What does it feel like to have Klinefelters' syndrome?

“Do you ever feel like a failure of a man?”

Staningstin

That's a curious question.

First I thought about it.  Then I wondered who’d ask such a question, having not seen your name anywhere before, and you only just arriving here with that name less than 24 hours ago,  I probably do know you, or know of you, and you have a particular reason for asking it.  I mean why not ask “....failure of a human being?” are we all not human beings first?

Then it’s ‘do you’  rather than ‘have you’  so your question is present tense, but ‘ever’ is all time. So do you mean “have I ever?” or  “from recent events do I?”  then I’d have to be informed as to what those recent events are.  Looking back over my entire life can I recall a time where I felt like a failure, well of course I can.  However over my life I’ve come to learn that my feelings of my worth as a human being are rarely accurate.   I have determined not to live my life by my feelings.

So, with qualification, depending on what you're really asking and why, yes.  What do you want to know for?

 

James...

I'm not very good at the whole message board thing... and I don't read it often. But I happen to be up tonight, holding my little 2 year old who is XXY. (Strep throat and a stomach bug... gonna be a long night.)

It breaks my heart to read how you're feeling... I'm so sorry you're feeling so down. My experience with XXY is admittedly VERY limited so far. So I won't pretend to completely understand. But I do know what it's like to feel like I'm failing in life... like I am less than I should be. In that, you are definitely not alone.

As a mom, I want you to know that I've never felt sorry that my little XXY guy can't give me grand children. I've definitely shed some tears over how that will effect HIM... but i am hopeful that he'll find love and joy, in whatever way he sets out.

I have 4 older brothers. Only one is a father. The others are amazing uncles and pretty good people, in general. I also have a husband who is an amazing stepdad to my bigger kids, biology aside.

I truly believe that you are bigger than XXY. I know it's gotta be terribly hard in many ways... and my heart aches with yours... but it is not the sum of who you are. Just a part.

My little one literally saves me every day. He saves me from myself and from my tendency to be my own worst critic. When really, we SHOULD be our own greatest cheerleader! (I'm working on it...) But this kid... oh man... I couldn't breathe without him. He's beautiful in every way. I'm sure you are loved like that, too... even when you're not feeling it.

You are not alone.

And you can do hard things.

You can do this.

James, I want to find you, I want to be with you, I want to talk to you, and all I have it this useless medium,  I can't give you that great big hug you need right now.  Now I feel useless.   Yes I do know what it feels like to sit in a doctors office and have him tell me it's no big deal, or he can't understand why me (not him) being steile is such a big deal.  He thinks I'm like him, that my life was like his, all he has is his experiences and he thinks I had something similar.  I had nothing similar. 

Over the years since then, I've gone from up and down to another up and down, but I'm used to it, that is what I expect now, nothing is going to be great or terrible forever.  The only way you can experience that knowledge is to live.  

My parents knew of my diagnosis before me, the GP I went to spilled the beans even before I knew he had. He didn't tell me what he was planning and as I was legally a minor he had no obligation to inform me of anything.  I can still remember the conversation we had where he could have told me what he was going to do but didn't.   That was when he told me if I ever wanted to talk about anything he was always available.  Back then talking was not a strong  point, it was not something I was likely to do even with my own family, so I was hardly likely to talk to him.   I was 17 then.  Weeks later I found a letter in my parents kitchen where my grandmother was consoling my father, like it was a problem he had!  It was insulting.  Not only were they told before me, they were spreading it round he family without my knowledge.

I wasn't fully grown when I found out, I wasn't a man, I was a teenager.  I knew I was behind my peers, I had been behind for a long time and I just thought it was normal.  Even my best friends' mother commented how unusal it was that I had no body hair, and her son (my friend) was covered in hair, and he was a year younger than me.  I just flagged it off by saying 'everybodys' different.'  That was two years before I was diagnosed.

So from the time of my diagnosis, my own studies showed me that I needed testosterone therapy, and I was asking my Endocrinologist for it long before he gave it to me, I was over 18 but under 19 before I got it.  For me getting started on testosterone was bloody hard work, not the automatic therapy others have described. 

Yes I did decide to do away with myself, many times.  Obviously I'd been a failure most of my life, and at that I was a failure at too.  I don't think it's worthwhile to describe the events.  I don't want to give you any ideas.  I think you need a really good counsellor, but first you need to  think about yourself better.  Can you find someone to ask this question of "Do you think I'm happy?"  I have a fella in my house right now, he knows I'm XXY, I just asked him that question, I find others have a better idea of how I present myself than I do much of the time.  He says I come across as happy.  

I'm certain if I described all the events where I tried to kill myself I would not be very happy at the end of it, so this is my self preservation technique in action.  

Think nice things about yourself. Say nice things to yourself.  Be kind to yourself. 

   

I have to think back a long time here, after being confronted with the initial suggestion, getting over my parents being told before me, them telling the wider family without my consent, me looking it up in the library and reading how I was supposedly mentally retarded.  I went and talked to my former Primary School teacher.  She had no idea what I was talking about, so I showed her, tiny testicles.

I suppose most guys don't have a really trustworthy friend like her?  I wan't prepared to show oiff my balls to everybody I met, and wanted to tell,  and after a while I just set about killing myself.   But that's not the direction I want to lead you.  From my perspective your response is not unusual, but it doesn't have to be that way.  

The people here, they had the same sources of information I had, and after a short while it became apaprent no-one was ever going to believe me so I stopped talking.  I wasn't very talkative anyway, so this topic just went the same way as every other topic. I didn't talk about it. Now, all these years later,  I got the confidence to speak, I educated myself.  Maybe you can take the time and do the same?   From what you've said, you're not that dissimilar to me.                    

When I told my doctor about it, he ran tests on me and found out for himself. He had no idea what kleinfelters was. He had to study the syndrome in order to treat me. I get testosterone shots every 3 weeks. I dont hide the fact I have it because families that are trying to have kids wonder why they can't have kids. This is maybe why they can't. I have heard of men with kleinfelters being able to have kids, but in my case I can't. I have zero living sperm. Some men have low sperm. One in 500 males have kleinfelters syndrome. Usually in black males. I am a white male. Diagnosed in 1992. When I was 38. Getting married for the first time. Hope this helps in some way. Thank you

Nope, there isn't any variation of incidence of XXY by race.  And.... we don't know how many XXY's go on to develop KS.  I suspect it's very high, but one way to prove it would be to let the prenatally diagnosed develop KS before they get therapy.  That poses ethical problems.  XXY and KS are not the same things.  I don't hide the fact I'm XXY to prove we don't all have that pear body shape, we don't all have the same symptoms,  and just because a symptom is common is no guarantee every XXY will have it.  I find it quite intriguing to hear an XXY child tell me how his hips are wider than other boys' hips, when puberty has not started.  Boys and girls skeletons  are identical prior to the onset of puberty.     

I tried taking the shots after three injection I could nt take the pain. After three years

I still feel it. On a T cream costs $42.00 (us )lasts about 6 weeks. Does it work.

I feel energized but I m still chubby and no way in hell can I achieve an erection.

Thee other situation's depression learning disabilities by polar and all the wonderful

Other problems associated with KS is so difficult to deal with on a daily basis. Will be 65 in July

Its a miracle.

Unfortunately exogenous testoterone will not make the chubbyness go away,that's something you need to work really hard at,but it may through the process of aromatisation (where testosterone the body does not utilise is converted to estradiol) cause you to gain more fat,indeed if you are not active and eating a healthy diet it most definitely will. At 65 years old,can I ask why your doctor prescribed this for you,as your other health issues seem suggestive that he shouldn't have ?

Can I dive in here?  Great comment I hope it's not deleted?        As men age their testosterone naturally goes down.  What is natural decline?  What happens with XY men with low testosterone when they age?   What therapy we get when we're younger is linked to what level an XY man has at that age, so I presume it will be the same when we get older?

So are all XY men denied a sex life when their testosterone lowers in older age?  I don't get that impression from the internet. I get the distinct impression XY men are treated with testosterone as they age and their naturual testosterone lowers.

What does it feel like? You feel sluggish and like you can't get out of bed. I do anyway. Until I get my shot I feel crappy. I was diagnosed in 1992.

A problem I've had, on and off, over the years of therapy is medical professionals deciding from their prejudice that I don't need testosterone, and other medications directly associated with me being XXY.  

This is a current problem I have right now.  Some of these people seem to be under the impression that if I take medication for whatever number of years, then I suddenly don't need it anymore.  "I've had my quota."  "Others don't take it at the level I do."  "Others aren't diagnosed at my age."  All sorts of nonsense arguments that have nothing to do with me.  The latest excuse is "the rules say...."   phuck the rules!   The rules aren't made with me in mind.

Tell me this, where werer you and what were you doing that caused you to be diagnosed?

 

My diagnosis came in the form of a physical before I got married. My doctor at the time noticed I had no facial hair, chest hair for a man of age 38. He decided to run some tests on me as in my testosterone level and my body was producing none. They ran sperm counts. Again nothing. As soon as they started to give me injections of testosterone I grew facial hair, chest hair. I had small testicles. That also was in question. I went down to henry ford hospital in Detroit for some extensive testing and was diagnosed with K.S. The specialist said it had nothing to do with my family history but just shows up in males. Mostly black men. 1 in 500. Mostly black males. I am a healthy white male. I also started to get tan inside the house. It was like I was in a tanning booth. To this day, I still get a tan being inside. I hope this helps someone understand our syndrome a bit better.

Oh look we have a link, well a few.      I was suspectred as having KS at a job interview, the medical side of it.  It was at the Ford Motor Company, Seview, Lower Hutt.   I was previously working at General Motors but the doctor was away the day I started, so the medical wasn't done. but I was told they usually did do a medical.  

I'd had medicals before, but my mother was always present and they didn't check my balls properly for that reason I think.  I was found at the very first medical my mother didn't attend.  At the time I weas really skinny, and had noi body or facial hair, and surprise surprise, the geneticist who did my karyotype was married to the GP who diagnosed me.  So I think he had a special interest, he was looking out for XXY's or males with KS as he would have said.  

One time a couple of years ago I was on a Google forum for AD/HD children, and one parent described her son physically, and how he was getting very tall,  I suggested he might be XXY and sure enough he was. Telling people we're XXY is a good way to get the undiagnosed diagnosed.      .  

i have never been sluggish more the opposite nevre sleep longer than 5 or 6 hrs and full beans when wake up still at 61 the same. most people tired and i am still going  when we go hiking i have to wait for everyone else.

 

Alot of men/boys go thru life not noticed . I dont really understand that either,,, cause if you look different than other boys/men your age,,, you me will stand out . Small balls,, and penis . I was diagnosed, after trying to conceive a number of times and it wasn't working,,, so that was aprox in my early 30s .

 

I think I was diagnosed because I was so skinny. It may have been

Pure luck too? It was a job related medical & the GP was married to the geneticist who did my karyotype, so I think he had a plan.