Ive been referred to see an endocrinologist in December for XXY syndrome

Posted , 8 users are following.

I had a blood test checking my hormone levels from my GP and all I can remember is her saying my testosterone levels weren't low but weren't high. And nothing was too dramatic from the test results but she still wanted to refer me for Klinefelter syndrome to a specialist because I am 22 and have hips and am 6ft2. And the fact I have little facial hair and no chest hair and that I look alot younger than my age. The waiting is so frustrating and I am really confused as, she said my testosterone levels werent low, so what does this mean?

1 like, 24 replies

Report / Delete

24 Replies

Next
  • Posted

    The only way to know is to make the chromosomal analysis blood test. My tostestirone level was not low, but still I had Klinefelter syndrome.so go make the chromosomal analysis before.
    Report / Delete Reply
  • Posted

    Fascinating, I have an appointment in December too, it's my annual with my Endocrinologist, been at this lark for years.  

    "Low normal" I've read, is a common way in whch males with KS hormone levels are described, so with that low normal T, and your other features, it looks to me like you have an excellent doctor.

    My doctor was much more open when I saw him for the first time, he said "We (him and the doctor I saw at Ford Motor Company job interview medical), think you have Klinefelters' syndrome, we think you have another X chromosome."   Or was it "extra X chromosome?"  Oh well whatever it was, it was like one of those two comments.

    Probbaly in an effort to stop patients from worrying, doctors don't like to give too much away to start with, after all, they might be wrong?  How would you feel if it turns out you don't have KS, but some other syndrome?   I canm thoink of another one with similar attributes, that also has the same acronym, KS. What if it's that?  

    It's great to see some doctors really are looking out for their patients, excellent results so far, in that regard.cheesygrin

    Report / Delete Reply
    • Posted

      Yeah she did mention low normal...

      She did say KS but then said it might not be. Why what else could it be??

      The wait is the worst thing, I need closure either way but I know I probably wont have answers for some time after my initial appointment, I dont know what to expect.

      So did you have a general medical examination and thats how it came about? I generally went to the doctors about something totally different

      Report / Delete Reply
    • Posted

      Funny you should say that XXYGuy because sometimes it can be typically underdiagnosed because its symptoms often mirror other diagnoses." Adding to the fact there are many combinations of Ks (as this article explains if you care to read through it all LOL, http://www.ukessays.com/essays/psychology/analysis-of-klinefelters-syndrome-psychology-essay.php )

      Hears a very good example of a Misdiagnoses of Ks http://www2.ljworld.com/news/2014/jul/01/after-years-misdiagnoses-lawrence-teen-found-have-/

      When I was diagnosed with Ks I was also diagnosed with server Osteoporoses I had to give up working on in the building trade and I had to give up riding my motorbike only to find out ten years later after seeing an Osteoporoses nurse that I didn’t have Osteoporoses fact i had Osteopenia and Osteoarthritis and that I shouldn’t have been taking Fosamax as this could do me more harm than good, so you see some Doctors do get it wrong! So these days I fully check out any drugs before taking them, I look up all the possible i.e. if you’re going to be taking any drug for long periods its best to know what the long term affect are i.e. like Testosterome, this article really dose put it in perspective

      “Is testosterone therapy safe? Take a breath before you take the plunge”

      http://www.health.harvard.edu/newsletters/Harvard_Mens_Health_Watch/2014/February/is-testosterone-therapy-safe-take-a-breath-before-you-take-the-plunge

      Report / Delete Reply
    • Posted

      virgojake… One I sympathize with your Delmar the Doctor in question really shouldn’t have said it might or mightn’t be Ks its like telling someone you might or mightn’t die if you jump off a cliff ha, ha, ha they should have waited until all your tests had been dun being this wouldn’t have put undue stress and anxiety on you,

       

      The reason I went to my GP was because I was having excruciating pain in my testicals over the point of 6 months the pain became unbearable to the point I found it very hard to walk any dissents without having to stop due to pain after all the tests had been dun it appeared my right testical had stopped working and the left one was barely working sins starting Testosterome replacement Therapy over 15 years ago my testicals have shrunk to the size of peanuts LOL   

      Report / Delete Reply
    • Posted

      I'm a mere participant, I don't do moderation, I am not the Moderator.  I have no idea why your messages are being held up, and If it were down to me there'd be no hold up, however it's not down to me.

      sad 

      Report / Delete Reply
    • Posted

      I didn't know I was to have an examination, it was foisted on me at a job interview, at Ford Motors, Seaview, Lower Hutt, New Zealand, been there?  cheesygrin

      It was a terrible thing to, but what turned out to be the first of many examinations of my genitals, by many different doctors.  I'd suddenly become highly sought after as a commodity.   Apparently, I learned much later, XXY guys are supposed to have very small genitals, but I  only had very small testicles! It's all written down in my medical record, would my doctor lie to me?  rolleyes

      So what else could it be, well it could be Kallmann syndrome, that's a similar form of hypogonadism (Klinefelters' syndrome is a form of hypogonadism).  It could simply be low normal testosterone for no apparent reason?  But then three are yourt other features that temnd towards Klinefelters' and away from Kallmann.    

      Report / Delete Reply
    • Posted

      Yeah, I guess but I kinda knew before, I had researched it so I was already familiar with KS. However she did she to me that it could be something else even rarer and she said the name and I forgot it as soon as I left the room which frustrated me because I wanted to google it and find out about it!

      Oh wow, thats crazy! But you still carry on with it?

      Report / Delete Reply
    • Posted

      Nope I havent! How long did you live there for? Did you never feel like there was something different about you, and  down there before you got diagnosed? Isnt that rare to only have small testicles? So what does that mean, average size everything else ha? My GP asked me if i had testicles! I said oh god yeah.

      Oh okay, I keep thinking it could be just the way I am because thats what ive allways thought since I was 17, this is just the way I am.

      Report / Delete Reply
    • Posted

      Did i say you where? but it dose apear who ever is the moderator they dote seem to like some of my replys to witch i find a bit odd because i'm not being abusive et, et, I comment on many XXY forums and discustion groups and have never had a reply or comment disalowed or deleted yes i right as i speak it thats how i am some may find that diserbing but hay if i cant be myself theres no point being hear! 
      Report / Delete Reply
    • Posted

      Did i say you where? but it dose apear who ever is the moderator they dote seem to like some of my replys to witch i find a bit odd because i'm not being abusive et, et, I comment on many XXY forums and discustion groups and have never had a reply or comment disalowed or deleted yes i right as i speak it thats how i am some may find that diserbing but hay if i cant be myself theres no point being hear! 
      Report / Delete Reply
    • Posted

      I was born in New Zealand!  I'm still in New Zealand. Oh for sure I was different to everybody else, life was not a bed of roses!   I was constantly in trouble at school, ya get that when you're smart but never seem to learn anything!  I didn't get on with my peers, still don't.  I was misdiagnosed with Epilepsy and took mediation that made me incredibly moody, and changed nothing!  I was constantly in trouble for oine thing or another.  I ended up preffering my own company, others just being a pain in the arse!   I had less friends than can be counted on one hand!

      Occasionally I struck up a 'working relationship' with other boys, but they tended to be fleeting until after the onset of puberty.

      In 1971 we went to live in London, buit nothing substancially changed, I just managed to pick up a friend for 3 or so years, until we returned to NZ, to resume the loneliness.

      It wasn't until 1994 that I realised ALL my difficulties are directly related to being XXY, and not being diagnosed properly, or treated properly. Som only having small testicles being unusual, hell I don't know, most XXY's are never diagnosed at all, how are we to know what is unusual and what is not?

      Report / Delete Reply
    • Posted

      Testosterone, it's safe for males to have testosterone, especially this male.  I won't stop taking testosterone ever,  I need it for my well being, for sex, I like having a sex life. Sure some men do develop diseases where one result is no sex life as their testes are removed for therapy, and if that shoud ever happen to me, well I'll deal with it then, but I'm not giving up sex just because some men get diseases of their sexual apparatus.  Men over 50 should have regular prostate examinations, and testosterone is said to aggravate prostate cancer, but until it happens, I'm staying with my lifetime treatment.

      Oh and ALL testosterone products do exactly the same thing, so changing method of delivery will make no difference at all.  

      Report / Delete Reply
    • Posted

      You asked me why your message was stopped and I have no idea, you may as well ask the breeze as ask me!  biggrin So you MUST have assumed I knew why, or you'd not have asked me.  

      Now then can we speculate, or should we just let it go?  

      Last night I discovered my posts on a Facebook group were being held up for approval, so I left that group, hell I didn't even sign myself into it, so it's no loss to leave it.  Nobody is going to censor my posts.  

      So if you had the same attitude as me you'd not be here, I can't even be bothered asking why I've been censored, I just go.  I need crap like a lesbian needs a man!  lol  

      Report / Delete Reply
    • Posted

      "Adding to the fact there are many combinations of Ks"

      The article is wrong, I don't even need to read it to know it's wrong.  KS is the symptoms of the disease Seminiferous Tubule Dysgenesis, end of story.  Now which symptoms each individual has will vary, but whatever symptoms are present does not stop the disease they're related to being exactly the same.  So there is only 1 form of Klinefelters' Syndrome and many forms of hypogonadtropic hypogonadism, and hypergonadtropic hypogonadism.  Hypo means UNDER and Hyper means OVER.

      KS is a form of hypogonadtropic hypogonadism.  The gonatropins are LH and FSH, and they are over produced in males with Klinefelters' Syndrome.  

      LH (a hormone) tells the testes to make testosterone, but the testes can't respond and more and more LH is produced as a result. FSH (a hormone) tells the testes to make spermatozoa, and the testes can't respond and more and more FSH is produced as a result.

      The reason the testes can't respond to LH and FSH is because they are atrophied (shrunken) by the disease Seminiferous Tubule Dysgenesis. KS was referred to as STD for at least 10 years before it was ever referred to as KS.  It's just that KS is much easier to say than Seminiferous Tubule Dysgenesis.  

      Have you ever asked yourself how men with STD were actually disagnosed before the advent of genetic testing?  It was done by biopsy of the testes, where the disease STD was searched for, not by outward expression of the symptoms, as they can be by many different pathways, like Kallmann Syndrome, which is Hypergonadtropic Hypogonadism. cheesygrin

      Report / Delete Reply
    • Posted

      In most cases Testosterone is safe for most males but not all xxy’s get along with them and I have to differ with you on the point that all Testosterone products are exactly the same and do exactly the same as some Testosterone products very in strength and consistency and there has been some controversial papers published about the risks on pacific Testosterone products like with all drugs some work better than others but if your happy taking them that’s good for you just dote do what some others have dun and overdose on Testosterone for what ever reasons you have for taking it, personally my sex drive was low before T and yes when I started taking it the thoughts where fully on sexual appetite and the mind was fully functioning but it also had very bad advise side affects witch made me feel at odds with myself and sins stopping thankfully I’m feeling better within myself but in time I will start taking Estragon because without any HRT I am putting my health at risk of osteoporoses as I already have osteopenia and osteoarthritis, but its everyone to there own I have no problem with that.                 
      Report / Delete Reply
    • Posted

      So we take a genetic problem that prevents the testes in time from producing sufficient testosterone,  in time the symptoms worsen due to that lack of testosterone.  How does replacingthat lost, or not made, testosteorne directly cause any problems?  

      To date there has been no recorded incidence of testosterone overdose.  There are plenty of anecdotal ideas out there, all based on a misunderstanding of testosterone function.  All deliberately overdosing testosterone will do is promote more sexual activity and promote more physical development, like hair growth. If you want more muscles you'll have to exercise too, just taking more testosterone won't do it, it is a myth to believe otherwise.

      Taking an overdose of testosterone will also cause increased levels of oestrogen, as testosterone and oestrogen are  chemically very similar, and testosterone readily converts to oestrogen in the testes and the fatty tissues of males.  I have had a very high level of oestrogen for many years because I have a very high testosterone regime.

      I am emotive because I am XXY, and I have learning difficulties as a result. I always have had learning difficulties, and I didn't learn gender stereotypes.  My level of testosterone or oestrogen has nothing to do with my ability to learn.  However I do notice an improvement in my learning ability once I started senior primary school, whch I believe is due to better teaching methods, which coincided with puberty.

      Report / Delete Reply
    • Posted

      I have long arms, longer than my height when combined i think. Is this a sign? im just desperate to have a clearer idea if i have it or not, its the not knowing thats the worst thing for me, the unknown.
      Report / Delete Reply
    • Posted

      That is one of the tests I had way back in 1976, that I thought was weird.  I had to stand with my arms outstretched, naked, so the doctor could check my height/span ratio.  He never did say what it was, and it can't be all that important.  Although, with tiny testes, acne, some pubic hair, no body and sparse facial hair, looking back I had all the right signals to do blood tests for the gonadtropins, and when they came back elevated, with low normal testosterone, I was a dead ringer.  

      There's a new forum started called TSU - I guess it's Chinese?  Anyway you can read some of my medical notes posted there, where you will see how I appeared, no pictures, you have to read the description. And yes way back then I really did give myself a sperm count!  cheesygrin

      Oh and I think you might have to sign up to see the page?

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up