Hello, new person with a question you've probably seen before.

[Onnineko]

Hi,

I'm Onnineko. Which means changeling spirit kitten or devil cat depending on your understanding of Japanese. :)

Recently I was diagnosed as an XXY person and I've committed considerable effort to reading everything that can be found on the internet regarding XXY and good health practices. So I was hoping you could point me in the right direction or provide some basic answers regarding basic levels of what is considered a normal level of estrogens in an XXY person?

For some reason I question the assumption by doctors that because an XXY person has male genitilia they must be males. Everything else in my life has gradually shifted to the female side, its certain obesity otherwise! This stance would be an instant unemployment card for me personally so I hope you don't mind my use of an anonymous name. :)

My question revolves around taking the least amount of any hormone for maintaining the minimum level of estrogen or hormone needed to avoid osteopenia and osteoperosis. The thought would agrue that if the difference of testosterone is over 500 points, and the difference of estrogen is 10 or 20 points, use estrogen.

But then, I've found that by balancing my diet these other issues despite a testosterone level on par with a typical female is not an issue regards of libido or fatigue or anything else. So testosterone doesn't sound like some all encompassing elixir.

thanks for any help,

Onnineko

[Onnineko]

Guess I'll answer my own questions. :) In case anyone else has questions. :)

So I was hoping you could point me in the right direction or provide some basic answers regarding basic levels of what is considered a normal level of estrogens in an XXY person?


Well this is a complex topic because XXY people are all over the spectrum. A typical female is between 40-400 pg/nl and on the same scale a male is < 20 pg/nl. An XXY person is typically anywhere from 1 pg/nl more than their testosterone to 2x or even 3x as much. The real question to ask though is what are both estrogen and testosterone levels, and every XXY person should insist on being tested for both. That the medical profession doesn't do this automatically is criminal.

So testosterone levels for a normal male (same scale) is typically 500-800 pg/nl, in the range of 400-1200 pg/nl. A female' testosterone is typically < 100 pg/nl. An XXY person is typically between 0-500 pg/nl.


For some reason I question the assumption by doctors that because an XXY person has male genitilia they must be males.


Well yes and no. There is a begining of undercurrent in the studies that is, I hope, going to karotype children at birth. So we can actually have real numbers of how many woman are naturally born XXY. All females found to date whom are XXY are fertile, and can have children. These people are considered normal. XXY males on the other hand, with the exception of mosaic XY,XXY individuals should NOT be considered male. Do you wonder why an XXY person is automatically added to the transexual female to male program to "masculinize" ? In the case of the mosaics, this makes sense, those people are male, they're fertile. In the case of non-mosaic XXY persons this program makes little sense.


My question revolves around taking the least amount of any hormone for maintaining the minimum level of estrogen or hormone needed to avoid osteopenia and osteoperosis. The thought would agrue that if the difference of testosterone is over 500 points, and the difference of estrogen is 10 or 20 points, use estrogen.


Why do I care about getting drugs? Because this is a matter of LONG LIFE and GOOD HEALTH. If your hormone levels do not have at least one of testosterone or estrogen above a magic number (pin the doctors down!) then you are going to be far more likely to drop dead from heart disease or to get osteoperosis. Both of those are nasty diseases. Thats good incentive to race to the Doctor and insist, all XXYs should know their estrogen and testosterone level for both free and total levels.

Testosterone is roughly 550 pg/nl on a 400-1200 pg/nl scale.
Estrogen is over 150 pg/nl on the same scale.

Now there is a question on what you do when you know what your levels are, the options:
1. One of your testosterone or estrogen is above the minimum level. You're okay and don't need Hormone Replacement Therapy.
2. Neither is above the minimum level. So pick the closest one, is it (check with your Doctor for quantity of hormone drugs) low enough that you can reasonably use it would no secondary effects (ie. masculinization or feminization) ?
3. Neither is above the minimum level, but you also have a gender issue or association. So pick the one that makes sense.

So this is what I did, started a low dose estrogen (25 mcg of ethinyl estradiol by patch) replacement therapy. The alternative was more than 80x as much testosterone. Now we see what happens with mind bending drugs when a woman hits menopause. That too is scary. Can you imagen the valleys of a high low cycle on testosterone, where we're dealing with many times the quantity of drug? Yuk! Thats no fun.


But then, I've found that by balancing my diet these other issues despite a testosterone level on par with a typical female is not an issue regards of libido or fatigue or anything else. So testosterone doesn't sound like some all encompassing elixir.


Testosterone is a drug, like nicotine, like heroin, take it and you feel pretty good. Take alot and try to stop and you'll find out its addictive. And it has masculinizing side effects.

The biggest and oddest lesson that I have learned is that the program that XXY people are lumped into with immediate access to testosterone is the same program that Transexual Female to Males are placed in. Now isn't that odd.

Onnineko

[turtledove]

Everything about sickcare is "odd".
=) Thanks for the numbers and advice.
Still I don't think taking hormones will fix all my problems. Years of LIES, neglect, and poisoning have given me probably irreversable problems. Too many problems.Too much downtime. I don't expect a system that loaths my existance and that has failed and harmed me repeatedly to suddenly gain even partial competence.
I don't trust any doctor to be competent enough to monitor my hormone levels properly and prescribe hormones at the right doses. How do you get a competent doctor in a reasonable amount of time? (go to med school and become one? heh) Anyway, in my experience if I mention anything I would be sent straight to a psychatrist. I've wasted too many years,too much money,and too much life with psych poisons.
They really 'got me by the balls'. The stupider, the sicker I get, the happier society is. I'm sure the plan for my distruction is carefull.
Doctors have known about me from birth and yet they ignore my suffering and poison my brain. Clearly so many medical doctors aren't real scientists. They aren't even decent people. lol rant. endless indecent discrimination.

[nephilim]

It doesn't really do much good to blame the medical establishment. The fact is with any 'rare' (I use that term lightly) condition you have to be your own advocate, ask questions and otherwise be in control of your own health program.

I had a few good doctors who were open and aware, and far more than I had to educate by doing something more than dropping my trousers. I was diagnosed prenatally as well and involved in several studies. Some which damaged my psyche and most which were otherwise helpful in determining treatments.

But I didn't begin HRT until I was in my mid-twenties. I do constantly weigh the odds between testosterone and estrogen since most of my endos agree that regardless of which HRT puruse it's better that I am on one or the other than without.

Years later, I have also dealt with doctors that align it with retardation and one that outwardly thought it was necessary to tell me that she felt that people with my condition were more likely to molest children. Of course, my emotional outburst in regards was likely due to my condition as well. I filed several complaints.

It sucks deal with people that are less inclined to education themselves beyond a dictionary reference.

By their interpretation of the information (if you've googled any debates, that should be a fair reference point), most people expect those under XXY or even XX to have language disorders, learning disabilities, small anatomy (Some people seem to be disappointed when it's not true.), breasts, moodswings that make pms look like a day in the park, immaturity, be completely sterile and a fair amount of people try to link it to being gay. Because hey, they're certainly not 'real' men. Yeah, rip roaring testosterone and semen that'll jump out of a bucket for guy is a sure sign of heterosexuality.

And right now I find it coming up again in various places I chat or the occasional class I am actually awake through.

People don't know jack. I don't care much for the support sites written by well meaning parents who focus on learning disabilities, social aspects and reassuring or establishing 'proper' gender roles. Scare the gender disorders and queer away with speech therapists and contact sports. And still far before roleplaying, I've found most XXY/XX males are heterosexual and there was handful that came out afterwards, confused as to who they were as men, some just crushed by the concept of a much lower chance of producing offspring, prior to their diagnosis had they not known they may have lived the rest of their lives as heterosexual males.

I think the whole social concept of masculine gender has been so twisted by the social definitions of the male sex. Sex identification by karyotype. The identity of maleness is far more social and culturally concerned and often associated with aesthetics. But to continue on my twisted tirade, ranting, raving, misbehaviing...

Where was I yes, I don't care much either for doctors and even current researchers that get or base their primary information from an outdated study that should be illustrated as a bad control pool. Prisons and Mental Institutions? And then ignoring probably half the other issues they've suffered and lumping a lot of those conditions under it. Yeah and everyone with small ears is a serial killer.

And with various media outlets educating the public... Education and awareness is great but it's still treated within the mainstream as a sideshow attraction.

so half-arsed people that come up with a B&W concept that my sexuality (not just who I sleep with) and identity is a fraud - not only to myself but the people I choose to get involved with (as if I should be required to introduce myself as XX guy.). It's alright I am like this but I am playing with their sexuality by not telling them even though by all aesthetics and social concepts I am presented as male, regardless of initial remarks of my medical records. If it looks like a duck, quacks like a duck and tastes like chicken... where was I going with this...

For the most part it doesn't affect my daily life in the social scale. You can find community just about anywhere... It's only odd if you stay in one place expecting the scenery to change.

[Peter]

Welcome to Bodies Like Ours. You said that your post was going to be a rant, but it was such a nice rant in the end. Thanks for sharing your thoughts. I found your reporting that XXY people are expected to be short humorous, because due to the role of testosterone in limiting growth, many XXY people are anything but short. My XXY friends are often gentle giants.


Peter

[prince....ss?]

Hello nephilum,

I enjoyed you rant. Thanks for sharing. I’m not xxy but it appears we have much in common with the social concepts of what is man and what is woman. So I share with your frustration.

You say for the most part it doesn’t affect your daily life in the social scale. Unfortunately it’s the part that “most” doesn’t cover is the real bugger.

By the way welcome to BLO

[Priestess]

Ah, hello nephilim

Welcome to the forums. I'm sure we'd be offering our christmas special, if we had one. Maybe intersex coffee mugs? I hope you'll stay a while.

Your rant sounds a little like what I'd rant about, a distaste for the medical community that's so malicious. I was curious about the places where you mentioned xx males, it wasn't clear whether you were saying you're an xx?

You see, I've gotten curious about xx-males, which I guess is called "de la Chapelle's" syndrome. I can't seem to find out much of anything about it except that it exists, and that some cases are caused by the "x" chromosone resembling a "y" enough to cause male prenatal development and screw up cheap automated dna-tests, and that other cases are just unexplained. And that there apparently are cases of partial Chapelle's, resulting in varying degrees of full hermaphrodism, which is of interest to me personally.

I've got lots of medical evidence of my problems, which the docs claim is a "couldn't be possible". But maybe partial Chapelle's might be a reason. A lot of other explanations have already been eliminated. Though chimerism is still an unlikely candidate.

[nephilim]

Ah, hello nephilim

Your rant sounds a little like what I'd rant about, a distaste for the medical community that's so malicious. I was curious about the places where you mentioned xx males, it wasn't clear whether you were saying you're an xx?
.......
I've got lots of medical evidence of my problems, which the docs claim is a "couldn't be possible". But maybe partial Chapelle's might be a reason. A lot of other explanations have already been eliminated. Though chimerism is still an unlikely candidate.

That I am but to US docs I am thrown in every other boat. I am a further mutation to the scheme of what they accept as the XX factor.

Sad to say I learned more about my condition through information on tortoise-shell cats than I have through traditional medicine. Breeders are quite helpful and often interested in the subject. It's a great and often untapped resource for us.

Typically in mosaicism featuring more XX than Y placement, 1% qualifies enough to toss under the XXY variants. The problem with XX males without the Y factor comes to SRY play. And that's opened up a lot of confusion for researchers and doctors, which have a difficult time placing us in a suitable category, they try a little too hard kind of giving the plight that all XX males are true or partial intersexuals (outside of genetic coding).

Ugh. I was hoping my mind would work faster this morning and I'd have enough time to type out more information and where I am on the scale. But I've got a plane to catch...

there's a few studies that have made light in US studies the research listings are listed through the gov medical site. But worldwide and using an online translator can sometimes be helpful to pick up information. I'll try to get back to these posts as soon as I can but it may be a week or two.

I am short on time and the us studies are just so dull.... not to mention they far too weary to say XX as typically it's still viewed as physical intersexed. So like most labels the problem isn't the label but the definition.

"Clinical and Genetic Study of a XX (SRY negative) Male.

Rima Dada, M. E. Ahmad, Rashmi Talwar and Kiran Kucheria*

Genetics Division, Dept. of Anatomy,
All India Institute of Medical Sciences, New Delhi-110029, India"


MOSAICISM 2: GENDER ANOMALIES
1996 - 2005 Sarah Hartwell
(there's better cat info... although some of the best info dealing with male tortise mutations were in french.)

(and thanks to everyone else for the welcome) ...

Gotta run. Hopefully it'll be a low security day.

[Priestess]

(and thanks to everyone else for the welcome) ...

Gotta run. Hopefully it'll be a low security day.


Ok, and have a good flight. I hope you won't mind if I pester you with questions later :embaresse

[Onnineko]

But I didn't begin HRT until I was in my mid-twenties. I do constantly weigh the odds between testosterone and estrogen since most of my endos agree that regardless of which HRT puruse it's better that I am on one or the other than without.

so half-arsed people that come up with a B&W concept that my sexuality (not just who I sleep with) and identity is a fraud - not only to myself but the people I choose to get involved with (as if I should be required to introduce myself as XX guy.). It's alright I am like this but I am playing with their sexuality by not telling them even though by all aesthetics and social concepts I am presented as male, regardless of initial remarks of my medical records. If it looks like a duck, quacks like a duck and tastes like chicken... where was I going with this...


Let me guess.. its a duck? :) Sounds like you've had an interesting life. Aren't you glad it wasn't dull? I absolutely dread the days when nothing happens, and I'm just not up to making things happen. O.o .. :) However, having experienced the idea of gender dysphoria .. I might suggest the Doctors at least have an inkling of what is going on here. Still I cannot give credence to their solutions.

It sounds as if you have as much faith in the instutition of the "Medical Establishment" as most every one else here. That is essentially none, and a healthy dose of cynicism.

I'm curious though.. :) Was it a duck?

[Dianne]

If it looks like a duck, quacks like a duck and tastes like chicken...

I LOVE IT! That is going up on my office wall!

[nephilim]

It sounds as if you have as much faith in the instutition of the "Medical Establishment" as most every one else here. That is essentially none, and a healthy dose of cynicism.

I'm curious though.. :) Was it a duck?


I was trying to aim towards giving them more credit when I initally started but that theory long left the scene once I began typing. Cheerfully Cynic.....

And to avoid killing the tortoiseshell cat... It was a Turducken - the official holiday dinner of IS omnivores and meateaters everywhere. (Yep, I am licensing it for future trademarks.)

[Priestess]

I was trying to aim towards giving them more credit when I initally started but that theory long left the scene once I began typing. Cheerfully Cynic.....

And to avoid killing the tortoiseshell cat... It was a Turducken - the official holiday dinner of IS omnivores and meateaters everywhere. (Yep, I am licensing it for future trademarks.)

Hello Nephilim,
I don't quite understand what you mean, but it's good to see you back. Maybe I can ask you questions sometime? I hope you had an enjoyable trip.