When is 47,XXY not Klinefelter's Syndrome ?

The 'funding' always comes from the same place, the patients of course! An obese man goes to a surgery, the doctor can see obesity plainly in front of her/his face, no examination necessary. And inquisitive doctor might ask 'why is this man obese?' The patient most likely won't for certain know other than he eats too much.

My opinion on my medical condition that I'm treated for has nothing at all to do with whether or not a doctor is competent enough to ask questions of patients and ascertain a reason for their presentation. There is simply no defense for laziness.

But I must point out as it is so pertinent that a medical doctor did have his hand inside my pants when I was 12 and was feeling my genitals, and did know I had pubic hair and could have an erection, and my foreskin did retract, all without using his eyes. So why didn't he have me remove my pants and have a proper look, since he was prepared to do all the touchy feely stuff? And is funding and my opinion are of such great value, that after I was finally diagnosed at 17 every single time I went to the doctor for ANYTHING I had my balls squeezed? If time and urgency was of such great importance surely reexamining a known patient MUST be considered as waste if time and money!

In reality men's and boys sexual health is very low on the radar of the medical profession generally, it takes a special kind of competent doctor to do his/her job properly, the special type I contend to be the professionals.

"So reading your insistence that you are XXY but not a KS sufferer makes me sigh with frustration because like doctors you have become blinded by rhetoric you patently cannot see the wood for the trees."

Well I would be a KS sufferer if I didn't have the medication to alleviate the symptoms of disease, as that's what KS is and means, SYMPTOMS OF DISEASE. If there are no symptoms of disease, tell me how am I suffering from KS?

In reality it makes no difference what *I* believe, it's not MY beliefs that are in question, but the activities of the medical profession. That is what caused you not to be diagnosed, not my opinion.

I posted a link to a PDF file which is still awaiting moderation ... I think you need to read it...so there are two ways this can be done either I send you the link privately or I give you the title of the work and you link into it...

The title of the work is New Concepts in Klinefelter Syndrome... Paduch et al just make sure you find the PDF and not the abstract which tells you nothing.

I used to vent my fury every time I read about doctors not knowing this that or the other about any particular condition...until I came to realise that its not so much the doctor as their sources of reference and if those sources are endorsed by the NHS then it becomes an NHS failure. However another factor to consider is the changing parameters of each individual study for even Dr Ratcliff once wrote that typically in childhood KS will have a head with a smaller circumference ...

I'm reading it, these days I accept that UP TO 50% of XXY males alone, NO OTHER karyotype, may have some sperms in their testes, but the figure is most likely 30% or less. It just depends on which report one reads. So yeah very good, I know what naked men with XXY and KS look like, I also know what I look like naked, and you can know too if you search Graeme-XXY on Vimeo. I do not have the symptoms of disease as described by Klinefelter et al, I do not display KS. I am still XXY though. And the link I sent you is to comments by Dr Arthur Robinson talking about XXY newborns. So XXY boys are not born with KS as they have no syndrome, I wonder when they suddenly develop it then, after puberty I reckon.

"I used to vent my fury every time I read about doctors not knowing this that or the other about any particular condition...until I came to realise that its not so much the doctor as their sources of reference and if those sources are endorsed by the NHS then it becomes an NHS failure. However another factor to consider is the changing parameters of each individual study for even Dr Ratcliff once wrote that typically in childhood KS will have a head with a smaller circumference ..."

As far as I know small head circumference is a noted feature of XXY boys, it's just got nothing to do with hypogonadism, KS is a form of hypogonadism not related to XXY boys at birth or any time before puberty. If it did have anything to do with hypogonadism it will be a feature of males and females who were born with Kallmann syndrome, who can even be hypogonadal in the womb!

I don't vent at anybody, merely keep repeating the obvious.

So how were your testosterone levels affected at the time of your diagnosis and when treatment commenced? I've just been reading 50megs btw

That must make me a freak then cos looking at a pic of me aged 3 and at another of a much younger me being bathed in the kitchen sink my head certainly wasn't small in circumference if anything it was larger than normal much like it is now ;-)

Testosterone on it's own means nothing at all. It is the relationship between testosterone, LH, and FSH that determines a doctors course of action PLUS what the patient says.

You're assuming that your head circumference at birth and at 3 was unaltered from birth, ever heard of growth? But what you say kinda emphasises the point Dr Robinson was making, if the symptoms aren't there where is the syndrome? There may be some characteristics at birth that are relevant and others that are not?

So XXY boys are not born with KS as they have no syndrome, I wonder when they suddenly develop it then, after puberty I reckon.

I believe that KS needs to be reclassified as a spectrum disorder ... typically I read that chest fat and central mass obesity tends to manifest itself around the age of 13-14...I had slight signs of both from a much earlier age which worsened or I became more aware of it when I entered puberty aged 11...the central mass obesity manifestation only effects approx 44% of KS to varying degrees and even though it is widely associated with diabetes as yet I show no signs of developing it.

My voice broke when I was about 13 so no I do not have a high pitched voice though my shaving frequency seemed to freeze somewhat around 15 yrs old and restarted at 17. I was always tall 4' 7" at the age of 7 and nudging 6' at 14 at 17 I was 6' 3" and stopped at that height.

My legs are longer than my body and my arms well if I stand with my arms at my sides and cross them in front of me then they cover my crotch so they seem to be reasonably proportioned. Muscle development was poor regardless of all of the futile exercises. I had body hair mostly across my back with some on my chest and for a time in my 30's I had a full face beard.

The crux for me was the definition of my t level being moderately low at 8.1nmol/l but looking at everything that manifested over the years this to me indicates that had I not carried this affliction then my healthy bodily requirement was likely to have been above the so called average for a man aged 45 which is 15nmol/l. The definition of moderately low seems to stem from the low normal range for a healthy non KS male at 9.41 ranging to 41nmol/l but the chances of getting that changed even on an individual basis look extremely unlikely.

There was a period of 5 yrs when I injected myself with sustanon 250 every 9 days because I had documented how my body responded to getting the injection every 14 days ...typically I saw no improvement for 3 days and my negative reactions started to reappear after a further 6 days all the endo that I was under agreed to doing was for me to have the jab every 10 days but frequently it turned into 11 days and sometimes 12...so when I moved to a new area I started injecting myself after some 6 to 8 weeks I noticed a massive improvement in my symptoms which lead me to suspect that I had an underlying condition that was t related such as mild anaemia though my height loss of 2" in 3 years points towards the possibility of Osteoporosis which incidentally I was not tested for prior to TRT commencing. Typically height loss is .4 of an inch every decade after the age of 40.

Anyway I was monitored by another Endo in my new locality though he kept trying to get me to reduce I was stubbornly refusing to comply...for ref on Day 0 my t level was 20 on day 5 it was 39 on day 7 it was 22 then on day 9 which was also day 0 it was back to 20 my metabolism was processing t quickly without any adverse reactions. Realistically I could have dropped down to a 10 day or even 14 day frequency but I was scared of the symptoms reappearing and its impossible to test for conditions after an event.

Contrary to written opinion that I have seen in numerous articles this excessive dose of T did absolutely nothing for my poor muscle development though my frontal figure became more like a V and less like a U. I suspect that passed a certain age for example 45 that the likelyhood of muscle development is almost non existent if it had not previously existed and that without adopting a regime that is specifically tailored towards body building then nothing will change.

I've been self injecting for he past 10 years or so, It's no big deal, it's just what I do. Everybody's different and ought to have a different regime, whatever suits them is best for them. I do have a bit of fat round my middle just keeping pace with most other men my age. It's got everything to do with my lack of exercise and eating habits and nothing to do with being XXY. I have met in person hundreds of XXY and variants and over all, over all ages, I'd say they're predominantly skinny. The men who are not diagnosed until later in life tend to be the fat ones. I have met 1 7 year old XXY boy who was obese because he also has Prader-Willi syndrome. I think I have a standard body shape for a man my age, and when I was diagnosed I was asthenic, super skinny. Gaining weight was very difficult for me. and my diet was a constant source of arguments in our house. I just wasn't hungry, I ate to live, not lived to eat.

KS is the symptoms of disease and in all diseases the symptoms are variable between patients. Why XXY guys think the diseases they're treated for should be any different I have no idea.

If an XXY guy wants to gain muscle he needs to exercise along with his testosterone therapy, if the therapy is insufficient or the exercise is insufficient muscle will not be gained. The older a man is before he gets hormone therapy the less likely he is the develop more musculature. This is because XY boys have an ever increasing level of testosterone that coincides with their level of expected activity and the gain muscle as a result of the exercise they do in early puberty and throughout puberty. XXY guys puberty usually stalls soon after it begins and their ability to gain muscle fades away.

Of course not all boys have the genetics to gain muscle, no matter how hard they try, so why XXY boys should not fit within that spectrum, again I have no idea. There ought to be some who can easily gain muscle after therapy is initiated ad others who find gaining muscle very difficult.

I guess posts can be removed by somebody? I got a notification that there was a reply here, something to do with head circumference and arm span. The most telling feature of XXY/KS is small firm testes, getting back to where I began, the very physical examination doctors are most unwilling to do. And just today on the news was a report that NZ doctors were reluctant to discuss prostate examinations with their patients, or perform rectal prostate examinations.

So it's all pretty cut and dried here, male sexual development and health are not top priorities.

Hi XXYGuy,

The notification was because I just approved the post further up the thread (on page 1) with the link in it. There was a delay as I was on holiday, sorry for the confusion.

Regards,

Alan

Re your previous comment....Testosterone on it's own means nothing at all. It is the relationship between testosterone, LH, and FSH that determines a doctors course of action PLUS what the patient says.

...well I looked my record up and aside from recording my T level and numerous other measurements neither LH or FSH were recorded at that time but seem to have been added as an afterthought approx 2.5 years later as follows LH <0.1(less than)="" fsh="" 0.4="" results="" from="" 26/08/04="" and="" lh=""><0.1 fsh 0.3 results from 20/09/04 which is the first time they ever bothered to record any test results that close together and rarely did they show more than the t level in letters of communication to the gp....should i be surprised that my hospital records have been lost twice now covering the 1980-1981 period and the later 2002-2004 period..(allowing for a typo shown as tsh) my current fsh is 3.4.... fsh="" 0.3="" results="" from="" 20/09/04="" which="" is="" the="" first="" time="" they="" ever="" bothered="" to="" record="" any="" test="" results="" that="" close="" together="" and="" rarely="" did="" they="" show="" more="" than="" the="" t="" level="" in="" letters="" of="" communication="" to="" the="" gp....should="" i="" be="" surprised="" that="" my="" hospital="" records="" have="" been="" lost="" twice="" now="" covering="" the="" 1980-1981="" period="" and="" the="" later="" 2002-2004="" period..(allowing="" for="" a="" typo="" shown="" as="" tsh)="" my="" current="" fsh="" is="">