Could It Be Klinefelter's?

[Guest Ashlyn M]

This is kind of an embarrassing question to ask, but I don't have anyone that I can go to about it. I don't have a therapist anymore, and I can't bring it up to my dad.

I have some of the symptoms including possible ADHD or ADD, breast enlargement, my body hair is growing kind of weird (like it'll grow in certain places on my face very well, but other areas like my upper lip and cheeks not so well, and my chest has hair but really not all that much), I might have wide hips but I'm not too sure yet since I'm very overweight at the moment, I'm tall too at around 6'3 but my dad is tall too, thinking about it now the fat that I have is mostly around my belly and thighs but that may not mean anything, and I have one of the 'down below' symptoms.

Not only those things, but today I was randomly googling a problem I've had for a while, loss of smell. I'm pretty sure I could smell really well as a child, but for the past few years I can't really smell anything unless it's really strong. But on one of the websites it said something about klinefelter's and that's why I'm delving into it again this afternoon. I often do that when I'm reminded of the syndrome, because I really feel like I might have it, but I can't do anything about it because I'm still underage and I don't have anyone to go to.

Lastly, I was giving it some thought before I started writing this post, and I started to wonder if maybe my gender identity disorder could be linked to this if I do in fact have it? I identify as genderfluid, so sometimes I feel more female, and sometimes I feel more male. I thought maybe this could be the reason maybe. Or at least part of the reason.

Am I just being stupid and looking into things too much?

Also the website that I went to earlier is this one: http://www.mayoclinic.org/symptoms/loss-of-smell/basics/causes/sym-20050804

It's listed under Damage to your Brain or Nerves. The smell thing is probably not really what I have, but it alarmed me to see that listed as a possible reason why since I've been questioning if I have this or not for a while now. It's probably more likely caused by the fact that I hold in my sneezes though which might mess up my sinuses.

Sorry for the really long post, I'm just really desperate for answers. And I know that no one here can diagnose me with it, but someone could still tell me if it's a possibility or how likely, you know? Anyway, sorry again, and thank you very much in advance.

[VickySGV]

It would all be so simple if our doctors could plug us into a machine that clinks and whirs for a few moments and spits out a piece of paper or plastic that says Gender Dysphoria, Klinefelters, Intersexed, AIS, PAIS or a bunch of others which identifies us on the spot, and which satisfies our relatives with SCIENTIFIC PROOF and maybe in there some relgious verses too that validate us and give instructions on what our future will be.

It is not that simple just now since MANY things are at the root of Gender Dysphoria. The Dysphoria however needs to be identified in a real live human being and not rely on an underlying physical quirk to be real and treatable. You may have Klinefelter Syndrome, but it alone is not a necessity or really even a causative factor, but I suppose it could make your GD more acceptable to your family, since it is not a matter of "blame" or causation by them.

I have a "long string" in one gene responsible for Testosterone processing in my body. The long string simply keeps a T receptor from using T effectively. I had that found by volunteering for a scientific study for free. A test called a Karotype test is needed to diagnose Klinefelter's syndrome which is expensive unless your doctor finds a need for it. I should add that I have several Klinefelter symptoms. None figured into my getting HRT or GCS.

[Guest Clair Dufour]

What you need first is an MD. I have a friend in NC who is a public health therapist and they have a good

program if you don't have the money or insurance. One of her biggest problems is that patients will not come

out to her fearing that the state has a registry of LGBT and other people. This is not true! While I cannot

speak about the schools, they should have addressed your issues years ago. They have the contacts to refer you

to County Public Health if that is all you can afford. Also, the closer you are to Chapel Hill the better, as

they have one of the best TG programs in the country.

[Guest Ashlyn M]

It would all be so simple if our doctors could plug us into a machine that clinks and whirs for a few moments and spits out a piece of paper or plastic that says Gender Dysphoria, Klinefelters, Intersexed, AIS, PAIS or a bunch of others which identifies us on the spot, and which satisfies our relatives with SCIENTIFIC PROOF and maybe in there some relgious verses too that validate us and give instructions on what our future will be.

It is not that simple just now since MANY things are at the root of Gender Dysphoria. The Dysphoria however needs to be identified in a real live human being and not rely on an underlying physical quirk to be real and treatable. You may have Klinefelter Syndrome, but it alone is not a necessity or really even a causative factor, but I suppose it could make your GD more acceptable to your family, since it is not a matter of "blame" or causation by them.

I have a "long string" in one gene responsible for Testosterone processing in my body. The long string simply keeps a T receptor from using T effectively. I had that found by volunteering for a scientific study for free. A test called a Karotype test is needed to diagnose Klinefelter's syndrome which is expensive unless your doctor finds a need for it. I should add that I have several Klinefelter symptoms. None figured into my getting HRT or GCS.

I didn't really mean it like that. I mean, I just wish I could know now if there's something wrong, and not have to wait 2 years to find out. It's hard to explain, I'm sorry I worded it weirdly.

[VickySGV]

If you have Klinefelters Syndrome, it is NOT WRONG for you, it is how you are put together. It may affect your ability to get a girl pregnant (or another guy). I suppose if you cannot be the father of your parents grand brats they are going to moan and wail, but it is not wrong. Sterility is the major factor that some people worry about there, but many other syndromes do that as well. As I said, I have many symptoms of Klinefelters, but I have three adult children that misgender me mildly, and three grand kids who are cool.

The ONLY way you will know is by a gene test, and Clair gave you a wonderful lead on that one. I have friends who go to the facilities at Chapel Hill.

[Guest Ashlyn M]

I wouldn't be a father anyway haha. But thank you both for the replies.

[StephanieVikingGirl]

Hi Ashlyn,

When I started transition that meant that I had to get health coverage, and work with a clinic for my hormones. My S.O. Alex is a trans guy, and he set me up with his doctor here at the nearby clinic in Sacramento. I have been on HRT since July 2014, and living full time since December 2014. So anyway, a few months ago Alex was looking at stand to pee devices modeled from volunteer male subjects, and I looked over, and was surprised to notice that mine didn't look like theirs. I informed our doctor, and with a bit of investigation, it soon became obvious that I was intersex

I have distal hypospadias (the urine exits from the underside, near the end of the phallus), I have a lot of extra skin hanging, and a wide dark line along the underside,(I have very small, and soft testicles), the line narrows, but continues over the scrotum, then it becomes a noticeably raised line along the perineum. I also have eunuchoid body habitus, which makes me much taller than my family because of my long legs, I have a somewhat feminine bone structure, wide hips, and feminine features. My arms are disproportionately long compared to my height. My sense of smell is fine, in fact kinda better on Estrogen. I had very little odor, or body hair, ever, and my facial hair was sparse enough to pluck. I used to have some anger/anxiety/depression issues (thankfully under control), and I am very naturally feminine in voice, mannerisms, and body language. My doctor suspects that I have Klinefelter's syndrome. I have already had a consultation with a Genetic Counselor, and she has referred me to have my karyotype checked for 47 XXY, or whatever underlying Chromosomal anomalies might be behind my physical, and mental symptoms.

I hope my story answers some of your questions, yep, I think it is possible that you might have Klinefelter's, but only a karyotype test will determine what your chromosomes are really like.

hugs,

Stephanie

[Guest AllisonRae]

Hi Ashlyn, First please don't feel embarrassed dear. You are among friends. I have wondered about myself as well for years and would like to be checked. I do have wider hips, I am taller than my parents by around 7 inches, I always had fertility issues, my facial hair never really grew much until my 30s and my parents told me that there was some issue with my penis and excessive skin. Never really knew the details on that. I have fought weight issues all my life but I realize that this is reaching, have lost 30 pounds since starting HRT in July. Now granted I had and still am excercising and watching my diet but weight loss on HRT is not typical. All this on top of how I felt during my life and the fact that I always had a different approach to problem solving than my male coworkers over my career. Some of this can be wrote off but it really makes me wonder like you are. Take care!

Hugs

Allie

[Guest Ashlyn M]

Thank you for your reply too, Stephanie

[Guest Ashlyn M]

And thank you too, Allie

[StephanieVikingGirl]

Hi Allie, and Ashlyn,

It could very well be possible that we all have Klinefelter's syndrome, and not really all that surprising. I have learned that it is almost common at 1 in 500 or so. I have finally fixed my problems with insurance, the Medi-Cal folks were totally confused by my name, and gender change. So at my next appointment with Pablo, which now has to be rescheduled unfortunately since he is unavailable on March 4th, I will finally have my blood drawn for the chromosome testing. Pablo (my doctor), Alex (my S.O.), and the Genetic Counselor all said they would be surprised if I don't have an underlying chromosomal anomaly for my symptoms/traits. My arms are ridiculously long, much of it extra humerus length, which Pablo said almost surely indicates XXY. I am 5'10" tall (I shrank two inches from my military days), but my finger span is 6'2.5". You can tell if you look at my profile photo how disproportionate my arm lengths are compared to my height. That, and my hypospadias are hard to ignore.

hugs,

Stephanie

[StephanieVikingGirl]

Hi all,

U.C. Davis Medical called me yesterday to tell me that my insurance has approved my blood test for XXY. It is kinda overcast today, so I am going to stay home, and continue recovering from Tuesday's bike ride (I ran into a stiff head wind, and my body is tired today still). I figure it takes two weeks to learn the results anyway, so why not go there tomorrow. I am very anxious to find out, but not a big rush now that I know insurance is covering it. Too physically tired today.

hugs,

Stephanie

[Guest AllisonRae]

Hi Stephanie, I actually am anxious to here your results. Been subtly trying to suggest that my doctor test me but so far she is not biting. I would really like to be tested just to clear this up in my own mind. At this juncture in my life it matters little except to sate my own curiosity. Like ypu I am happy now just to be me. Such a precious feeling to have!

Hugs

Allie

[StephanieVikingGirl]

Hi Allie,

I got my blood drawn today at the nearest U.C. Davis Medical lab to where I live here in Sacramento, and so two weeks from now I should learn the results. Yep, I am very anxious to learn the results.

One of the things noticed by both Pablo (my doc), and the Genetic Counselor, and they both asked me about was span of my hands versus my height. Apparently this is one of the easiest to check signs of eunuchoid body habitus. In my case, I am 5'10" (way back in my military days I was measured at 6'0", oh well), but my hand span is 6'2.5", and this was in the report written up by the Genetic Counselor (a lot of the extra length is in the humerus bone). So you might want to measure yours to see if your hand span is over two inches greater than your height, if it is, then tell your your doctor that it is a possible symptom of Klinefelter's syndrome. Reports of genital anomalies reinforce the possible diagnoses, but of course I am not a doctor, just a patient. I just know that as soon as I told Pablo about my hypospadias he took it real seriously, and dropped me off Spiro to see how that would affect my blood test (I didn't have an initial test since I kinda was uh not under supervision for the first two months of HRT, not recommended). As it turns out, I just need Estrogen injections to fully suppress my Testosterone. Yep, no T blockers for me, that's groovy, less medicine to take is great. I hope some of this info helps you Allie, I know how it is to be curious about being intersex, I suspected something, but didn't actually realize that I was different in the genitals until about six months ago. Just not observant, or not yet ready to see it perhaps? Whatever, I am groovy about everything nowadays, except for the usual trials and tribulations of life.

hugs,

Stephanie

[Guest AllisonRae]

Hi Stephanie, Glad to hear your under way in finding out. Oh how I dislike blood draws though.

I need to check my hand span measurement. I think it may just add to my long time suspicions. My t level was borderline low to start with so I am on a lower dose of Spiro. This information has help, especially about the hand span. Very interesting stuff. With me now it is mostly a curiosity since like you I am feeling really groovy now, lol. I am overcoming a near lifetime of anexity issues that I never thought I had. I never knew that it could feel this good just to be alive!

Hugs

Allie

[StephanieVikingGirl]

Groovy Allie, happy to give info!,

I always have to look away when having my blood drawn, and I am too girly to inject my E as well, but Alex has no problems doing it for me. Besides height to hand span being disproportionate, another easy to check symptom is small and soft testicles. I have taken to calling mine the almond brothers, since they are similar in size and shape to large almonds, but much softer than those big things males have. We laugh about my anomalies now, lol. Yep, it really doesn't make any difference now that I live as a woman. I mainly want the info for curiosities sake. I am kinda also curious if I have internal anomalies as well. Especially if any of my anomalies will affect GCS surgery. I will consult with Dr.Satterwhite about it when Alex goes in for top surgery consultation. It really does make life easier when your spouse is also going through transition.

hugs,

Stephanie

[Guest erinanita]

Hi all,

I'm not and expert on Klinefelters Syndrome, but god how I hate that terminology. The term I use is xxy. That's what they are looking for in the karyotype - your chromosomes - are they xy, xx, or something else. In other words, are you male female or something else. I had a karyotype done years ago. The results were xxy/xxxy/xy. It's a mosaic. Mostly I just call it xxy, an intersex condition, because I'm not male and I'm not female. Although I can pose as either, I prefer to present as female.

I have some of the classic characteristics. My neurologist says it is the cause, in my case, of my gender issues, diabetes, epilepsy, osteoporosis, osteoarthritis and a host of other conditions. It hasn't been easy, but I've lived with it. I take a lot of drugs to control diseases and conditions, not any different that other people take for these diseases. Epilepsy is the worst. Drug interactions cause seizures and they won't do electrolysis on me because they say it will cause seizures. I don't need Spiro because my body never produced testosterone, but I was told 14 years ago I needed to take it. Big, big mistake.

Anyways, it's an interesting subject.

Erin (Thtufus)

[StephanieVikingGirl]

Hi Erin,

Yep, it certainly is an interesting subject. I also have osteoarthritis, primarily in my knees, but I didn't realize that being intersex may have contributed to the condition. I should find out in about eight days what my chromosomes are like. My parents and my teacher thought that I had a mild form of Epilepsy way back when I was in elementary school. I attended Special Ed. from third grade through sixth. My family always considered me to be a weird kid, but my mom knew that I was in fact extremely intelligent. I was extremely shy, and introspective when I was younger. However, I have to admit that the military brought me out of my shell. I always joke with Alex that if someone was looking for an ex-infantry sergeant, they would ask him if he was a long time before they would ever think it might be cutesy me, lol. In any case, I totally agree with you, Klinefelter's syndrome is a kinda drastic sounding medical term. I prefer XXY, or 47 XXY trisomy, or something like that. I am getting kinda anxious to find out my karyotype, only a bit more than a week to go.

hugs,

Stephanie

[Guest erinanita]

Hi Stephanie,

I used to work in oilfield construction and I injured my knee back in 2000. I was on Workers' Compensation on and off for several years. I had my first surgery on it in 2001 but it did not work. I was sent to a rheumatologist to look further into the injury and he was the doc who said that it was osteoarthritis and Workers' Compensation didn't have to cover me because I had Klinefelters Syndrome. He was the one who insisted I had to take testosterone. I checked with the union and with WCB and they said it was all bs. But unfortunately, I did fall for the testosterone thing for a short period of time. I had poor self esteem and self confidence and I thought the T helped with that, but my relatives and friends said it made me aggressive and arrogant. It also started hair growth in places where I hadn't had any and didn't want any. The same doctor interfered 3 years later when WCB was covering me for a Carpal Tunnel Syndrome surgery, again saying that was caused by Klinefelters Syndrome.

Yeah, epilepsy is a nuisance. Every time I think it's under control I have another seizure. Usually they take my driver's licence but the last time they didn't take it at all. I have a good neurologist. Because of epilepsy and the testosterone I took, I have to shave every day. Oh well, it could be worse.

As for the IQ, I was in the honours class every year until grade nine. I was really bored and flunked. I picked up and made it through high school but I just ran out of ambition. Trade school scared the daylights out of me but I did really well at that. I still went through life with a very poor ambition.

Although I know that a lot of people were never diagnosed with Klinefelters, I wouldn't wish it on my worst enemy, especially mosaic cases and variants with more than two X's.

Erin (Thtufus)

[StephanieVikingGirl]

Hi Erin,

Thanks for the info, I didn't know that osteo-arthritis was associated with XXY, and its variants. I am trying to avoid surgery on my osteo-arthritic knees (first noticed jogging on the mall in Washington D.C. in winter). I never had any T supplements fortunately, so I pluck every couple of days when I remember to check on my face. I only shave my armpits, and legs once a week or two.

I never thought that I actually had epilepsy, I really didn't understand what they were seeing that I wasn't. I do go into trance rather easily, and I can lead others into trance as well. Folks like us are valued highly in my faith for shamanic abilities. For all I know, my propensities for trance work might be related to epilepsy.

Despite my previous career, and my current work as a wine tour guide, I also have low self esteem, I always have had it. I was shy until the military made me an NCO, it kinda forced me to find my acting ability and act as if I was not shy. False bravada, but it works. Fortunately I don't need to fake my chattiness, that comes naturally.

Life has been very hard for me at times, and I almost didn't make it to this point, so yeah if this is typical for those afflicted with XXY (the more Xs the worse it is), I wouldn't wish it for anyone. However, I gotta say, it is an advantage now that I live as a woman (I blend in despite my height). I could do without my heart defect, osteo-arthritis, possible epilepsy, panic/anger issues, and whatever else that seems to come with my condition though.

Well, this Friday it will be two weeks since I had blood drawn, so it won't be long before I finally learn my karyotype. Given all of my symptoms, I will be disappointed a bit if they don't find something in my chromosomes underlying my traits. However, I do agree with the doctors that most likely something is up with my body's blueprint. I just want to know what it is so that I can find closure. Also I don't want to be blindsided by any health issues stemming from my genes.

hugs,

Stephanie

[StephanieVikingGirl]

Hi all,

I finally have an update, I received a phone call from the Genetic Counselor yesterday. Given my multiple intersex anomalies, they fully expected to find XXY, but after checking 50 sets of chromosomes from my blood they only found XY. Surprising for me, and the doctors. She said that the blood test doesn't rule out some mosaic chromosome anomalies, possibly to be found in other parts of my body that don't easily show up in my blood. She said that if it remains a concern, more tests can be done. Unfortunately Pablo, my primary doctor whose specialty is endocrinology got an offer for a better position elsewhere, nice fellow (he gave us his cell phone number to keep in touch). So anyway that is where I am now on the intersex causation front. I have much more pressing medical concerns for a sick friend in the hospital, so this stuff is kinda on hold for now.

hugs,

Stephanie

[Krystal88]

Hi Steph

first I wish your sick friend all the best for a speedy recovery.--Thats interesting that the chromosone anomalies can show up in other parts of the body---complex stuff---The osteoarthitis was an interesting fact as well--I have it in my shoulder but always attributed it to too much heavy workouts, football, etc. Its amazing what science can find out and pinpoint----anyway best wishes and all the best always to everyone on this site.

hugs

Krystal

[Guest erinanita]

Hi Stephanie,

Interesting to hear about your results. When I had my prototype done they counted 43 sets of cells and the report was xxy - 38, xxxy - 3, xy -2. It's a mosaic and, yes, if they had counted more cells it could have been much different. But I have a lot of classic signs and my medical files say I have Klinefelter's. I was always short and stout (pear shaped) rather than tall and thin but I still was the tallest male in my family at 5' 7". I have a constant battle with my weight and that almost cost me my surgery.

Anyway, we just have to deal on an individual basis with each of our other conditions and live with the ones we can't control. I hope that your friend in the hospital is doing well.

(((Hugs)))

Thtufus

[KathrynJulia]

Stephanie

 I was checking the intersex topic and came across your post.  Hypospadias are a significant issue in DES male children along with Hypogonadic Hypogonadism ( low testosterone). I was a DES son as well as XXY on my karyotyping test.  And known I was transgender since age 5.  And I was born intersexed.

[StephanieVikingGirl]

Hi Kathryn Julia,

Thanks for the info.  I don't know for sure, but I very much suspect that DES was involved in my conditions.  I think there are a lot of us here who were affected by DES, especially and/or primarily those of us who were born in the fifties and sixties.  I think they stopped using it sometime in the early seventies, IIRC.  Yep, we certainly do have a lot in common, I also remember knowing there was a gender issue with me at the age of five.

hugs,

Stephanie