Think I might have Klinefelter's and am freaking out!

[Melody Maia]

Ok, I have just barely come to grips that I am MTF and now I have a very strong suspicion that I have Klinefelter's. I know, I shouldn't be freaking out just based on suspicion, but there you have it. My symptoms include:

Gynecomastia (b cups)
Short round body with soft features
Nearly no Adam's apple
high-pitched voice (gotten mam'ed a lot on the phone)
Female fat distribution
lack of energy and low muscle tone
sparse body hair
autoimmune disease (vitiligo)
fertility problems (1 kid, but none since despite years of trying)
problems with short term memory

I also had self-esteem issues, was very undemanding and very obedient as well. All things I have read can be part of Klinefelter's.

I do have some rather strong contraindicating characteristics too like an above average IQ (went to an Ivy League school) and abnormally large testicles (but small penis). Kinda confused by that.

In a sense, it would be a relief to know that I have a medical diagnosis, but I really wish it hadn't taken until I was 39 to find out about this condition. Going to have to see an endo to possibly confirm.

[Shynoir]

Umm I thought having XXY build an additional advantage to transition MTF? or does it cause more of a problem than good? I don't have any specific symptoms other than some (it doesn't clearly manifest that well in everyone), but I can't help inwardly hoping that I do have XXY chromosomal build because that would enable me to come out to my mother a little more say... medically? somewhat of a tangible proof. Well, that along with the brain build scans and comparisons.

I'll be getting a karyotype test as soon as I can. Although I'm not entirely sure if it will benefit or cause problems if I indeed do have a XXY build. 

[Kat_Misunderstood]

It sounds like you do need to go to an endo and get checked out.  I have klinefelters and am mtf, and it really is helping me a little with my transition in the breast department and just my overall look.  Imho, It's really not worth getting too worked up about.  In my case, after getting my hormones in balance,  I really feel better than I think I have ever felt.  Sounds like you may have it, but I am not a professional so that is just my opinion.   I hope all goes well for you though. Hugs

[Melody Maia]

It sounds like you do need to go to an endo and get checked out.  I have klinefelters and am mtf, and it really is helping me a little with my transition in the breast department and just my overall look.  Imho, It's really not worth getting too worked up about.  In my case, after getting my hormones in balance,  I really feel better than I think I have ever felt.  Sounds like you may have it, but I am not a professional so that is just my opinion.   I hope all goes well for you though. Hugs

I guess what is causing me distress is that I have always felt all along that my issues were of a psychological nature and nothing my parents could have helped with n my younger years since I never told them. There were signs, but they weren't subtle people.

However, here is a medical diagnosis. I have always been chesty which is kind of hard to miss. My self image changes yet again. Of course, the end result remains the same. If I do have it, I will be greatful if it helps with transition. Sigh, just something else to go over with the therapist I suppose.

[rejennyrated]

Well just for the record I had all of the symptoms you describe except the autoimmune condition and the large testes. Mine were partially undescended. I also have a good lively intelligence and went to some good schools.

As it turns out I am Intersex - But I AM NOT klinefelters. In fact they tested me for that and it was negative, and as a result they then didn't test me for any other condition until I was many years postop when I started haveing some strange symptoms. At which point the whole topic was reopened more generally and they screened more widely and found that I had a from of androgen insensitivity and a couple of other anomilies which as yet are still unexplained. But the upshot is I was intersexed.

So:

a.) don't freak out because based on my experience you may well not be klinefelters BUT
b) yes do get screened for intersex conditions in general but do make sure that they check more widely than just klinefelters because there are several other conditions including PAIS grade 2 which may explain your symptoms.

[Muffin]

I recently read a website about it, the thing that made me do so was because I've always had puffy nipples. I then read all the symptoms and was like check check check holy crap check check check......... I told my mum and she wants me to be tested even though I stressed that being trans and being XXY is not linked (in my understanding) yet she thinks it would make it easier to explain to people. >______<

The two things that stop me are 1) because it is linked only with biological males, even though it's (XX)Y it's still only present in males which puts me off and 2) because I prefer to not know, if it came back as XY then I'd dwell on it too much, even though I know it means nothing in regards to being trans (in my understanding).

http://www.doctorslounge.com/gynecology/diseases/klinefelter.htm

[Fencesitter]

Dear Melody,

the symptoms you describe are an indicator of you having not had "enough" testosterone in your system since puberty, or that your testosterone does not work as well as it should on you, or that your system also gets flooded with estrogen. (I'm speaking from a technical point of view here, of course if you are a transwoman, this is great for you.) How about your bone structure, is it typically male?

This may have several reasons, Klinefelter is not probable in your case as it makes people have small testicles instead of big ones. Jenny mentioned partial PAIS which makes more sense here. It might also be another intersex condition, or just a hormonal imbalance.

I would get it checked by an endo, and get other hormones checked as well, as you might also have other hormonal imbalances (insulin, thyroid gland etc.) or something in your body is producing too much estrogen, which it should not do or this estrogen factory should not be in your body at all.

[Melody Maia]

Dear Melody,

the symptoms you describe are an indicator of you having not had "enough" testosterone in your system since puberty, or that your testosterone does not work as well as it should on you, or that your system also gets flooded with estrogen. (I'm speaking from a technical point of view here, of course if you are a transwoman, this is great for you.) How about your bone structure, is it typically male?

This may have several reasons, Klinefelter is not probable in your case as it makes people have small testicles instead of big ones. Jenny mentioned partial PAIS which makes more sense here. It might also be another intersex condition, or just a hormonal imbalance.

I would get it checked by an endo, and get other hormones checked as well, as you might also have other hormonal imbalances (insulin, thyroid gland etc.) or something in your body is producing too much estrogen, which it should not do or this estrogen factory should not be in your body at all.

Today's agenda with the therapist was going to be HRT, so I would need to see an endo anyway. Looks like we will be covering a bunch of stuff. Thanks for shedding new light on the subject. I have often mentioned for years that it wouldn't surprise me if I had an ovary in there somewhere. Looks like it might be true!

I'm afraid I don't know enough about bone structure to say one-way or another. My guess is that, like a lot of things about me, it is a hybrid. First thing my therapist told me was that I have soft features and whatever I was doing, keep doing it. She thought I was already using hormones. I know my jaw is not heavy and I do have a bit of a brow, but pretty understated. Again, hybrid. In a lot of ways, I am like my sister who is one year younger than me. I have average should width for a male, but I am not sure how much of that is fat and how much is me. My youngest sister also has very broad shoulders, so it appears genetic. Two of my sisters also have Polycystic Ovary Disease and two of the three are also virtually infertile. Hormone issues seems to be a big thing among us maybe.

Interesting thing is that years ago I had my thyroid checked because of my vitiligo (apparently, they can be related). Thyroid conditions are also big in my family. The GP didn't find anything. However, my vitiligo has been very atypical with large sections being re-pigmented spontaneously. My sister, who is a nurse, said her GP didn't find anything either. It wasn't until she went to an endo that they found her PCOS. I guess I won't know anything until I go to an endo, which has been the plan all along anyway.

Thanks everyone for your input. It has really helped.

[Fencesitter]

One more idea:
another reason for physical features such as yours might be long-time exposure to high doses of xenoestrogens since puberty. These are chemicals such as phthalates etc. which have, among other negative effects, an effect that mimicks estrogen. This stuff can be found in some carpets, PVC floorings etc. However, due to your family history, I don't think that's the case for you. I just wanted to add this information in case other people have physical anormalities similar to yours and read this thread too. (It would not make me wonder if these xenoestrogens can also have influence on a fetus so that the kid later becomes transsexual, provided it's a genetic male.)

My parents got a sick building syndrome from an awful 70ies PVC flooring in their home which they had hidden underneath their carpet, and the flooring also had... well... somewhat feminizing effects on my dad (body, not mind of course) - fat redistribution, less body hair etc. We got the flooring tested and it was very unhealthy and emitted huge amounts of a particularly nasty kind of xenoestrogen. Thanks god we got rid of that bastard, their home is healthy now, they got rid of their health problems, and my dad can even joke now that I'm the only transitioning person left in the family. Doc said it may probably have made my dad infertile (which he didn't care about as he did not want to have any children any more then). Oh, and I don't recommend to any transwoman to expose herself to xenoestrogens just to get the feminizing effects. These chemicals are horrible and make you really ill, and your gender dysphoria becomes your slightest problem then.

Here are 2 links on the subject of xenoestrogens:
http://en.wikipedia.org/wiki/Xenoestrogen
http://en.wikipedia.org/wiki/DEHP

[Karla]

This post made me think, I haven't considered I had an Intersex condition just because there was nothing 'ambiguous' down there 

But the rest of my body is kind of ambiguous, like Jenny I have all the symptoms Melody mentioned in her first post except the autoimmune and the testes part. I have no idea about fertility 

I've had A-B cups that wouldn't change, dollar size areolas, my electrologist thought I've been on hormones or done laser before I went to her. No adams apple to speak of although my voice went deeper but still soft according to people. My bones and torso are short and small. Uncompetitive submissive behaviors, lowest self esteem ever... 130+ IQ !!

This is confusing and scary, and I don't know what to do next, I dont have money for endos, will my doctor be able to do anything??
If I have it maybe things will make more sense? But it wouldn't change a thing either way.

[Melody Maia]

One more idea:
another reason for physical features such as yours might be long-time exposure to high doses of xenoestrogens since puberty. These are chemicals such as phthalates etc. which have, among other negative effects, an effect that mimicks estrogen. This stuff can be found in some carpets, PVC floorings etc. However, due to your family history, I don't think that's the case for you. I just wanted to add this information in case other people have physical anormalities similar to yours and read this thread too. (It would not make me wonder if these xenoestrogens can also have influence on a fetus so that the kid later becomes transsexual, provided it's a genetic male.)

My parents got a sick building syndrome from an awful 70ies PVC flooring in their home which they had hidden underneath their carpet, and the flooring also had... well... somewhat feminizing effects on my dad (body, not mind of course) - fat redistribution, less body hair etc. We got the flooring tested and it was very unhealthy and emitted huge amounts of a particularly nasty kind of xenoestrogen. Thanks god we got rid of that bastard, their home is healthy now, they got rid of their health problems, and my dad can even joke now that I'm the only transitioning person left in the family. Doc said it may probably have made my dad infertile (which he didn't care about as he did not want to have any children any more then). Oh, and I don't recommend to any transwoman to expose herself to xenoestrogens just to get the feminizing effects. These chemicals are horrible and make you really ill, and your gender dysphoria becomes your slightest problem then.

Here are 2 links on the subject of xenoestrogens:
http://en.wikipedia.org/wiki/Xenoestrogen
http://en.wikipedia.org/wiki/DEHP

Yeah, the home I grew up in dated back to the 1920's. It still had old-style plumbing. No PVC anywhere that I could think of. Hardwood floors. Maybe the vinyl wallpaper my parents put in a few of our rooms (including, mine). At least I think it was vinyl. Perhaps not, I don't know. My dad didn't undergo similar feminizing effects. What does give me pause is that my brother-in-law, who now lives in that home, developed some vitiligo like symptoms as well. Not nearly as severe as mine, but he didn't spend his puberty in that home.

My sisters and I also wonder if our conditions had anything to do with my dad's exposure to agent orange in Vietnam. He developed Parkinson's late in life and we recently found out his brother, also a vietnam vet, has it as well. Before he passed a couple of months ago, he was informed by the Veteran's Administration that the VA was giving payouts to vets who developed Parkinson's because of potential exposure to agent orange. Naturally, given the prevalence of strange conditions in his kids (one of my sister's also has Sarcoidosis), we fear the worst. Between these things, not to mention thyroid issues and diabetes, the family is a health mess.

[Melody Maia]

This post made me think, I haven't considered I had an Intersex condition just because there was nothing 'ambiguous' down there 

But the rest of my body is kind of ambiguous, like Jenny I have all the symptoms Melody mentioned in her first post except the autoimmune and the testes part. I have no idea about fertility 

I've had A-B cups that wouldn't change, dollar size areolas, my electrologist thought I've been on hormones or done laser before I went to her. No adams apple to speak of although my voice went deeper but still soft according to people. My bones and torso are short and small. Uncompetitive submissive behaviors, lowest self esteem ever... 130+ IQ !!

This is confusing and scary, and I don't know what to do next, I dont have money for endos, will my doctor be able to do anything??
If I have it maybe things will make more sense? But it wouldn't change a thing either way.

As a first step I would at least speak to your doctor and see what he/she can do for you. I imagine this would be something covered under insurance if you have coverage.

[Fencesitter]

Yeah, the home I grew up in dated back to the 1920's. It still had old-style plumbing. No PVC anywhere that I could think of. Hardwood floors. Maybe the vinyl wallpaper my parents put in a few of our rooms (including, mine). At least I think it was vinyl. Perhaps not, I don't know. My dad didn't undergo similar feminizing effects. What does give me pause is that my brother-in-law, who now lives in that home, developed some vitiligo like symptoms as well. Not nearly as severe as mine, but he didn't spend his puberty in that home.

As long as none in your family developed any sick building syndrome effects and you are the only feminized biological male there, it was probably not the building that feminized you from teenage age. Plus, some of your symptoms hint at a low testo level or impaired reaction to testo since/at puberty, and other symptoms hint at a more frequent testo problem (I think you don't live at your parents' any more). Vitiligo, as far as I know, is no symptom of a sick building syndrome, but I'm no specialist here. Sick building syndrome rather gives you nice little symptoms such as asthm, rushes, headaches, a generally weak immune system etc. and in case of xenoestrogens, also feminizing effects. 

I just mentioned xenoestrogens as an additional possibility as I know from my family that xenoestrogen effects can be extreme and as this cause for feminization is both relatively common and usually missed by docs. This is why I kind of hijacked your thread to put this possibility in, though your sisters' hormonal problems rather hint at a medical family issue than a sick building syndrome.

My sisters and I also wonder if our conditions had anything to do with my dad's exposure to agent orange in Vietnam. He developed Parkinson's late in life and we recently found out his brother, also a vietnam vet, has it as well. Before he passed a couple of months ago, he was informed by the Veteran's Administration that the VA was giving payouts to vets who developed Parkinson's because of potential exposure to agent orange. Naturally, given the prevalence of strange conditions in his kids (one of my sister's also has Sarcoidosis), we fear the worst. Between these things, not to mention thyroid issues and diabetes, the family is a health mess.

I'm sorry for your father having gone through the Vietnam sh*t, and sorry for your family's health being in a bad state. I don't know about Agent Orange effects on male sperm, I only know that the uranium ammunition in the Iraq war caused a lot of trouble, but that's a different substance. You seem to have a lot of auto-immune problems going on in your family. One more good reason to check your hormones, as the more physical trouble sums up, the easier your immune system might get crazy.

Anyway, I would try to get my hormones checked if I was you, not just the sex hormones. As your feminization is not normal and might correlate with other problems. Klinefelter ist just one of many possibilities, as it also causes feminization, but I think it's rather something else in your case (you wrote that you have big balls and that your sisters have PCOS and 2 of them are practically infertile - which I am also sorry about).

[Fencesitter]

This post made me think, I haven't considered I had an Intersex condition just because there was nothing 'ambiguous' down there 

But the rest of my body is kind of ambiguous, like Jenny I have all the symptoms Melody mentioned in her first post except the autoimmune and the testes part. I have no idea about fertility 

Is the face in your profile your real face? Cause it does not look overrun by testosterone at all, I see no square chin, bulgy brow bones or whatever effects of teenage years testo effects. Have you been on estrogen yet? Plus, what intersex is depends on the definition. The broadest definition also includes certain syndromes causing extreme natural sex hormone imbalances which make people automatically transition to the other sex or to an intermediate in-between state. The narrowest definition of intersex only looks at the genitals, the sex organs you have in your belly and your chromosomes, point.

I've had A-B cups that wouldn't change, dollar size areolas, my electrologist thought I've been on hormones or done laser before I went to her. No adams apple to speak of although my voice went deeper but still soft according to people. My bones and torso are short and small.

This might even make quite a lot of cis guys run to the doc to see what the heck is wrong with them, but if you are a transwoman - which I suppose you are, as you are on this website and from your nick and your profile pic - this probably never alarmed you but rather made you happy. Oh, the adam's apple - my dad does not have any visible adam's apple. Nor do I, we both have a short and thick neck, by the way. You can feel over the front of your neck with your finger, upwards or downwards. It's like small ribs and where you have your vocal chords, you can feel that this "rib" is protruding and bigger if it got some testo effect, but if it did not get that effect, all ribs are about the same size. (My vocal chord "rib" is a bit bigger than the other ones, but only a bit. My father never let me feel his as a comparison.)

Uncompetitive submissive behaviors, lowest self esteem ever... 130+ IQ !!

Congrats for your high IQ if you can use it well in your life, but your IQ has nothing to do with hormones going crazy (apart from a hormonal imbalance impairing your concentration and causing bad IQ test results, or causing extreme awareness which might improve your IQ test results). Low self esteem and submissiveness etc. can come from gender dysphoria or any other problems or (neutral) character traits. If you were a cis guy, these problems might be connected to having a feminized body.

This is confusing and scary, and I don't know what to do next, I dont have money for endos, will my doctor be able to do anything??
If I have it maybe things will make more sense? But it wouldn't change a thing either way.

First of all: Sex hormone imbalances sometimes correlate with other hormonal imbalances, but do not necessarily so. You still want to get the other hormone stuff checked if possible as some other problems might co-occur with your feminization without being acute yet. You don't want them to ever get acute. Or it's only the sex hormones which go funny in your case, and the rest is alright.

For an example, I have PCOS, a frequent transman's syndrome - 50% of the transguys have it, only 5-10 % of the normal female population among Caucasians. PCOS does not only cause high testosterone levels, but is also connected to insulin anomalities, and accordingly I have pre-diabetes, the endo told me. And indeed I fall into hypoglycemic attacks frequently, which means I tremble when I'm hungry and feel like a starved Siberian wolf then. Thanks God I know about that and know how to handle it and how to prevent a degradation to diabetes type II - if I had never got it checked and taken these measures, I might have developed diabetes type II by now. Plus knowing how to handle it has decreased my hypoglycemic attacks a lot.

Do you have any other important health problems? If you feel healthy, that's probably okay, but I'm no medic, and prevention is always the best you can do. If you feel healthy and you only started feminizing a short time ago, I'd be alarmed as you might have a new growth in your body which produces sex hormones (some growths do it, and I'm not talking about a hidden ovary here), or your have a nasty PVC flooring in your flat etc. Other hormonal problems might cause you symptoms like this: you tremble when you're hungry (insulin), you can hardly sleep and are nervous all the time, or phlegmatic or aggressive (thyroid problems), or they may cause other troubles - getting fat or losing weight easily, fast heart-beatings, skin thinning etc.

A lot of this stuff can be checked by a GP, but he's not specialized for this sort of stuff. Maybe you can get it checked up by a specialist. If you don't have the money, better get your hormones checked by a GP than by nobody. Sure, it's heaven on earth to be somewhat naturally feminized if you're an MTF, but don't forget it's not normal for your male body and get a check-up.

[Karla]

Hi Fencesitter, your reply was very comforting and it raised some questions which I'm now convinced I should investigate with my MD's help.

<< Yes that's me there in the avatar  , I took that pic maybe a week ago; now I'm almost 4 months on HRT.
My face and skull still looks similar to my sister's. Since I'm MTF I'm not complaining as you said 

I don't know if I have sex hormones imbalance because I didn't check them before I started HRT, only liver and kidney's health were checked. On a later followup I had my other hormones checked and apparently they're normal.

I did tests for the Dept of State's indulgence, and was issued the clean bill of health. (the docs looked at me weird when i took my shirt off..  one male doctor took 1 look at me then went and called his female coworker instead, they're like that there.. yep fun times!!)

So I were to verify if I have sex hormone imbalance will I have to suspend HRT?
I know about growths in a hormone producing gland inside the brain, is that what you are referring to??


Muffin,
I agree. I don't want to feel like I need "proof" for others to more readily accept me into their world models, but I do understand how it makes it easier for some.

I wonder if it makes any difference legally here in the US-- for better or for worse--if one is diagnosed with an Intersex condition, and for an IS transexual in particular.

[Sadie]

I also suspect I may have Klinefelter's or something else intersex as well.  I've have felt female since I was a child, yet I still have not started transition but want to by the beginning of the next year.  However, I just recently I went to my PCP and he ran a full hormone screen on me, this was the first time I have ever had my estrogen tested. My estradiol level came back at 288 pg/ml.  As far as I have seen this is within a natal females normal range, and I am not on hormones so I have no idea how it got that high.  Neither did my PCP, so in 2 days (finally, its been like 2 months waiting) I will be seeing an endocrinologist to see if I can find out more.

[Fencesitter]

Dear Karla,

it's difficult to say anything for sure if you're already on hormones. Just let me say that your facial bone structure doesn't scream like "I got lots of testo, hooray". This will be great for your passing. Of course, it's not very relevating to check your sex hormone levels now as you're on estro anyway now. You might still get them checked to get sure the dose is alright, or to get your other hormone levels checked to go sure that you only had an abnormal sex hormone level and the rest is okay. Usually for guys it's important to have a good natural sex hormone level, but of course it's different for girls... So the important thing in your case is just that the sex hormone level is alright for your purposes and that the other hormones are okay as well.

I did tests for the Dept of State's indulgence, and was issued the clean bill of health.

Sorry, I am from Germany, and this says nothing to me.

So I were to verify if I have sex hormone imbalance will I have to suspend HRT?

I don't know, ask an endocrinologist. If your hormone levels did not get checked before, all gets somewhat trickier. Maybe your dosage is not okay if they just took the dosage "fitting any transwoman" and you have a natural estro rush in your system.

I know about growths in a hormone producing gland inside the brain, is that what you are referring to??

For example, yes. I also thought about really nasty things you want to get out of your body, such as cysts and tumors (not necessarily cancer), some of them produce sex hormones. I did not want to be that precise as I did not want anyone to freak out here in this thread, but you're asking especially for it so I'll answer. So, well, I know some of these growths can produce testosterone, especially cysts in the ovaries when you have polycistic ovary syndrome, and I am not 100% sure if some growths can also produce estro, but as far as I remember they can. In case of doubt, better get this stuff checked. Might be nothing or harmless bullsh*t, but also a nasty surprise if you're very unlucky.

I say one more time, I don't want to shock anyone with horror stories, it's just better to get the things checked up which you normally don't get checked up as the symptoms your male bodies show you are good surprises for you due to gender dysphoria.

[Melody Maia]

Given my sister's Sarcoidosis and my other sister's polycystic ovary syndrome, the idea of tumors or cysts making estrogen is kinda scary. However, I feel pretty healthy and it would have been something I have been living with for 25 years or so. I am going to make an endo appointment today regardless. Therapist told me yesterday that she will write my letter for HRT next month so that I could schedule my endo visit for the following month. That would satisfy the three month standard of care she adheres too, allow me to get on the the endo's one month waiting list and get me started on HRT as soon as possible.

[lilacwoman]

and get me started on HRT as soon as possible.

are you the same Melody who gets to do a little crossdressing in the privacy of your home?
I hope you are thinking this through and asking your wife about things as while she may not be bothered about what you do in the privacy of your home she may care very strongly about what the friends and neighbours think.

[Melody Maia]

are you the same Melody who gets to do a little crossdressing in the privacy of your home?
I hope you are thinking this through and asking your wife about things as while she may not be bothered about what you do in the privacy of your home she may care very strongly about what the friends and neighbours think.

I don't know. I am not much of a crossdresser nowadays. In any case, yes, none of this is a solo decision. My wife and I talk and talk and talk through all decisions and ramifications. As I mentioned in this thread, my features are already somewhat feminine and I already have b-cups. I am not sure the neighbors will even notice for quite awhile. The neighbors do also include a gay couple, so things are a bit more relaxed than average for Texas. We'll see how things go when I start RLE next year, but we are prepared to move if we have to. My wife is the breadwinner and she telecommutes and could do her job anywhere.

So far she is on board all the way through SRS. How our relationship ends up is still an open issue, but she has been very supportive in the face of all of this.