Newly diagnosed XXY, 40.

Men's health
1

So.....all I can really say is Finally! Ok, got that out.

I was just told 8 days ago that I have KS. My Dr. Didn't tell me much more than what I read on Wikipedia. I started on trt that day (200ml x 2 a month. I've been searching a lot online but have had trouble finding much information on adults. Can someone please tell me what to expect from taking trt? My levels were 85-110 before (still trying to learn what that means). I've been able to have erections in the past, have been able to ejaculate but no real sensation beyond that. I'm curious about more than just the sex, actually sex is the furthest thing from my mind right now. Any direction or insight would be greatly appreciated.

2

Well you were lucky to have that high levels. My level without the testosterone inhexrions is 34 with injections it is over 350. Usual rate for 46 xy males is over 200 to ?

One xxy male yeats ago was taking over 900 mg of testosterone because that is what he needs it.

During the xxy convention in Aurora, Colorado in June. One symptom may be a slight tremor in your hands. Some research indicates a tooth enamel problem. Or a smaller little finger than your other finger. I have a slight termor meaning I cannot hold a camera steady to take a photo of anyone. My little finger is smaller than my other fingers but I have no problems with my teeth. Every xxy has different symptoms. Most have atrophied testes which produce some testosterone or none. With hormone you can expect more body hair, but not everyone has it. When I started in 1982 at age 29, testosterone increased chest and back hair, but less on my legs

I can grow a beard but no hair grows under my nose, so it is an incomplete moustache. Testosterone will not increase muscle size. I have tried weight lifting but only obtained muscle tone and slight muscles in my arms back and legs. But like I said every xxy make is different. I have over 20 medical disorders including 2 genetic kidney disorders which is why I am on dialysis. I am also a below the knee amputee because of my kidney disorders and diabetes. I am not tall, I am 5 feet5 inches tall (US standards) or 165cm (UK standards) . I have given you both since you did not indictate where you live.

I live in the US in Colorado.

If you have 47 chromosomes, you are automatically classified as having Klinefelters Syndrome at birth. There is some dispute among other xxy's on this forum who think differently than my opinions.

If you look under trisomy 23, or Klinefelters Syndrome , or hypogonadism or 47 xxy on the internet it may give you more information.

I was diagnosed at 29 years old and I am now 66. I have been on testosterone since that time and if you don't get any hirmones, you nay get osteopenia or osteoporosis.

Testosterone comes in injections, A nurse injects my hip every 3 week. It is usually the cheapest. There are gels but they can be expensive. There are pellets. But a new testosterone pill may be out in 2018 according to the man who invented it and was a guest speaker at the chromosome convention in Aurora Colorado on June 24th or 25.

You should expect more answers from the other xxy males on this website.

Welcome to the new world of xxy.

I should tell you most are heterosexual but a few are gay. I am gay, but the majority of the xxy's on this website have women partners.

One individual at the convention told his girlfriend he didnt need a condom because he is sterile and can't produce any. children which was okay with her but a few men haven't told their girlfriends that fact. Only a doctor can tell you if you can or can't have children

I am not a doctir.

Good luck in your quest to find out more information on 47xxy or Klinefelters Syndrome

3

Oh hello,  

I'm at a family gathering in Tolaga Bay, all the people I grew up with are here, and their children, and even in some instances their childens' children.  I have my daughter also.  Of course I'm not supposed to have children, when  was 17 I was diagnosed, and I did indeed have KS, well the beginnings of it.  Being XXY and having KS are not the same things.  Those who develop seminiferous tubule dysgenesis, go on to develop KS, that is the symptoms of the disease STD.  That is why you were diagnosed, and you were not diagnosed before you were, as you didn't have symptoms that anyone could see, then you did develop something.  When you were born you did not have KS as you did not have the disease KS is the symptoms of, in fact I argue that in the modern world KS should never be allowed to develop, and if it does that is a sign of poor medical care.  Doctors need to get off their bottoms and do their job properly.  All boys as they enter puberty, and at the expected halfway point, ought to have their tetes palpated, which will reveal STD, as their balls will be small and firm, if not at age of onset, certainly by age 14.

I don't know what you can expect for the future on testosterone.  It all depends on how clued up your doctors are, and what your response is to the testosterone you're getting.  If you are like me, you'll have the therapy as ordered by your doctor, and nothing will change at all.  

4

This site would be so much better if I could edit my posts!

Even if there was a spell checker!

Or at the very least limited time to edit posts in!  

For 25 or more years I took testosterone for damn near zero results.  It wasn't until my wife pointed out a few things did I question anythng.  I suppose having a wife proved my sex drive was more consistent?  However, if YOU don't tell YOUR doctor that YOU'RE not happy, s/he will assume you are happy.  They're not going to increase or decrease what you get until you tell them what you get is too little or too much.

5

I was diagnosed when my wife and I were trying to conceive,,,,, and it wasn't happening ... We both got examined by doctor,,,, and I was diagnosed with 47xxy mosaic, , , meaning that the concerns,, don't effect every cell. I cannot produce children with my sperm . They say KS, klinefelter's syndrome effect 1 in 500 boy births,,, and it got both of us . Many boys growing up,,, are weaker, than other boys his age . Some boys, men have anti - social problems,,,,, weak teeth,, tall, . If you are on Facebook,, search for Klinefelter's,,,, support,, and join. ....

6

Just to set you right alot of the studies that indicate abut anti social or criminal behavior were done in the early 40 and 50's , in prisons.

That being said, some xxy are extroverts and many are introverts,in my case, I was extremely shy as a child and some times as an adult. Which meant I usually don't know how to interact with other people or men. So that is what I the medical community would say I am anti social behavior.

Like I previously indicated, not all xxy's have the symptoms. One xxy man at the convention stated that his doctor found viable sperm, so that he could possibly have children at a later date, his sperm was frozen, but he was in his 20's and he could afford the tests done.

I am not on facebook, so I can't tell you which ones to check out but you might try the National Institute of Health in the U.S. for information.

This institution has a more detailed block of information on xxy.

You may also want to look up information from Nicole. Tartaglia., she is the doctor in Aurora Colorado who heads up the extra ordinary (Xtraordinary)clinic at Children's Hospital. She has written alot about it and it is on the internet.

Many of the men experienced anxiety, but I did in the past but nothing now. I am a very patient person. If something doesn't exactly go my way, I attribute it to fate. I wasn't meant to do the task.

Usually when you hear a doctor says you can't have children, it is a devastating blow. But in some cases, it works out okay, but medical science is improving every day, so it might be possible to have children in the future or if you have the money to fund it now.

However one of the men at the convention actually adopted 2 xxy boys, because he could relate to them.

Don't be discouraged about what you read about xxy's. I have never been in jail or prison or any thoughts of criminal behavior.

Be yourself. As a child and teenager, I was weaker than most boys because I had no muscle tone because it was lack of testosterone plus I was obese. But at 147 pounds, now, and 5 feet 5 inches tall ,would I be considered obese?

I have some muscle tone because I used to go to a gym and used free weights to tone up my muscles. I can never achieve massive muscles like in the magazines, but at least I think I live a healthy lifestyle.

If you have trouble in dealing with the syndrome, a therapist may help.

I am not a doctor. So I an unable to know what you are experiencing.

I just hope that having xxy doesn't stop you from growing mentally. I do alot research on the internet because something new is always discovered on xxy.

Good luck in your quest for more knowledge about your medical history.

7

Just to mention one more thing

Have you checked out the following on the internet

Adult Management of Klinefelters Syndrome.

It may be helpful.

One speaker at the convention a addressed this very subject.

8

Well, I rewrote the information on Wikipedia, it lasted a good month before it was rewritten again to represent the common knowledge, and I put in references to all my changes, people just prefer common knowledge.  Wikipedia is not a good place for detailed, accurate, information on anything, any topic.  Wikipedia is written by the general public, nobody has any proven talent, or education, to justify being an author on Wikipedia.  All we need is an account and a willingness to edit.

When Klinefelter et al (and others) were writing up the notes of 9 men with a particular form of hypogonadism, that had not been documented before, what do you suppose they titled their with?   It wasn't Klinefelters syndrome that's for sure!     I've never actually seen the original report, that might be a mission to find?  Maybe you'll beat me to it?  Reports written prior to 1959 describe it as Seminiferous Tubule Dysgenesis.  I suppose Klinefleter et al did too?   All Klinefelter did was document reports, he didn't actually examine anybody. He was a doctor, just not a very good one.  And the name 'Klinefelter' is an Americansiation of a German name, we almost 100% pronounce it incorrectly.  

I don't know what 85-110 means.  I have a few clues, but they might be wrong?  Testosterone in the normal levels is a damn near 1000 point scale, so there's a wide range of normal.  There's low normal, most XXY's are found at low normal at whatever age they're diagnosed.  There mid nornal, most males are found  there, and there's high normal, a few males are found there.  I wasn't given a number, although I suppose one has been documented?  I just have a description of what I looked like, and where my LH and FSH levels were.  They were exopected to be high, and they were high.  Guessing I'd say 85-110 was a low normal range of testosterone, but I don't know what scale is being used.  Maybe you can ask your doctor? 

I don't know why you're having 2 injections a month, that seems unusual.

Maybe, when you've been taking testostwerone for a while, you'll report sex as being in the forefront of your mind, where it usually is for normal males?

9

Thanks everyone for your responses. I live in MN, US. I also have most all the signs of ks other than the fact that I can grow facial hair. A VA Dr ran the genetic test 12 years after finding out that I was sterile. I have been on medication for depression, anxiety and add since I was 13. I'm not really impressed by care i get from the VA, but its free. I have messed up feet(which kind of makes sense now) .

10

All my health care has always been free, and it's as good as anybody else can get, well anybody else in England where I lived when I was a teen, tracking down females for sex, being a typical male.  And free in my home country, where I lived most of my life.  Free health care is good, sensible, health care.  Trouble is, even in the USA where most health care is insurance based, XXY's don't get diagnosed at any greater rate.  It's still around 75% go undiagnosed, their entire lives.   Boys balls are just not that interesting for regular primary physicians, G.P's, or Family doctors.  If you're a boy with no balls they'll be interested in you, if you're a girl with balls they'll be interested in you, and if you're diagnosed XXY or with KS by someone else, they'll likely be interested on your balls, but if you look more or less regular, and you have basic pubic hair, they'll assume you're normal genetically. I didn't look normal, unless absolutely no male musculature is normal?  Unless ultra skinny was normal?  So I was diagnosed (or suspected) at a job interview at Ford Motor company.  And the doctor who was most interested in  my balls, and stroking my pubic hair, who was causing me great distress, was in fact the husband of the woman who did my karyotype.  So I think they had a plan, I think she told him what to look out for in males who might have KS, and he set about finding them.  In my speculation, if she hadn't trained him up on what to look out for, I would not have been suspected that day.  Anyway, he wrote a letter, sealed it in an envelope, gave it to me, and said "give this to your doctor."   And I said, "I don't have a doctor."  And he said "Well get one."  So me being ultra naive didn't even bother opening the latter.  I gave it to the surgery of the only doctor I knew of, my mothers doctor, and within an hour he was ringing me himself telling me to visit him.  That was my second job interview after leaving school. I thought it was normal for doctors to ring patients themselves and make appointments.  Little did I know!    Then I had my balls squeezed again, twice in one day, this is too much!  And the second doctor said "We think you have Klinefelters syndrome, we think you have an  extra chromosome"  and the rest, as they say, is history.  

So that's free health care.  

11

Wow. It's crazy for me to try and wrap my head around all of this. The fact that xxy is so common but yet not many Dr s are educated about it. I can't even imagine what I would do without the internet. Thank you XXYGuy

12

Oh and you're ADD?  I'm AD/HD Inattentive Type.  In my opinion, note MY opinion, XXY and AD/HD are synonymous.  (ADD AD/HD) the same too, one is the official current name, the other a previous official name)  But I've never been the HD part.  

Thank you, this is what I say to people diagnosed now, they're so lucky they have the internet. I think XXY's are world class worriers, if it can be worried about, they'll worry about it.    But with the internet, they and their parents can track down information and people.  When I was diagnosed (yawn) there was my doctors and their nurses, and public libraries for information.  I went 17 years before I met another XXY and he was a child, not exactly much in common there!

You can find complete crap, you (we) have to realise science is a regularly updated information service, doctors forget this too.  If we don't constantly update what we know, we're going to get left behind.  So original reports were done on males in institutions, jails and psychiatric hospitals. If you knew you were looking for a medical condition that only affected males, they would be your first place to look for them too.  The reverse isn't true, that males with those conditions are criminally minded or psychiatrically impaired. 

13

Is that convention every year at the same location?What is the name of it?I live in Minnesota.

14

Thank you, I have requested to join a couple groups on fb.

15

And this is the hard part...how am I supposed to know what feels good or to the level of being happy? I have no reference point. Sure, I've been on medication for years. But now I'm questioni what happy is. Is there a test?

16

A happiness test  I don't think there is one.  I was wanting a more mature look, like any teenager wants, it just didn't happen fast enough, it took years longer than normal.  It spins me out that doctors knew you were sterile years before they bothered to check your chromosomes.  Being sterile has to have a cause!  And I'd be asking that's a certainty.  Up until I was diagnosed I just assumed I was fertile and I was on the lookout for a suitable partner.... that's a plan I had since I was 14, I recall.   When I found out I was sterile, I had this giant problem on my back, what to say and who to say it to, how much information to give to start with. What if I'm more serious about a girl than she is about me?  This is just added pressure!  And it wasn't like my life was a breeze before then, there were lots of problems I had no idea were associated with being XXY.  I had no idea XXY even existed! AND even WORSE, I loved Human Biology, I had the basic knowledge of chromosomes.  Extra ones only cause mental retardation or death, and since I wasn't either of those - well - why would I think of chromosomes?

So.... happiness was elusive, it turned out.   I had to make changes.  My happinesss has revolved around my daughter.  That she exists is a major bonus for me.  Got to go now, that daughter needs me, to driver her 200 k's.  

17

Please note: I had a bone density test on August 2, 2017, my doctor informed me that I have osteopenia Bone weakness. I don't drink alcohol or smoke any type of cigarettes or any drug. I currently take 2000 units of vitamin D every day and 50,000 units once a week.

But due to dialysis treatments, I don't eat alot of cheese or milk anymore because if I don't take my binders,(Renvela), I itch from head to toe, intensively, to the point I cannot sleep or do anything else to stop it, unless I take benadril.

My doctor suggested taking no more than 1200 units of calcium daily, which I will take once I buy it at the store.

The internet stated it could be genetic but both my mother and her mother may or may not have had it, but they are no longer living today. No one else has it that I know of.

It is one more test to check if you have it, as a xxy male. I didn't get hormone replacement therapy until I was 29 when I was diagnosed in 1982. So maybe that's why I have osteopenia now.

Does any one has an answer to this question ??

18

I see the question, I just don't see the question mark.      Osteopenia is the disease that isn't.  That's how I describe it from my purely patient perspective.  If you're diagnosed with Osteopenia and you don't take Testosterone (or Oestrogen) therapy, you will get Osteoporosis.  That is a disease.

I don't know if you needed testosterone before you were 29.  Do you mention how much testosterone you take or took?  If you were 29 in 1982, that was 35 years ago, so you're 64 now, if you've maintained the right level of testosterone therapy I don't know why you would develop signs that Osteoporosis was developing, as that's what Osteopenia is.  You're only a few years older than me, but I was diagnosed in 1976, starting therapy in 1977.     So why did you have a bone scan now?