ok."


Due to the dangers of salt wasting CAH, hospitals routinely screen new born children for SWCAH. It is something that you should expect to routinely happen with your baby. If you are in doubt, I would recommend asking your midwife about the health tests that your child can expect to undergo.

Peter

I asked my midwife, I'm having a home birth, I hate the way I get treated at hospitals, they ask the stupidest questions. Well I don't need to deal with it when I'm having a baby.

They don't screen I have to buy a test for 86$.

*sigh*

[Rycharde]

Haha yeah thats why it made me ovulate! Duh why did they tell me to take it.
Would it cause my testosterone to go up? I want to understand why my testosterone was very high for a female last October.

I'm glad you understand this a little bit better with what I have said.

Still I am just starting to learn about all of these things.

I would like some information like CAH for Dummies please because you are speaking Greek to me, I don't understand much at all of what you are saying and I do have a learning disability, a screaming child and a joke being told about someone having a "fire crotch" in the background by my two friends. I really can not even think at all let alone begin to understand any of this.

I'm saying this because I'm genuinely having trouble as having ADD and who knows what else, in picking this up and understanding it.
I have tried to explain it to friends to get them to help me and they are more confused than I am. I don't understand, please help!

[neko2]

Originally Posted by Rycharde

Haha yeah thats why it made me ovulate! Duh why did they tell me to take it.
Would it cause my testosterone to go up? I want to understand why my testosterone was very high for a female last October.

Ok, first thing to understand is that estrogen is made from testosterone. Your body first makes testosterone, then an enzyme called aromatase converts it into estrogen. There are some drugs which block this process, which are called aromatase inhibitors. These substances cause your testosterone level to go up. Which is, I think, exactly what you wanted.

So... what does this have to do with ovulation? The menstrual cycle is regulated by a structure at the base of the brain called the hypothalamus. This tiny structure monitors the amount of hormones in the blood, and when it's time to ovulate, causes a signal to be sent to the ovary.

The whole point of birth control pills is to add more estrogen so you don't ovulate. If you take estrogen then the hypothalamus will think that there's already an egg and won't try to make another. By taking all this anti-estrogen stuff, you are counteracting the effect of the birth control pills.