KS diagnosis

Thank you for the quick response. My doctor didn't do any physical examination, just the hormone test. Is that enough to conclude anything? What other tests did you undergo? 

I'm a mere patient, I can tell you my experiences and that's it really.  I'd expect a physical examination first, not that I enjoyed having my balls crushed, they call it 'palpation.'  And it doesn't hurt, not one little bit, according to them!  

I think you've been fobbed off personally.    I think you can reliably get an indiaction if you have some form of hypogonadism by a physical examination, which is the cheapest test you can have.

The reason for doing the testosterone test was the size of my balls, my testosterone came in at low normal, or within the normal range for males at my age then, 16 or 17?  I have read that low normal is typical, regardless of the age of the patient, for XXY males.  My gonadotropins didn't begin to elevate until I was  over 18, by a few months.  And that is when I was started on hormone therapy.

As an aside, the whioe notion that XXY's are automatically started on testosterone as soon as they're found to be XXY is alien to me.  

Hi John, that's really interesting.  My reading says the average erect penis is 5.0"  post puberty.    I'm longer than that.  Everybody I've had sex with has commented on how long I am, even though I believed the propaganda that XXY's were supposed to have a smaller than average penis.  

One day I was buying condoms and the Chemist I went to said they only has condoms for Asian men, and since I believed I was so much smaller than a regular Caucasian man, I thought a box of condoms for Asian men would be ideal.   That was a mistake, I couldn't get them on.  I need a regular size condom for my regular size penis. Oh and that's how I was at age 12, so at the start of puberty all my testosterone went straight to my penis I gleefully explain to all who ask, and plenty do ask.  

Sorry for mymistake. You are correct. After I checked on the web, it states that the average erect penis is between 5.1inches (12.7cm) To 5.6 inches (14.2cm).

Erect Circumference measures 4.8 inches (12.2cm).

My penis is lower than these statistics at 4 inches ( around 10 cm)and I still haven't measured my circumference but it is smaller than 4 inches.

As I stated before, every xxy male has either a small or large penis depending upon when they got adequate sex hormones, during puberty. If they did not ger hormones during puberty, like myself, I started hormone therapy., when I was 29, so my penis did not l

grow any larger.

Also not all Asians are small, that is a misconception.

"Also not all Asians are small, that is a misconception."

I don't think Durex produces condoms for a misconception.     And with the Asian propensity to eat soy, over many generations, there's good reason to believe most Asians have a smaller penis than most Caucasians, and of course there are exceptions to the rule.    The misconception is that penis size has anything to do with fertility and the Asians prove there isn't, they being the most populous pesons on the planet.  

Durex never heard about this product. I woder if it is only sold in the UK. I will have to check here in the US. Thanks for the information

Like I stated before, my testosterone levels were never checked. My problems were my balls were ascending or retracting inside of my body, constantly. A crushing and painful experience everyday.

.My balls were never examined by a doctor maybe because my doctor was a woman. My FSH and LH hormones were normal.

In 1982, she got a buccal smear which is a scrapping inside of my mouth on my cheek and a blood test or a karotype.

The results indictated that my chromosome pattern was 47xxy.

The only time my balls were examined by 2 doctors is when I decided to have my balls surgically tied down which is called orchiopexy. They tied them to the bottom of my scrotum. My balls still try to go up but cannot go up into my body, anymore.

Those two doctors also determined that my penis was of normal size. At 4 inches or 10 cm, as they stretched it when I was flaccid or soft. That only occurs when I get an erection. Otherwise, my penis size is 2 inches. or 5cm, not erect. My girth which is 10 and one half cm, soft and only 11 cm when erect.. Also, I am circumcised, I have no foreskin.

Every xxy male sex organs size varies. It depends if they got testosterone during puberty. I started testosterone injections when I was 29, so my sex organs did not grow like other men my age

Some xxy males are obese while others are thin or somewhere in between. Some xxy men may have diabetes or a number of other disorders. I have over 20. Plus I am short stature at 5 feet 5 inches or 65 cm. Plus I am a amputee. I have a below the knee amputation on my left leg and no toes on my right foot. Plus I go to a haemodialysis center because my kidneys failed due to a genetic kidney disorder. Two genetic disorders so far.

But at least I am not a depressed individual at this point in my life at age 65.

It is not the end of the world if you are diagnosed as a xxy male.

Growing up , I always felt different.I didn't have the same feelings like others my age. Sometimes I felt like I was supposed to be a girl because I wanted to be with another male, but then I discovered the term homosexual In a library book. That's when I knew I was different.But after the buccal smear and blood test, I finally found out why I was different because from that day on, I was truly an xxy male.

Totally different than a ordinary 46 xy male. I have met only one gay xxy male at a xxy convention but most xxy males are heterosexual. On the internet, I have discovered that some xxy males change sexes. But I am satisfied to be a xxy male.

Like I said before, only a doctor can determine if your are an xxy, through a blood test, buccal smear, testing hormone levels or checking ball size.Every doctor or clinic uses different methods

I am not a doctor.You have to decide which medical test you want to have done. to determine if you are or not a person who has 47 chromosomes., or an xxy male.

"My balls were never examined by a doctor maybe because my doctor was a woman. My FSH and LH hormones were normal."

No I don't think so, I think most doctors just don't care about male sexual and reproductive health. I had male and female doctors refuse to examine my balls, and I thought that was because my mother was present, and I'm encouraged to believe that is true, as I was discovered the very first examination where my mother wasn't present.  Howeveer that doctor, a man, was married to the woman who did my karyotype. I think he had a special interest.

"In 1982, she got a buccal smear which is a scrapping inside of my mouth on my cheek and a blood test or a karotype."

So I would say until 1982 you had incompetant doctors, and probably a lot more after that date?  After I was diagnosed the doctors couldn't leave me alone, they were all for testicular palpation after that event, and because I was younger, and was on testosterone (and I had to see doctors to get testosterone) they made certain I had erections too.  In fact I renamed my injection from 'testosterone injection' to 'erection injection'  as even nurses would insist I responded before I got it.  Maybe I just have a really good looking erect penis, it's also not small, maybe that was a reson they wanted to see it erect?  The literature at the time, and today, says XXY guys have a small penis.  

"The results indictated that my chromosome pattern was 47xxy."

That statement suggests to me she did a Barr Body test.  That's the oldest and cheapest possible 'chromosome' test there is. What it shows is the shadow of the inactivated X.  So a person with female genitals ought to have 1 Barr Body, and if a male has 1 Barr Body then we know for a fact he's XXY, people with male genitals usually have no Barr Bodies.   

"The only time my balls were examined by 2 doctors is when I decided to have my balls surgically tied down which is called orchiopexy."

I don't know if you're lucky or unlucky?  Testicular palpation I found to be the most uncomfortable examination I'd ever had.  Having a very small scrotum with 2 pair of balls within doesn't leave a lot of scope for error.  I'm sure they were palpating my epididymis too, which is most difficult.  But I was assured it was all in my mind.  Of course it couldn't be they were doing it wrong!  

Your experience was totally different than mine. In fact, my balls were examined when I was 14 or 15 (in 1965 or 1966),by a doctor and he said they looked and felt normal. No blood test was ever performed . My experiences occurred at a low income clinic, so most tests were minimal. My female doctor asked me if I ever had a karotype test. I didn't know what kind of test it was, so after my doctor visit I looked up the word at the library. Since I had no complaints regarding my balls, may have the reason she did not examine me. Years later, I knew I had gotten bad medical services at that low income clinic.

At that time in 1982, my LH and FSH, was never tested. However, I.should have told you my fsh and lh hormone tests are still normal, they were tested in 2013, at a better clinic.

After I was diagnosed in 1982, I was put on 200 mg of testosterone every 2 weeks but I constantly got an erection, so without a doctor's recommendation, I started getting injections every 3 weeks, no more instant erections.

Also

My testosterone injections varied throughout the years at that low income clinic. At one point, they discovered my testosterone levels were dropping before the next injection, so the doctor increased it to 300 mg every 3 weeks, however, my hematocrit rose over 50, which means my blood thicken to the point, where I could get a heart attack. So, I was recommended that I had to have a pint of blood taken out of my arm, to prevent heart problems. My cost was $75.00.after each injection.

I finally asked the doctor to put me back on 200 mg every 3 weeks to avoid the cost of the blood draw.

Then when the testosterone scrotum patches came out, I liked them, but I had to shave my scrotum so that the patches could adhere to the skin Since my scrotum was small, I had to wear a jock strap to hold them close to my scrotum skin. Then my clinic discontinued them, I was told to try the androderm. patches which were to be placed on my upper thighs. I tried to use them for 2 weeks. However I underwent a severe reaction. I was allergic to the glue on the parches and developed hives. So my only option was to go back to the injections, 200 mg every 3 weeks. My hematocrit is now below 42.,so no threats of heart failure.

Maybe all my problems could have been resolved if I had gone to an endocrinologist that specialive in hormone disorders, but at the time I was not smart enough to know there are medical specialists that could gave treated me better.

I assume in the UK, you got better care. Being in America, if you are a low income individual, you don't get the best medical help. Sometimes, I wondered if only I knew there were resources out there in the world that could help. But living in a low income area and being low income, we don't usually get everything that the upper income people get.

At this time of my life, I have a better medical insurance that I like and I have been told it is better than most low income individuals. I retired from a US government agency, so I am able to pick and choose from several different medical plans.Not everyone in the US has that choice. The UK medical fields are probably better than the US, in the past, now and in the future.

You were lucky that you got the best medical care at the time of your diagnosis.

Sorry you didn't like my previous response on this forum

I.presume you are an intellectual person. Explaining my personal experiences, but I don't mind because you are probably more intelligent than I am.

Some xxy's are intelligent and some are not. I am in the latter group.

Most of my posts come directly from the internet, even some of my word spellings on this forum.

But my medical disorders that I given on this forum come from the clinic that have listed my 20 or so medical problems, I only copied that information onto this forum. Most of my medical problems, I had to look on the Internet to find out the meanings for example arthrofibrosis. At the time I was diagnosed, I had no idea what it meant.Only by researching on the internet did I discover the meaning of that medical term. I still have that medical problem, my left leg does not bend like my right leg. It is locked into one position. I have had a medical procedure to correct it, but it didn't work .

So I am sorry I am not as intelligent as you are. Thanks for explaining details I am not familiar to

Instant erections are normal for teenage boys.    They're also normal for young  men.  In 1971 I was 12/13  and I was supposed to have my balls   checked properly as I had a medical before I was to go to England to live.  My mother was there and all the docotor did was touch my balls with his fingers, whilst my pants were still on.  So he slipped his hand down inside my pants which was weird, I wasn't expecting that, there was no warning.  If my mother was asked to leave the room maybe he'd have got my pants off completely?  Anyway it is perfectly conceivable that my balls had not atrophied at that time.  They hadn't atrophied before that time as a neighbour had wanted to see them, and they were definitely bigger and visible.

Maybe 2 years later in London another female doctor was performing medical examinations of all the boys, and I suppose girls too, and the others said she checked their balls but she didn't check mine, and my mother was present. As far as I could tell she was the only parent present.  Again there was no warning, I had no idea examinations were taking place that day.  I just assumed no-one else knew about it either as there was no discussion beforehand.

I consider my balls were working in early puberty as later studies I've read also indicate.  It's not an exact science, I don't know if any science is exact?    However we know SOMETIME after the onset of puberty the balls of XXY males atrophy.  When that 'sometime' is we don't know.  

When I was first examined by my  Endocrinologist at 17 I had less than 1.0ml in volume balls.  That's less than the smallest size on the orchidometer.  So they're recorded as being 1.0mls  as that as low as the meter goes.  

By 17 they had atrophied, yet my FSH and LH was recorded at normal, and my testosterone at low normal.   So tiny balls do not directly equate to elevated gonodotropins, or testosterone deficiency.  

I had to wait until I was over 18 years to get on testosterone therapy, that was on the  7th or 11th of October 1977, which was only a single 100ml injection of (forgotten the name of) testosterone @ 100mgs to the ml.  And apart from the pain of getting it, I noticed absolutely no effect at all. 

I think you're assuming wrong.  There's an XXY guy in Australia who won't talk to me because I'm not university educated.   But that has to be his problem!     There is nothing stopping anybody with any medical condition from investigating it, and sharing what they have learned.  I don't need to be a genius to do that!  

I have a pretty high IQ, not massivelty high, high enough.     According to one study I read I'd be 15% smarter than I am if I wasn't XXY!     I can go back to primary school reports that say I have an excellent vocabulary for my age.  I just couldn't read out loud, or learn without having any subject gone over with me in fine detail.  I need one on one teaching.  Later in life I learned to be my teacher.   Anything I didn't understand I went to the library to look it up, which is what you did, so you must be pretty smart too!  I also had the ear of my Endocrinologist who'd correct me when I got things wrong. 

I like the saying "If you've never made a mistake, you've never made anything."  

I don't know why you have all the medical conditions you have, or have hadf?  IMO if I have a medical problem I get it fixed.  If I can't get it fixed I forget about it.  All the things I can change, I have changed.  I don't at all mind taking medications. If one medication doesn't work I'll move on to the next one.  

No I am not British, or American, or Australian.      I worry a great deal about American XXY's  as I consider they live in the worst country when it comes to adequate health care.  Curiously it is the Americans who determine how  we're all to be treated.   How much testosterone we all have at whatever age, they give the guidelines to.   If we have brave doctors they will override the American recommendations, if they are deemed necessary.  Mine did!     

I also have a series of letters between my then GP and my Endocrinologist arguing about my testosterone therapy.  My GP diosagreed with the level I was taking, but he didn't have the authority to prevent me from having it. He liked feeling my balls too, and he was the major opponent I had to getting them removed. I supposed he knew that when they're gone he'd have nothing to feel!  That didn't stop him though, he still liked to 'touch me up' to make sure the operation was a success, I suppose?  

You don't seem mentally retarded to me.  Therefore you must be intelligent. So, all your job now is to recognise how smart you really are.   

I don't understand at all why you'd have blood taken for thicker blood.  I take aspirin to thin my blood.  I also take medication for a psyciatrtic illness that should make my heart race and increase blood pressure, however it doesn't do that.  It's weird.  I am different to most other people.   I didn't always have this medication.  I should have had it in school, but it wasn't popular then to diagnose children with psychiatric diseaes.    I think my life would have been much more normal if I did have it.  

I didn't thinkl I was strange, I thought everybody else was strange, well almost everybody else.  My usual one and only friend in any given year wasn't strange.  We were the two normal people in the world.   I thought most other people didn't like me because I was ugly, and my friend didn't think anything of how I looked.  When my adult teeth came they were huge, with a mnassive gap between the two front teeth.  Normal people are supposed to have 34  adult teeth, I had 17.   As puberty set in all children have a gwaky stage as their bodies change, my body stopped developing at that gawky stage.   So I finally looked the ugly I always thought I was.

It wasn't until I was in my 40's that I determined I wasn't ugly at all, and I never was.  I just had a negative outlook on my life, for pretty good reasons.  

According to my reading XXY guys do very well in stable, non abusive homes.  A stable abusive home is not a good compromise.