Suspecting Klinefelter Syndrome

[Ashey]

I haven't been tested since it's expensive but for a while I've suspected I might have an intersex condition. I recently looked at the symptoms of KS and it seems very likely that I have it...

-Clumsier and slower in developing motor skills, coordination, speed, and muscle strength (My mom confirmed I took longer to walk and sit-up than normal, and I was bad at sports growing up)
-Smaller testes (Had an undescended testicle which had to be corrected twice and was underdeveloped, but my testosterone levels were normal before I transitioned)
-Less facial hair and body hair (Hardly any back, chest, or belly hair, and my facial hair was sparse and very patchy)
-Narrower shoulders and wider hips (Shoulders are a bit narrow but hips are definitely much wider than normal)
-Decreased sexual interest (Maybe not interest but I always had erectile dysfunction and didn't have the same drive or instincts that men have)
-Lower energy (yuuup)
-Delay in learning to talk (Another thing my mom confirmed for me)
-Auditory processing issues (It's why I hate phones...)
-Reading difficulties (Not in comprehension but retention and reading speed)
-More docile personality (Yes, was never very aggressive and used to be rather quiet)
-Abnormal body proportions (Instead of long legs and a short torso, I have the opposite)

Most of these were taken from the National Institute of Health page on this topic.

I don't have EVERYTHING on the list, and the body proportions part is not quite typical for KS, but I think there is certainly enough there that it's either that, a similar condition, or just a ton of separate issues that happened to coincide. So for those who know a lot about this or have been diagnosed with KS, what are your opinions? Are there any symptoms that absolutely have to be there to be KS? And aside from checking for fertility issues (which given I've been on hormones for a couple years, I've already assumed I'm infertile), are there any other reasons that it might be important to get a diagnosis? Some of the things to watch out for, like osteoporosis, were already risk factors of transitioning... but is there anything else that would be unique to KS to watch out for?

[EpiceneJ]

Hey Ashey,

I'm in a similar situation (I only found this thread because of Google searching Klinfelter's + trans woman, lol, can't recall the last time I signed up for a forum...)

It's hard to say what are the definitive tells, as hormones impact different bodies in different ways (and for instance if like me, you're from a family of mostly tall people, being over 6 foot maybe isn't such a strong hint?)

I have pretty much all the symptoms, like you. I would really like to know, although obviously it doesn't really impact on me being trans.

One thing to consider though for me is what impact this would have on the hormone regime. Perhaps I might just need estrogen, given my figure is pretty 'femmy' anyway?

I have one lead on how to get tested for this, but sadly it would have to wait until next year. Like I said, I'm curious, and it would be kind of cool to have something to 'cite' to people.

[HughE]

The undescended testicle is a good indication of having had below normal male testosterone during your prenatal development, which would explain your having a female gender identity (male brain development only occurs if there's high levels of testosterone present throughout your prenatal development, the second half of the pregnancy being particularly important).

From the sounds of it, you have most of the symptoms of "eunuchoid habuitus", which is a type of body structure that results from having below normal male testosterone production during childhood and puberty, and is usually associated with intersex conditions such as KS. Really the only discordant thing there is that you say you have short legs and a long torso. The way you make the measurement, is to find the band of tissue that's just above where your penis is (or was, if you've already had SRS!), that joins the two halves of your pelvis together, which you should be able to feel as a kind of ridge if you poke your fingers around there while standing up. If you compare the distance from the soles of your feet to that band of tissue, to that from the very top of your head to it, that's the measurement. In a typical male, the two lengths should be more or less equal. I think they say that if the leg length is 5cm or more greater than the upper body length, it counts as eunuchoidism (in my case, IIRC it was 11cm difference when I measured it!). Genetics are a factor as well though, and if other family members have short legs in relation to their upper bodies, then that would at least partly override the effect of hormones.

As to what caused all this, it could be a result of being XXY. That's the commonest genetic cause. Environmental factors can cause it too though. In my case, the likely culprit is exposure to an artificial estrogen called DES, which was at one time widely used as a treatment for preventing miscarriages.

[Serenation]

Hi Ashey, all sorts of cancers, just google klinefelters cancer.

usually you would check if your hormone levels were below male range, if so proceed to karyotype test.

I'm pretty much a textbook case for klinefelters including the hormone ranges, but do not have klinefelters, so pretty much can't assume anything as far as symptoms go, just have to have tests.

[saraht123]

The undescended testicle is a good indication of having had below normal male testosterone during your prenatal development, which would explain your having a female gender identity (male brain development only occurs if there's high levels of testosterone present throughout your prenatal development, the second half of the pregnancy being particularly important).

From the sounds of it, you have most of the symptoms of "eunuchoid habuitus", which is a type of body structure that results from having below normal male testosterone production during childhood and puberty, and is usually associated with intersex conditions such as KS. Really the only discordant thing there is that you say you have short legs and a long torso. The way you make the measurement, is to find the band of tissue that's just above where your penis is (or was, if you've already had SRS!), that joins the two halves of your pelvis together, which you should be able to feel as a kind of ridge if you poke your fingers around there while standing up. If you compare the distance from the soles of your feet to that band of tissue, to that from the very top of your head to it, that's the measurement. In a typical male, the two lengths should be more or less equal. I think they say that if the leg length is 5cm or more greater than the upper body length, it counts as eunuchoidism (in my case, IIRC it was 11cm difference when I measured it!). Genetics are a factor as well though, and if other family members have short legs in relation to their upper bodies, then that would at least partly override the effect of hormones.

As to what caused all this, it could be a result of being XXY. That's the commonest genetic cause. Environmental factors can cause it too though. In my case, the likely culprit is exposure to an artificial estrogen called DES, which was at one time widely used as a treatment for preventing miscarriages.

I had the testicle thing too, but I don't think I look very much like someone with Klinefelter's. Anyway, I just measured my leg length (from the ground to the central bit of the pelvis, like you mentioned). It is 97cm. My total height is 187cm (6'1" or so), so the difference is my legs are 7cm longer. So, now I'm wondering if I am more towards 'eunuchoid' than I first thought. How much weight should I give this in evaluating if I'm an intersex person? I mean, I guess a I could just be a typical male with relatively long legs (although, in saying that, I'm disregarding quite a bit of other evidence).

PS Since I'm doing anthropometry, my wingspan is 6'1"ish - the same as my height or maybe an inch more. I don't know if that's significant, but I heard people with low T end up with long arms and legs. Shoulders 43", Chest/Bust 37", Waist 32", Hips 38" - They always seemed fairly typically male to me - I thought people with KS had much wider hips relative to their shoulders?

[cheryl reeves]

I'm a odd duck, I'm 6',waist no clue but a womans16 fits better then a 38 in mens,bust is a natural 38AA,I'm highly intelligent but hide behind a mask on that one. I was born with leg problems and had to wear braces to straighten my legs,never was much good at sports,I loved riding bikes til my legs couldn't take it anymore. I'm a fast learner and am good at being a human GPS,im a terrific map reader,I use landmarks to help find places. Puberty made me femine instead of masculine,took yrs of shaving to get any facial and body hair to grow,I was trying to look like a guy. I found yrs ago I'm a stranger in a strange land and just have to be me and not trying to blend with society.

[mutanmion]

I haven't been tested since it's expensive but for a while I've suspected I might have an intersex condition. I recently looked at the symptoms of KS and it seems very likely that I have it...

-Clumsier and slower in developing motor skills, coordination, speed, and muscle strength (My mom confirmed I took longer to walk and sit-up than normal, and I was bad at sports growing up)
-Smaller testes (Had an undescended testicle which had to be corrected twice and was underdeveloped, but my testosterone levels were normal before I transitioned)
-Less facial hair and body hair (Hardly any back, chest, or belly hair, and my facial hair was sparse and very patchy)
-Narrower shoulders and wider hips (Shoulders are a bit narrow but hips are definitely much wider than normal)
-Decreased sexual interest (Maybe not interest but I always had erectile dysfunction and didn't have the same drive or instincts that men have)
-Lower energy (yuuup)
-Delay in learning to talk (Another thing my mom confirmed for me)
-Auditory processing issues (It's why I hate phones...)
-Reading difficulties (Not in comprehension but retention and reading speed)
-More docile personality (Yes, was never very aggressive and used to be rather quiet)
-Abnormal body proportions (Instead of long legs and a short torso, I have the opposite)

...... but is there anything else that would be unique to KS to watch out for?

Hi Ashey,
I suspected I might have Klinefelter's syndrome for quite a while. I have a list of physical and developmental symptoms similar to yours. A year and a half ago, I joined a web forum for people with or inquiring about Klinefelter's/XXY. There are is a sub-forum for intersex people. It's definitely worth exploring. http://www.xxytalk.com/fusionbb/index.php?

This is how I expressed my thoughts in a private message to another forum member:
"I have a pear-shaped physique. I have very little body hair. I was very uncoordinated when i was a kid, failed at every sport I was forced to try. I had poor upper body strength compared to other boys, and, even as an adult, when I was trying my hardest to fit into the gay male world here in New York City and going to gyms, I failed to develop more upper body strength and muscle. I related to what I read about atonia/poor muscle tone. I tried running on occasion and discovered that I had pretty bad endurance too. I was a very passive, introverted, unaggressive, uncompetitive, quiet, shy boy who had poor abilities to play with other boys. I had a weird, terrifying identification with hermaphrodites, eunuchs and freaks when i read about them in books about weird people I was obsessed with reading around the time I was hitting puberty. When I was in high school and college, I felt very immature compared to other guys-- some had a vitality and unconscious sensuality about them that made me feel like a neutered piece of **** in comparison. Also, as time goes on, I identify more and more as being an invisibly androgynous person, and not fully male or masculine but not female either, kind of emotionally intersexed without being perceived as "femme" in the old school gay world. I could go on and on."

I was encouraged to get tested by some forum members. I got a couple of testosterone tests with ambiguous results (once below the bottom of the "normal range" and once a little above it), and also a karyotype—I was 46XY, with no detectable mosaics. I have American-style health insurance—the full cost for my karyotype would have been $840 US, but with my insurance, my cost was c. $150 US, which I thought was worth it, much less than the outlandish cost I had originally expected.

I'm following up on investigating my little mystery—I posted about it here a few days ago in my introduction.

There was one important consensus reached by the sages on the xxytalk forum about what they thought was the tell-tale, yes/no sign of whether a person has KS/47XXY/47XXY mosaic or not— small, firm testicles. They were agreeing that if you don't have small, firm testicles, then you almost certainly are not KS/47XXY/47XXY mosaic. Discussion of this is easy to find on that forum.

This was my source of doubt before getting tested—I do not have small, firm testicles. Lo and behold, my karyotype confirmed that I do not have Klinefelter's, unless there is a very, very tiny percentage of cells in my body which are 47XXY—this would require a more extensive karyotype that examine a much larger number of cells at more expense.

Is the small, firm testicles factor definitive? Maybe not—it looks like it's anecdotal. There are always exceptions, and I thought I might be one of them. However, there are some very smart, medically knowledgable people on that forum just like over here, and this was their conclusion.

[Serenation]

my legs are 16cm longer than my upper body following what HughE said and I don't have klinefelters (unless mosaic)

As far as testicles go how does one even know what meant to feel soft or hard or big or small only accurate way to do that is let a hospital check, they used an ultrasound in my case.

[mutanmion]

my legs are 16cm longer than my upper body following what HughE said and I don't have klinefelters (unless mosaic)

As far as testicles go how does one even know what meant to feel soft or hard or big or small only accurate way to do that is let a hospital check, they used an ultrasound in my case.

They can be measured by a doctor with something called an orchidometer:
https://en.wikipedia.org/wiki/Orchidometer

You apparently can buy them on Amazon if you wish.
http://www.amazon.com/Prader-Orchidometer/dp/B00BUOTJ16

Not sure how firmness is measured, but if you Google "Klinefelter small firm testes", you'll find lots of links to pages with more information about this. Perhaps firmness is a relative thing, like the firmness of a marshmallow versus the firmness of a grape versus the firmness of an olive.
https://www.google.com/search?client=safari&rls=en&q=klinefelter+samll+firm+testes&ie=UTF-8&oe=UTF-8#q=klinefelter+small+firm+testes