Community Conversation => Intersex talk => Topic started by: Anindya on April 24, 2013, 07:53:27 AM Return to Full Version

Title: XXY, any here and what of it ?
Post by: Anindya on April 24, 2013, 07:53:27 AM
And so I have just joined to find out more by hopefully communicating with those I understand could have a similar mind, for I am an xxy male, but I don't have Klinefelter's Syndrome and so am not in receipt of medication supplement or otherwise and I have no desire to be any more male than I actually am, where perhaps I would like to be less.

But is xxy inter sex - so many authorities say it's not ?

And of the xxy's here how far do you go towards the female, have you altered yourself physically in any way ?
Title: Re: XXY, any here and what of it ?
Post by: Jamie D on April 24, 2013, 10:54:07 AM
We have several members who report that they have been tested and evidence XXY Syndrome.

But I have always heard it referred to as "Klinefelter syndrome."

If you scan the topics on this board you will be able to identify some of them.
Title: Re: XXY, any here and what of it ?
Post by: Anindya on April 24, 2013, 01:44:26 PM
XY that is normal males can get Klinefelter's Syndrome and it is a fact not all XXY males have it and there is some discussion out there suggesting the Klinefelters should be separated from XXY because, well as said, not all XXY's get it and I am one of them and I don't have it despite myself being 47,XXY.

But as KS and XXY is not a life threatening condition there is not that much research into it and much of what there is, is decades out of date.

But from Genetic.org; [url]http://www.genetic.org/Knowledge/WhatareXamp;YChromosomeVariations/Tellmeabout47,XXY.aspx/url]

Are 47,XXY and Klinefelter syndrome the same thing?


If all persons with the set of symptoms described by Dr. Klinefelter had an extra X chromosome, or if all persons born 47,XXY had the symptoms described by Dr. Klinefelter, then the two terms would be interchangeable.  However, this is not the case.  Consider the following two questions -

Does everyone with Klinefelter syndrome have an extra X chromosome? The answer is "No." In 1985, Dr. Klinefelter published an article in which he summarized what had been learned about the condition during the more than 40 years since his having first identified the condition.  Dr. Klinefelter wrote: "the syndrome has been found to be a chromosomal disorder, in which there is an extra X  chromosome in 80% of the patients." (4)

Does everyone born with an extra X chromosome have Klinefelter syndrome? This answer is "No." Females born with an extra X chromosome are Trisomy X; and while all males who are born with an extra X chromosome are at risk of developing Klinefelter syndrome, for currently unexplained reasons, there is broad phenotypic variability and many of these 47,XXY inviduals may not develop one or more of the distinguishing signs and symptoms of the condition.
Title: Re: XXY, any here and what of it ?
Post by: Joanna Dark on April 24, 2013, 04:54:54 PM
When I was 9 or 10 I got my hands on a medical dictionary and I remember convincing myself that I had Klinefelter's Syndrome or Turner Syndrome (those were the only two gender-related disorders in there) but then it also said that they almost always tall and bad at vocabulary-related subjects. And I am like 5'6 and scored a 720 on the Verbal portion of the SATs so that ruled that out. Are you tall? I used to hope I was intersex as i thought that would give me permission to transition and get SRS but now I think it does not matter. IDK how this helps you but I just wanted to comment because it brings me back to when I really little trying to figure out some reason for why I am the way I am.
Title: Re: XXY, any here and what of it ?
Post by: Anindya on April 25, 2013, 08:29:05 AM
Tall, well six foot  and 160 pounds in weight and undeveloped, some of the stuff that was supposed to happen in puberty didn't- chest didn't expand out, so an adolescent look, but long thin arms and no muscle development. I am 44 now and still people younger than me talk down to me as they think I am younger than they, where most believe me to be in my mid to late twenties or at worst early thirties but no way anywhere near my true age.

But this trans stuff, it is constantly in my mind but it's not that I wish to live as a woman because the way I do live is already a bit of both where I do many feminine things regards body care and various other what is usually thought of as feminine activities where some things more now than in the past because well I know what I am at last as it was only in the last few years I had the karyotype and so I am allowing my natural self at last as what I felt compelled to do was not deviant at all, it was just me. But one thing is in my mind of the trans stuff is for some obscure reason I desire breasts, not hefty ones but more the smaller size as I see the growing of those to make me physically what I feel to be as well, what I guess to be as is in between male and female, where I am passive to both genders, I desire to help others as it seems it is my worth.

But I do have some learning difficulties, physically, what I call directionally stupid-dyspraxia, some attention deficit and  some communicational difficulties where asperger's syndrome has been diagnosed in the past, but I know it is not AS, it is just something that sometimes comes with that extra x. But my IQ has been measured at 139 and my EQ as above average.

But @ Joanna Dark and others, communication is good, people write on topic or off because they feel the need to say and so I say, feel free to say, you are welcome as ar as I am concerned.
Title: Re: XXY, any here and what of it ?
Post by: how-audrey on July 08, 2013, 11:34:44 PM
I was diagnosed with XXY/Klinefelter's when I was about 14. Around that time I was developing breasts, though they didn't get very far before I was put on testosterone HRT and stopped that in its tracks. I kept up with the medication for 7 years until I hit a breaking point in my life and started learning about transitioning, gender dysphoria, etc. After that, I became a bit less happy to continue with it and got my shots closer to every 3-6 months instead of every two weeks. Going from not having a male level of T in my body to my body's normal levels, I know for a fact that testosterone isn't for me. At this point, I don't plan on taking renewing that supply of hormones and aim towards starting estrogen HRT this year. I've heard that people with XXY are more receptive of HRT, but I'm not sure how 7 years of steady testosterone would affect that for me.

I feel like XXY is generally not considered an Intersex condition medically, but I feel that it is. I wish there was some sort of gender therapy that was part of the treatment for XXY before being thrown on testosterone without even a consideration of an alternative.
Title: Re: XXY, any here and what of it ?
Post by: Jamie D on July 09, 2013, 01:14:23 AM
Audrey, XXY/Klinefelters falls in the list of intersex conditions published by the ISNA.

http://www.isna.org/faq/conditions (http://www.isna.org/faq/conditions)
Title: Re: XXY, any here and what of it ?
Post by: Qwenya on July 27, 2013, 01:57:08 PM
Quote from: Anindya on April 24, 2013, 07:53:27 AM
And so I have just joined to find out more by hopefully communicating with those I understand could have a similar mind, for I am an xxy male, but I don't have Klinefelter's Syndrome and so am not in receipt of medication supplement or otherwise and I have no desire to be any more male than I actually am, where perhaps I would like to be less.

But is xxy inter sex - so many authorities say it's not ?

And of the xxy's here how far do you go towards the female, have you altered yourself physically in any way ?

You are not alone.
Title: Re: XXY, any here and what of it ?
Post by: JLT1 on July 27, 2013, 02:17:38 PM
University of MN, UCLA and Stanford all have good genetics groups.  It might be worth a call for some insight into current research.  I'm traveling and my notes are at home or I could give you names and numbers....

There have been some advances in research that either haven't made it to practice or are just starting.   However, the research is limited.  I'm not XXY but I did look into the scientific literature about XXY as it is loosly related.  There is just to little work on what is up with me. :(


Title: Re: XXY, any here and what of it ?
Post by: Rosa on July 27, 2013, 03:08:14 PM
From what I have read Klinefelter's is another name for xx  although there are different sup variants where one could have 3 or 4 X's. Of course the symptoms can very also. My endo told me that I most likely  have Klinefelter's but he did not do a genetic test. I have the typical physical characteristics, but those characteristics are typical of many people with hypogonadism regardless of the cause.
Title: Re: XXY, any here and what of it ?
Post by: Joanna Dark on July 29, 2013, 02:35:44 PM
Are you tall, lanky and bad at vocabulary? Apparently being bad at vocab is a symptom of Kleinfelter's, which disqualfies me. I convinced myself I had it when I was 10 but I was then I found out about the vocab and since I am ot only good at it but exceptional (730 on the verbal SATs) I prolly don't. I told myself after that I am prolly XXY. But in reality I am prolly regular XY but it doesn't really make a difference and the clinic told me that there are symptoms but it doesn't change treatment so they won't pay. And really it doesn't matter to me anymore. I am what I am.

But Kleinfelter's and XXy are compltely different things.
Title: Re: XXY, any here and what of it ?
Post by: Devlyn on July 29, 2013, 02:42:06 PM
Quote from: Joanna Dark on July 29, 2013, 02:35:44 PM
Are you tall, lanky and bad at vocabulary? Apparently being bad at vocab is a symptom of Kleinfelter's, which disqualfies me. I convinced myself I had it when I was 10 but I was then I found out about the vocab and since I am ot only good at it but exceptional (730 on the verbal SATs) I prolly don't. I told myself after that I am prolly XXY. But in reality I am prolly regular XY but it doesn't really make a difference and the clinic told me that there are symptoms but it doesn't change treatment so they won't pay. And really it doesn't matter to me anymore. I am what I am.

But Kleinfelter's and XXy are compltely different things.

This is too funny!
Title: Re: XXY, any here and what of it ?
Post by: Joanna Dark on July 29, 2013, 09:06:21 PM
Quote from: Devlyn Marie on July 29, 2013, 02:42:06 PM
This is too funny!

I'm glad I made you laugh lol hehe!!
Title: Re: XXY, any here and what of it ?
Post by: shufflinggiraffe on August 01, 2013, 08:46:58 PM
Quote from: how-audrey on July 08, 2013, 11:34:44 PM
I was diagnosed with XXY/Klinefelter's when I was about 14. Around that time I was developing breasts, though they didn't get very far before I was put on testosterone HRT and stopped that in its tracks. I kept up with the medication for 7 years until I hit a breaking point in my life and started learning about transitioning, gender dysphoria, etc. After that, I became a bit less happy to continue with it and got my shots closer to every 3-6 months instead of every two weeks. Going from not having a male level of T in my body to my body's normal levels, I know for a fact that testosterone isn't for me. At this point, I don't plan on taking renewing that supply of hormones and aim towards starting estrogen HRT this year. I've heard that people with XXY are more receptive of HRT, but I'm not sure how 7 years of steady testosterone would affect that for me.

I feel like XXY is generally not considered an Intersex condition medically, but I feel that it is. I wish there was some sort of gender therapy that was part of the treatment for XXY before being thrown on testosterone without even a consideration of an alternative.

I too had been diagnosed Klienfelter at 14and started testosterone treatment soon after. I lasted 12 years before discovering something wasn't right. I've been in counselling for 3 years and my psych has finally seen the light, he has now diagnosed me Klienfelter Syndrome GID an intersexed condition. I have been given the consent to begin HRT im 35 married no kids. I too wish there were something more when the decision was made for me.. I suppose however that at 14 who makes the decsions?? Its taken an awful lot for me to come out and im still struggling with the idea. However I just know what im doing now is wrong....weird. simon
Title: Re: XXY, any here and what of it ?
Post by: Joanna Dark on August 01, 2013, 09:57:45 PM
Did you have GID when you were 14 and diagnosed with KS? Or as has it occured or come to the surface more recently? Just wondering. I'm curious about intersex conditions. Also, how did they determine you have it? I know XXY males with KS are tall but XX males tend to be small and skinny.

I mean I've alwasy felt there is something wrong with me hormonally: I'm very small for a male in both height and weight as well as overall build, I didn't masturbate until 16, which is well after most males start, I have a very low libido but not now that I am on HRT, I started having an elevated chest at age 11 and by age 17 had A cups and never took my shirt off, my voice never lowered considerably. Plus people ask me stuff about being a hermaphrodite or transsexual all the time since I was a kid so i know it's not in my head. I'm pretty andro all around and look like the females in my family with little resemblance to any males. Also I had problems with bedwetting which I read something like 47 percent of intersex males do at a young age in one study. One thing is fo sho my body did not masculinize fully.

But I guess it doesn't matter. I'm just interested in hearing how he came to your diagnosis and when you started to experience GID. My first expereince was at age 4 when I wanted to wear my mom's lipstick and my first crossdressing episode was ay age 6 when I used to wear old dresses of my sisters. My age 8 i refused to use the boy's room and tried to use the girl's room. This caused many emotional problems.
Title: Re: XXY, any here and what of it ?
Post by: JLT1 on August 01, 2013, 11:39:26 PM
OK,  people with Klinefelter's Syndrome typically have most of their karyotype being 47,XXY and about 20% have higher order mosaicism such as 48,XXXY or 49, XXXXY.  Typically, the higher order the mosaicism, the more the brain (e.g. speech) is affected.   The key point to this post is the people with "most" of the karyotype being 47,XXY. 

My favorite article on this, what I'm about to describe, was published in the Journal "Lancet", (p 494, 1965, Letters to the Editor, Lonsdale).  While that article focused on a hermaphrodite I don't want to address that focus. I want to focus on the genetics explained in that article because that concept could have broad applicability to those identified with Klinefelter's and perhaps even some who have not been diagnosed with Klinefelter's. 

In the article, the patient had the following karyotype: of 64 cells analyzed, 49 were 46,XX, 8 were 46,XY and 7 were 47,XXY.  It was hypothesized that "this mosaicism could perhaps result from an initial XXY zygote with posteriorly a double mitotic loss of an X and a Y chromosome." This double mitotic loss would occur during embryogenesis. I have also seen this same explanation for other distributions in other journal articles and in one genetic textbook and I have seen several other papers on people with a similar profile in their karyotype (e.g. and more : Exp Mol Pathol. 1999 Sep;67(1):50-, although they did not include an explanation).  I also noted more than one article that talked about the fact that the  karyotype of different tissues could be different.

On the basis of my rather limited knowledge of genetics, I hypothesize that individuals identified as having Klinefelter's could in fact have organs that are predominantly 46,XX or 46,XY or 47,XXY and be a more or less typical female or male.  However, they could something like 46,XY in the body and 46,XX in the brain (or 46,XX in the body aand 46,XY in the brain). I would liked to have talked more with a geneticist before putting this in a post but all of them that I have talked to either get rather upset at me or don't believe it would make a difference (1960 era thinking – raise someone as male and they are male). I also do not understand how a person with a 46,XX brain would develop a female brain without the requisite estrogen at the right time.  On the other hand, they may actually get it by a mechanism I do not understand. That is more related to my area of research and I could look if interested. The estrogen (or testosterone) thing is a major time commitment and I got my answer to my problem so I'm no longer looking.
Title: Re: XXY, any here and what of it ?
Post by: how-audrey on August 03, 2013, 07:00:54 PM
QuoteDid you have GID when you were 14 and diagnosed with KS? Or as has it occured or come to the surface more recently? Just wondering. I'm curious about intersex conditions. Also, how did they determine you have it? I know XXY males with KS are tall but XX males tend to be small and skinny.

I definitely did have transgender feelings when I was 14, but it wasn't until more recently that I really knew what those thoughts and feelings meant. Though I wish gender identity was brought into question when I was prescribed T, I'm not sure I would've known to do otherwise at the time.

I was referred to an endocrinologist after being diagnosed with hypogonadism during a checkup. I was checked for the karyotype with a blood test and have XXY. I'm about 5'9, so not especially tall. As far as some of the other symptoms go, my speech/vocab skills are fine (except when trying to post on a phone), and they found no sperm when I got it checked.
Title: Re: XXY, any here and what of it ?
Post by: JLT1 on August 03, 2013, 07:19:43 PM
Most 47,XXY males will have sperm.  It just won't be quality sperm.  If there were no sperm, as in zero sperm, not just poor mobility, deformed or otherwise unable to fertilize an egg sperm, this raises a flag.  Not a life threatening flag but something you may wish to investigate further.
Title: Re: XXY, any here and what of it ?
Post by: shufflinggiraffe on November 12, 2013, 04:11:12 PM
Quote from: Evey on July 08, 2013, 11:34:44 PM
I was diagnosed with XXY/Klinefelter's when I was about 14. Around that time I was developing breasts, though they didn't get very far before I was put on testosterone HRT and stopped that in its tracks. I kept up with the medication for 7 years until I hit a breaking point in my life and started learning about transitioning, gender dysphoria, etc. After that, I became a bit less happy to continue with it and got my shots closer to every 3-6 months instead of every two weeks. Going from not having a male level of T in my body to my body's normal levels, I know for a fact that testosterone isn't for me. At this point, I don't plan on taking renewing that supply of hormones and aim towards starting estrogen HRT this year. I've heard that people with XXY are more receptive of HRT, but I'm not sure how 7 years of steady testosterone would affect that for me.

I feel like XXY is generally not considered an Intersex condition medically, but I feel that it is. I wish there was some sort of gender therapy that was part of the treatment for XXY before being thrown on testosterone without even a consideration of an alternative.

Evey, I too was diagnosed with KS at 12 and started on Testosterone at the age of 16 I took myself off it at 34 and have now started low dose oestrogen. I consider myself a pretty normal male but with a very female sense of things. I crossdress only at home and I live and work 90% of the time very manly. I knew things just weren't right so I decided to come off "T" it does make you tired and lethargic, libido is low but after starting oestrogen I feel like a different person. More calm relaxed I dress less. I still live as others call it in "stealth" but im happy. I have not found others like me and am interested to talk to others who have a similar experience.

Simon.
Title: Re: XXY, any here and what of it ?
Post by: Doctorwho? on November 12, 2013, 05:03:42 PM
Classically xxy or as it is more properly known 23 trisomy IS an intersex condition...

However these days we are taught to use the phrase that "it is a disorder of sexual development" as for some reason intersex is regarded as being disliked by patients ??? and I speak as a trainee medical professional who is also intersex PAIS.
Title: Re: XXY, any here and what of it ?
Post by: KelsieJ on November 22, 2013, 08:04:45 AM
The whole KF/XXY discussion is tricky. The science behind Klinefelter's study was sound, but his methodology was not. XXY is not a syndrome or a malady, but a genetic variation. Not all people with XXY present with the physical differences that Klinefelter noted in his study, and critically, not all XXY people appear more male.

http://www.annclinlabsci.org/content/40/3/295.full

I won't talk about the full extent of how I presented at birth, however, there is a similar case though not exactly the same, at

http://link.springer.com/article/10.1007%2FBF00220456#page-1

When I was younger I was prescribed testosterone but it wasn't until many years after I stopped taking the testosterone shots that I found out the truth. I had developed brittle bones which easily broke, and a weird seemingly auto-immune thyroid problem. Only then, after breaking a bone and suffering inexplicable weight gain, did I find out that I wasn't given testosterone because I was "too small" as a child and needed it to help me grow, and later because I had low testosterone, I was actually given it to make me look as masculine as I could because of my genetic variation. (No intersex condition should be called a syndrome or disorder).

So there are definite health risks associated with having a birth variation, and you will need some kind of medication. The best part is that as far as your body is concerned, it will work equally well on estrogen as testosterone, so even if transitioning is not your goal, you can safely take a small dose of estrogen and this will help your bone density and any thyroid issue that you have from anti-thyroid hormones caused by low t or e levels. Most others out there take t but e is a safer option, and won't make your hair fall out from male pattern baldness, or give you 'roid rage', etc. It won't feminize you unless you want it to and take sufficient dose to do so, so it won't change your appearance if you don't want it to.

Even before deciding to go 'all the way' and become the woman I was born to be, I chose estrogen and it worked wonderfully. In fact, it's starting to catch on, and the internet has many examples of people who don't want to feminize but are taking estradiol for XXY related health complaints, such as

http://onnineko.blogspot.com/2010/05/xxy-personal-experience-using-estradiol.html

HTH
Kelsie
Title: Re: XXY, any here and what of it ?
Post by: Jamie D on November 29, 2013, 07:16:40 PM
Thank you for that information.
Title: Re: XXY, any here and what of it ?
Post by: echidna on December 10, 2013, 07:10:29 PM
Quote from: Anindya on April 25, 2013, 08:29:05 AM
Tall, well six foot  and 160 pounds in weight and undeveloped, some of the stuff that was supposed to happen in puberty didn't- chest didn't expand out, so an adolescent look, but long thin arms and no muscle development. I am 44 now and still people younger than me talk down to me as they think I am younger than they, where most believe me to be in my mid to late twenties or at worst early thirties but no way anywhere near my true age.

But this trans stuff, it is constantly in my mind but it's not that I wish to live as a woman because the way I do live is already a bit of both where I do many feminine things regards body care and various other what is usually thought of as feminine activities where some things more now than in the past because well I know what I am at last as it was only in the last few years I had the karyotype and so I am allowing my natural self at last as what I felt compelled to do was not deviant at all, it was just me. But one thing is in my mind of the trans stuff is for some obscure reason I desire breasts, not hefty ones but more the smaller size as I see the growing of those to make me physically what I feel to be as well, what I guess to be as is in between male and female, where I am passive to both genders, I desire to help others as it seems it is my worth.

But I do have some learning difficulties, physically, what I call directionally stupid-dyspraxia, some attention deficit and  some communicational difficulties where asperger's syndrome has been diagnosed in the past, but I know it is not AS, it is just something that sometimes comes with that extra x. But my IQ has been measured at 139 and my EQ as above average.

But @ Joanna Dark and others, communication is good, people write on topic or off because they feel the need to say and so I say, feel free to say, you are welcome as ar as I am concerned.

Hi All,

Interested reading the above quote. I feel many of the same things. As part of determining my ability to have children this year, I found the answer to strongly no, and then "oh by the way, your XXY"
So as per the poster above, suddenly I made sense, my feelings and approaches to life. Do I feel like a man or a woman, well no neither really, something in between yes.
I go through stages of wanting to feel more female. In the past I bought female clothes, feeling terribly embarrassed about it, saying that they are a gift for.... any way, ebay has changed that. The need is there for a while then passes.
For some reason I also crave breasts, not sure why either, always imagined having a c cup, and I am not sure why that size either, just seems right.

When my results came in with the gene test, my testosterone was 3, when the healthy range is 8 to 32. In the last 12 months I have suffered depression, spontaneous crying. Now I am on my second shot of Testosterone, which has made some difference, psychologically some balance, but I think I liked it better when I didn't get stubble on face every day.

In all this, I am not sure that my wife really understands me. When we met she thought that I was Gay, tall good skin, young looking. Not the case. However, I am not the real man that she was expecting either. Mainly I want her to love me, for me, plain and simple.

Good evening to all.
Title: Re: XXY, any here and what of it ?
Post by: Jill F on December 10, 2013, 08:55:52 PM
I refused to be tested for XXY when it was suggested to me.   Maybe I am, but knowing why I am transgender is absolutely irrelevant to me.  It would change nothing.  That's what I am, always was and will always be.  I know now I basically have a woman's brain, and I am making the necessary adjustments.  I'd rather spend the karyotype testing money on electrolysis or cute boots right now anyway.

But that's just me.
Title: Re: XXY, any here and what of it ?
Post by: echidna on December 11, 2013, 12:55:28 PM
Following on from Jill's remarks about the cost of Karotype testing, I would like to comment that at least in Scotland, this is covered by the NHS, so there are no out of pocket expenses.

Title: Re: XXY, any here and what of it ?
Post by: Sir Wafflinton on December 19, 2013, 01:38:31 AM
I just spent 8 months getting a court order so I could access testosterone therapy as someone who is FtM and not yet 18. I was hoping I would test as intersex because that would mean I didn't need a court order, but I knew it was unlikely. I knew about the "normalisation" of intersex infants but I never thought that 2 rooms away in the same hospital ward from where they were telling me how awful it would be if I got this decision wrong they could be pumping some XXY 14 year old full of testosterone when they aren't even sure of who they are, and when nobody has bothered asking them whether they even identify as a boy/man.
Title: Re: XXY, any here and what of it ?
Post by: Sir Wafflinton on December 19, 2013, 01:40:53 AM
BTW, I did have a long impassioned response, but I dropped my mouse whist trying to do the verification section and it exited the page >:(

I guess the universe is trying to teach me the skill of brevity...
Title: Re: XXY, any here and what of it ?
Post by: emilyking on April 29, 2014, 12:30:51 AM
I need to be tested, but I'm certain I have xxy.
I'm 5.6, was overweight in high school, to the point I had stretch marks on my tummy.  I definitely have more female elbows.  I had some breast growth in middle school.
In the last nine months I've been on estrogen, my fat had not changed at all.

I was had some dyspepsia as a kid.  I use to tuck my thing between my legs when going to the bath room.  I also would tuck in the shower.  I never understood why I did what I did.  I learned about transsexuals when I was 14.  I ended up hiding it until last year.