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Klinefelter Syndrome?

Started by CoolGuy, September 15, 2014, 03:53:42 PM

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CoolGuy

I want to know what is Kinefelter Syndrome and how does it affect how the person feels? I have it but don't quite understand what it is or how it affects me. I was altered at birth lived as a girl for 35 years and felt as  if I am in the wrong body. I was born a boy. I feel like a boy and am going to be a boy again. I identify as a boy in spite of how I look. I would like answers to my questions and may even ask some more later after you explain the answer to these questions to me.
"Do unto others as you would have them do unto you"
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Jessica Merriman

There is a site called "North American Intersex Society" or something close to that with information on intersex conditions. I do not know if it is still up or updated, but I got a lot of basic information there myself. Otherwise a quick Google search will list several other places. There are several types of Klinefelters so you would have to see which one if any apply to you.  :)
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CoolGuy

The type I have is 47 XXY. I want to know how other people with this condition feel about themselves, their lives
and about how society views them.
"Do unto others as you would have them do unto you"
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HughE

Quote from: CoolGuy on September 15, 2014, 03:53:42 PM
I want to know what is Kinefelter Syndrome and how does it affect how the person feels? I have it but don't quite understand what it is or how it affects me. I was altered at birth lived as a girl for 35 years and felt as  if I am in the wrong body. I was born a boy. I feel like a boy and am going to be a boy again. I identify as a boy in spite of how I look. I would like answers to my questions and may even ask some more later after you explain the answer to these questions to me.
Klinefelters syndrome is the name that's commonly used for people with an XXY karyotype (as opposed to the XY karyotype that males ordinarily have). Either the egg cell you developed from had two X chromosomes (normally it would have one), or the sperm cell had an X and a Y (when it should have one or the other, not both). The result is that you've got two X chromosomes and one Y, as opposed to the one X and one Y that ordinary males have.

The main effect of this is that it interferes with testicular development so that your testicles don't grow as large as they do in ordinary males, and they don't always produce enough testosterone during the time you're developing in the womb for you to fully develop as male. Basically it's a type of intersex condition, and it can result in you being born with "ambiguous" genitals, and it can also result in you having a mixed or female gender identity (although from the sounds of it, that didn't happen in your case!). Despite all this, most XXYs seem to get on reasonably OK living as male, in fact it usually isn't even detected until they go in for fertility testing when their wife or partner fails to get pregnant. The ones I've chatted to are all living as male, but they seem to mostly have a gender identity that's not really fully male, if that makes sense.

If you think you want to go down the male route, probably your best bet is to talk to some of the FTMs on here, and find a doctor who'll prescribe you testosterone so you can see if it's the right thing for you or not. Presumably you're on estradiol at the moment, seeing as you were surgically assigned female?
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Jessica Merriman

I got nailed with both 47XXY and exposure to DES. I never had a chance at all.  :-\
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Sydney_NYC

Quote from: Jessica Merriman on September 15, 2014, 05:48:02 PM
I got nailed with both 47XXY and exposure to DES. I never had a chance at all.  :-\

Same here 47XXY (Mosaic) and DES exposure. There were some studies I came across a while ago suggesting that some intersex conditions (like Kleinfelter's) can be caused by DES exposure. The Kleinfelter's is also why I'm taller than anyone else in my family. My mom it 5'11, Father 6'3", younger brother 6'4", and me at 6'7"
Sydney





Born - 1970
Came Out To Self/Wife - Sept-21-2013
Started therapy - Oct-15-2013
Laser and Electrolysis - Oct-24-2013
HRT - Dec-12-2013
Full time - Mar-15-2014
Name change  - June-23-2014
GCS - Nov-2-2017 (Dr Rachel Bluebond-Langner)


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CoolGuy

I have klinefelter syndrome and I want to know how you all felt about yourselves, how others looked at, how society saw you and how your parents felt or said about you or to you, also how you delt with this before you had SRS? I was male at birth and altered. I have been living as a girl for 35 years. My DNA and brain are male, I feel like a boy and want to be one again. The man I called dad isn't actually my father had me altered just because he did not like the fact I looked like a boy and he wanted a girl he had me altered. It really sucks that he did that because I grew up and felt like I am in the wrong body all my life because of it. Any coping techniques I can use before and after SRS would be appreciated.
"Do unto others as you would have them do unto you"
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aross1015

I'm confused about why a doctor would surgically alter a male appearing baby on the whim of a step father.
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Sebryn

I am confused as well after doing a bit of research about Klinefelter syndrome. From what I've read it's a gene syndrome that has to do with chromosomes and not physical attributes, unlike with intersexed children, right? Symptoms don't appear until puberty usually...

Maybe some more info would help?

There are also a lot of threads on coping/dealing with being trans on this forum, feel free to read some earlier threads and maybe do a search? A lot of the answers to your questions vary by person.
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Felix

Quote from: aross1015 on September 15, 2014, 09:42:37 PM
I'm confused about why a doctor would surgically alter a male appearing baby on the whim of a step father.
This used to be a lot more common than it is now, usually with babies that didn't have completely "normal" bodies. Obviously it's clear now how damaging it can be to reassign children like that, but there are still a ton of people whose gender assignment was chosen for the convenience of the parents or the surgeon.
everybody's house is haunted
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HughE

Quote from: Sydney_NYC on September 15, 2014, 06:20:09 PM

Same here 47XXY (Mosaic) and DES exposure. There were some studies I came across a while ago suggesting that some intersex conditions (like Kleinfelter's) can be caused by DES exposure. The Kleinfelter's is also why I'm taller than anyone else in my family. My mom it 5'11, Father 6'3", younger brother 6'4", and me at 6'7"

I think it's more likely that DES makes what would have otherwise been a very mild degree of intersexed development much worse, which then triggers testing to determine the cause. The testing picks up the XXY karyotype, which then immediately gets the blame for something that is actually mainly due to DES. That's what I think tends to happen in that situation anyway.

The majority of people with an XXY karyotype live their entire lives without ever realising that they're in any way different from ordinary males. It's usually only detected as a result of fertility testing, however once you know you have it, when you look back on your life, there'll probably be subtle signs there of you not being as male as most men.

One thing I've heard is that there are some doctors who are telling trans folk who have signs of being intersexed that they're Klinefelters mosaic, when actually the gene testing came back XY. XY/XXY mosaic is a lot rarer than a regular XXY karyotype, and it generally results in a milder degree of intersex, in what is already usually a relatively mild kind of intersex condition. In other words, I'd be very skeptical of a Klinefelters mosaic diagnosis without gene testing that confirms it. DES on its own can produce pretty much all the symptoms that you get from being XXY, such as long, slender arms and legs, gynecomastica etc. Visually I look quite similar to someone who's XXY, the difference is that, in my case at least, it's definitely secondary hypogonadism, whereas Klinefelters causes primary hypogonadism. The other difference is that I'm a very polarised person, there are some parts of my identity and psychology that are completely male while other parts are completely female, whereas with XXY the impression I get is that you generally end up with people who are more an intermediate between male and female all the way through.
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CoolGuy

Quote from: aross1015 on September 15, 2014, 09:42:37 PM
I'm confused about why a doctor would surgically alter a male appearing baby on the whim of a step father.
It wasn't a stepfather. The person I have always known as my dad switched 2 babies at birth, so the man I have called dad all my is not my birth father or even my dad at all. Mike stole from another couple because he thought his baby was disabled. I have just found my family and I am just getting to know them now. I happened to been talking to my Dad/birth father and he and I realized that we are father and son. He has done all the legal work for me to get me back and for my coming transition. I hope this answers your question.
"Do unto others as you would have them do unto you"
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madirocks

Sorry, just returning to these forums and saw this thread. I'm 47,XXY and have ovo-testes.

I'd say things for me have been very emotionally conflicting. I've actually just recently come to a point to where I absolutely must undergo corrective surgery. The struggle is that my family and friends have always thought of me as male (albeit not a very good one). That's where the struggle comes in. In a society where that gender and sex are seen in black and white, though there's really so much awesome grey, it's hard for people to come to grips with reality and accept the person for who they are.

Honestly, I don't like how my life has been nor how society views me as a person, let alone my condition.  ???
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Wynternight

Quote from: Jessica Merriman on September 15, 2014, 05:48:02 PM
I got nailed with both 47XXY and exposure to DES. I never had a chance at all.  :-\

You and me both. :(
Stooping down, dipping my wings, I came into the darkly-splendid abodes. There, in that formless abyss was I made a partaker of the Mysteries Averse. LIBER CORDIS CINCTI SERPENTE-11;4

HRT- 31 August, 2014
FT - 7 Sep, 2016
VFS- 19 October, 2016
FFS/BA - 28 Feb, 2018
SRS - 31 Oct 2018
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evan114

I just found out today I am 47,XXY. I was female assigned at birth but identify as FTM. I have never "felt female." I wonder if my chromosomal abnormality has anything to do with my transexual identity.
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JLT1

Wow,

Missed this one. 

The majority of individuals with 47XXY will appear anatomically male and most will remain male throughout their life.  There may be some female characteristics but in general, not much.  However, some will have significant female characteristics.  I do not know if there is an increase in the number of MTF transgender individuals with Klienfelter's.

Now, if mitoses occurs early on in the development process, all bets are off.  The individual can end up with a significant number of cells that are XX or XY in addition to XXY.  Depending on how things went during development, the individual can be fully male, fully female, in between or one of several types of a hermaphrodite. The whole problem here is that the standard technique doesn't often catch all the chromosomal types. 

I'm sorry this has happened to anyone. 

Hugs,

Jen
To move forward is to leave behind that which has become dear. It is a call into the wild, into becoming someone currently unknown to us. For most, it is a call too frightening and too challenging to heed. For some, it is a call to be more than we were capable of being, both now and in the future.
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Illuminess

If I could afford it I'd like to know the exact medical details of my genetic makeup. All I can do is speculate based on what is typical for someone XXY (mosaic). I have androgen insensitivity in most of my body except head and face, although my facial hair is sparse and lighter than my top hair; I have wide hips; I have the 2D:4D digit ratio thing; I have a slight case of gynecomastia; I look younger than my age; I was also born with Asperger's, and there's a pretty good chance I'm infertile.

Klinefelter's Syndrome is often observed in extreme cases, so mosaic ones seem to go under the radar. What makes me curious is that even though being XXY is unconnected to trans* identity it seems to be comorbid, anyway. Not in all cases, but many. But then genetics aren't so easy to pigeon-hole as one thing or another. I'm sure there are things that do connect the two that just aren't determinable yet.
△ ☾ Rıνεя Aяıп Lαυяıε ☽ △

"Despair holds a sweetness that only an artist's tongue can taste."Illuminess
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HughE

Quote from: sororcaeli on October 18, 2014, 12:55:25 AM
If I could afford it I'd like to know the exact medical details of my genetic makeup. All I can do is speculate based on what is typical for someone XXY (mosaic). I have androgen insensitivity in most of my body except head and face, although my facial hair is sparse and lighter than my top hair; I have wide hips; I have the 2D:4D digit ratio thing; I have a slight case of gynecomastia; I look younger than my age; I was also born with Asperger's, and there's a pretty good chance I'm infertile.

Klinefelter's Syndrome is often observed in extreme cases, so mosaic ones seem to go under the radar. What makes me curious is that even though being XXY is unconnected to trans* identity it seems to be comorbid, anyway. Not in all cases, but many. But then genetics aren't so easy to pigeon-hole as one thing or another. I'm sure there are things that do connect the two that just aren't determinable yet.

The way Klinefelters produces intersexed development is by causing primary hypogonadism, i.e. it interferes with testicular development so that your testicles don't grow to full size during your prenatal development, and are unable to produce the full male quota of testosterone. They do generally produce enough so that you end up with male genitals, however it seems that a fair number of XXY's end up with a brain that isn't fully male. Amongst those with KS I've chatted to, nearly all of them seem to have a gender identity that isn't properly male. On a KS message board I was hanging out on a fair bit a year or so ago, some of the people there have transitioned, and I'm pretty sure that being XXY does make it more likely that you'll be trans (although I don't know of any studies showing this off the top of my head).

The thing about XY/XXY mosaic is that it can only affect your sexual development if the XXY cells get into your germ cell line and go on to affect your testicular development. Otherwise you'll develop fully as male, and there'll be no indication that you're in any way different from ordinary males unless the mosaicism gets into your skin or hair (in which case you might have patches with a slightly different coloration). The sex you develop as is entirely hormone driven, and depends on whether you have testicles churning out testosterone or not during your prenatal development.

There is a condition called tetragammetic chimerism in which nonidentical twin embryos fuse together to form a singe embryo early in prenatal development, and 50 percent of the time this happens, the twins are brother and sister. Nonetheless, people with the condition usually aren't intersexed at all, instead they end up developing fully as whichever sex the cell type that went on to form the germ cell line happened to be. The only time it can be a cause of intersex is if both male and female cells get into the germ cell line. Usually that doesn't happen though, and most of the people with the condition are just ordinary men or women who live their entire lives never knowing that they're actually made up of a mixture of male and female cells. This is what I initially thought must have happened to me, because I have a very strong internal sense of being partly male and partly female. As it turns out, that's not what happens at all with mosaicism, usually you end up with a person who is fully male or fully female.

It's highly counterintuitive, but the sex you develop as is entirely determined by what hormones are present during your prenatal development, not on whether you have a Y chromosome or not. I don't know whether you've read any of the stuff I've been posting on here over the last year about medical hormones as a cause of transsexuality, but this is why I think it's a really bad idea to be giving pregnant women hormones, and why I think the problem of transness caused by hormones in pregnancy is likely to go well beyond just DES.

I've got the same thing you have of having a feminine body structure. It's something that occurs because you've been producing below normal male levels of testosterone ever since you were born. Klinefelters is one thing that can cause this, but so can just about any other cause of intersex.

If you've had a full set of lab work done prior to starting on hormones, you can actually gain a fair idea of whether you have Klinefelter's or not from it. See my comment here:
https://www.susans.org/forums/index.php/topic,175351.msg1543641.html#msg1543641

Primary hypogonadism (e.g. Klinefelters):
Total and free testosterone low, LH and FSH high

Secondary hypogonadism (e.g. Kallman's; DES):
Total and free T low, LH and FSH low

Androgen insensitivity:
Total and free T normal to high, LH and FSH normal to high

I'd better mention that the average total T in healthy 20 to 40 year old men is about 700 ng/dl, however, most doctors are likely to tell you that even testosterone levels far below that are "normal". I think the problem is that there are millions upon millions of men now approaching middle age who were exposed to drugs such as DES in the womb. One of the things that can go wrong when you're exposed to these drugs is that you end up trans, however, I think a much more common side effect is that you end up identifying as male but have low testosterone, and your T levels continue to fall as you get older until it starts to seriously impact your health by the time you reach middle age. I think doctors must now be seeing a lot of these patients, but nobody wants to admit that a massive disaster has taken place with these drugs, so they've set the limits of what counts as "normal" very wide.
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Illuminess

That's some great info.

QuoteThere is a condition called tetragammetic chimerism in which nonidentical twin embryos fuse together to form a singe embryo early in prenatal development, and 50 percent of the time this happens, the twins are brother and sister. Nonetheless, people with the condition usually aren't intersexed at all, instead they end up developing fully as whichever sex the cell type that went on to form the germ cell line happened to be. The only time it can be a cause of intersex is if both male and female cells get into the germ cell line. Usually that doesn't happen though, and most of the people with the condition are just ordinary men or women who live their entire lives never knowing that they're actually made up of a mixture of male and female cells. This is what I initially thought must have happened to me, because I have a very strong internal sense of being partly male and partly female. As it turns out, that's not what happens at all with mosaicism, usually you end up with a person who is fully male or fully female.

My mother told me that there were originally two heartbeats somewhere at the beginning of her pregnancy, but then it was just one: me. I often joke that I absorbed my sister. I guess I could say that I feel a bit androgynous, but it's probably more like 30% M / 70% F. I definitely would like to find out all of the hard data on my development, but overall, I'm just glad I have a body that isn't masculine. I haven't started on HRT yet, so I'm eager to see how that affects me physically with what I already have going on naturally.
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"Despair holds a sweetness that only an artist's tongue can taste."Illuminess
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SweetJean

HughE,  Amazing amount of information described very clearly. thank you.
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