I started Nebido at the age of 49 having been diagnosed with KS. I too have primary hypogonadism. I assume that your boyfriend has had a genetic test?
Yes, TRT is very useful if started during puberty but it does have extremely helpful effects taken at age 38 or age 49 - in that it can reverse or delay some of the more devastating effects of KS such as early onset osteoporosis; diabetes; heart based problems.
Thanks very much. Yeah, he's had genetic tests and the doctors can't explain his hypogonadism. They are ruling it down to unexplained environmental cause before or during the onset of puberty.
I take 200mg of testosterone cypionate.during every 3 weeks by injections into my hip. It is paid through my medical insurance because all pre-exiting conditions were covered back in 1979 through my US government work.
The only side effects that I had from the testosterone was acne, body hair plus my chest and back hair and a full beard (a partial moustache--it doesn't grow under my nose) and groin area. Limited leg hair. Erections. Hair in my arse.
. Through weight training I was able to increase back and leg muscles and some upper arm muscle. But due to my fat belly, nothing
I take it because my hormone level is 34 without the injections. I forgot one injection recently for one month, and that's what my testosterone level was. I don't want to get osteopenia or osteoporosis.
If you don't want hormone therapy, then you are supposed to take calcium and vitamin D in megadoses. But it must be under a doctor's care. I read that information on a study on the interest, where I don't remember.
Since I am hemodialysis (US spelling) or haemodialysis (UK spelling) now and because of 2 genetic kidney disorders, I am the only person in my family that has 2 genetic kidney disorders, dialysis lowers my testosterone levels, so I now have ED.
I have never had mood swings or breast tissue.
Due to my kidney problems, I always had high blood pressure. I currently weigh 144 pounds or about 65 kilos. give
or take 1 to 2 kilos water weight.
I still have a belly but I can fir t into trousers where the waist size is 31 but it is a tight mainly because I gained about 5 pounds recently, but normal I wear size 32 waist trousers. If I wear any upper waist sizes I have to wear a belt, otherwise my pants fall down.
Through weight training I discovered how to work out. Meals didn't help, but using macines and free weights were my tools in getting toned in those areas where I developed some muscles. But since I don't get a huge amount of testosterone, I never got huge muscles. I got what is called definition, noticeable.in my arms and legs. You go slowly then tense your muscle area, hold for a few seconds and then resume the exercise. That applies to your back or leg muscles or your shoulders and upper arms. Since I never looked at my glutes, I don't know if they grew. or got toned
I should be getting testosterone every 2 weeks but since I live in a high altitude area, my hematocrit rises over 50, so that is the reason I only get injections every 3 weeks. Hematocrit increases can cause my blood to thicken. and can cause heart problems per the Endocrine Society for high altitude areas like Colorado which is around 5280 above sea level.
At lower levels, hematocrit levels do not increase.
But as I have indicated on this forum, I also have had over 20 or more medical problems and have listed them on this forum. If you actually seen my medical record, you would be quite surprised and that is not all if them
When I had feet, I had flat feet. I now have a partial foot and a prosthetic leg. I have diabetes type 2 and through dialysis I lost circulation , got gangrene in my feet and my toes were removed on my right foot and on my left leg, it was amputated below my knee.
My quality of life is good. Although I must spend 3 days a week on dialysis, to remove excess water from my body, I am alive because of it.
I am unable to get a transplant because of my poor blood circulation problems. But I an not sad or mad. My life is so much better, but the only drawbacks is that I cannot walk alot with my prosthetic leg. My stump gets sore if I walk long distance. I don't drive a car. Never learned how, never been on a ship, or boat,never flew in a airplane. I don't like to travel, I have always lived in Denver, Colorado and I will finally go to the xxy convention in Denver on June 23 to 25, 2017. I will be taking my medical record so that other xxy's can see it, if they want too. I will be using my walker only because my right knee may collapse, but otherwise I can walk without it.
As I indicated, many xxy's may not have all of the medical problems that I have, so I called myself Unique. If other xxy's want to criticize me that is their right, but I could care less what they thought of me.
I sometimes get depressed because of credit card debt, but.I never got depressed due to my 47 chromosomes.
God gave them to me and I must respect that gift.
At age 65, I am a happy person at the stage in my life.
Good luck to other xxy's who may not appreciate their gift from God or any spiritual entity.
A correction about the xxy convention it is not in Denver, it is in Aurora Colorado June 23 to 25, it is where xxy, xyy, xxyy ( men and boys) and xxx (girls) will.meet and have seminars on all topics dealing with these medical disorders.
Since I don't travel out of state, I get very disoriented when I travel, I did travel out of Colorado by myself once, but never again. I almost got on the wrong long distance bus from D.C. to Colorado. That experience was not one I would repeat.
Years ago, I took swimming lessons, and found out I couldn't swim because my arms and legs were not coordinated, I couldn't breathe and move my arms and legs in a swimming motion at the same time. The only thing I was able to do is float. I almost drowned jumping off the diving board.
Did anyone (xxy)have this same problem or defect. I never did learne to swim correctly, so I consider my effort as a defect.
I assume all xxy's are better at sports than I was because I have never enjoyed any sport activity since I was a small child.
Hi xxyguy. 28 years old I just wanna ask I've been diagnosed with Ks and I'm thinking about TRT. Wanna ask you if you don't mind that how old are you and when did you start TRT and how are you functioning with TRT I've asked my doctor all this already but I'll rather hear it from someone with the syndrome. And what other health problems do you have now and has TRT contributed any of them. Sorry to sound like I'm interrogating you just been really overwhelmed with all this.
Hello Spud!!
I'm closer to 60 than 50. I started testosterone therapy in October 1977 when I was 18 years, 3 months, 2 days old.
I don't believe I have any health issues caused by testosterone therapy. I believe I have health issues associated with being male. Many males my age have prostate problems, and I do too. Many have erectile issues, and I do too. I was once taken to task by my advocacy of testosterone for teens as testosterone is associated with aggrovating prostate cancer, and my response to that is "how many teenage boys have prostate cancer?" I don't advocate forcing XXY's into leading an unnatural life simply because they MIGHT develop diseases in the future.
Some XXY's claim they didn't experience puberty, that would be unnatural from my way of thinking. I don't actually believe those men, I think they're confused. XXY's can't develop KS unless they've started puberty.
I'm treated to prevent the symptoms of seminiferous tubule dysgenesis from showing, those symptoms are what you'd call KS. So I have no symptoms, if I was forced to live with symptoms we'd not be having this conversation as I'd be dead. I'd have killed myself years ago. So whatever your doctor says, testosterone saved my life.
I'd ask him/her if s/he had anything negative to say about testosterone, "How would you like to live permanently with the symptoms of disease, and without sufficient sex hormone appropriate to your sex?"
Thanks so much for your fast reply.
My doctor hasn't said anything negative towards trt I just have been reading about the symptoms of trt and like I just wanna know I'm abit new to all this Im worried about not living a normal life in my older years when I grow old hopefully. and the diseases that come with ks has really scared the sh*t out of me it's really thrown my whole life upside down. And I've been reading about the life expectancy and its reduced by 5 years and I'm just confused weather to use or don't use trt if using trt is gonna increase the diseases or not using trt is gonna increase the diseases sorry for rambling about this but I just feel the doctors don't understand my concerns.
Maybe you mean 'side effects?' I don't regard any side effects of testosterone as negative. If you're typical you'll look much younger than you are, testosterone at the right level will change that.
When I was first disgnosed there was a lot of negativity from the medical profession about testosterone therapy. There was also very little informaton for patients. Where I am every snippet of information had to be censoored before I was allowed to read it, the argument being that I'd imagine my 'condition' to be far worse than it really was. I argue that's a problem I'll just have to deal with, if it happens. XXY's do worry, they do misunderstand things, but then so do XY's and XX's.
Now that the internet exists the freeflow of information can't be stopped. In the future the types of diseases affecting XXY's may well change, as previously the patients did not have therapy and all sorts of diseases that may well be associated with long term low testosterone may have been the cause?
When I was first diagnosed (yawn) there was no association made between XXY/KS and psychological, psychiatric, educational issues, everything was about hypogonadism and additional chromosomes causing mental retardation, and retardation was not regarded as an education issue, but something that makes those with them sub human etc. Now the medical profession knows more, but they're still somewhat slow to change. We each deal with our own doctors who don't all have the same knowledge. What they learned when they first trained is all they know, and as they're not interested in genetics generally, they don't update their information. In time you will probably gain more information that your doctors, you will become their teacher. What you need to do, IMO, is not take all you read as being about you personally. It's just interesting information about the person or people you're reading about, some of which you might relate to?
Thanks for the information xxyguy.
Having ks will it alter my life in a big way from your experience I know everyone is different. Will I live a normal life. Like for example you what's the biggest health problems you've got from having ks.
Also am I more as risk if I don't have the trt.
Sorry mate I just really feel depressed at the moment don't know what's happened.
Well Spud, I don't know. Who was born with a crystal ball? Did your parents know they had a different child? Were you educationally affected? Did your mother throw you down a set of stairs when you were 4? Were you misdiagnosed with epilepsy when you were 4.5? Were you given meds that made you really grumpy for 8 years? Were you repeatedly beaten up by your parents, them believing beating up children was proper child care? Who can say what events influence your life, and how you respond to them, and what other influences impact on you?
According to my doctor, when I got to 40 all lifes problems were to have ironed themselves out, and everything would be sweet, and nice, and lovely. That wasn't my experience, but maybe it will be for you?
Maybe the 9 men Dr Klinefelter studied the notes of didn't have any difficulties other than hypogonadism? Maybe pigs really do fly?
My example is not a good example to rate your life by. Only you can live your life.
I know if I didn't have testosterone I'd have been permanently impotent from around 20ish. I'd have no sex life at all. It's sex that causes a man to leave him mommy & daddy and strike out on his own, and establish himself as a separate entity. Do you want to live with care givers and/or
parents forever? So what if testosterone has (after a lifetime) less favourable effects on SOME males, what do you want, independence or servitude?
Well I know my choice.
You asked "can I live a normal life" - this is quite an ambiguous statement.
You have lived with KS since birth - everything that has happened to you good or bad that seems out of the norm in relation to everybody else is probably related to KS.
Typically you cannot have children natuarally and you have to live with that. All the other symptoms, diseases, etc., are part of KS and some can be reversed, others controlled.
I was diagnosed at 49, I was on Nebidio within 6 months - best thing I ever did - it has changed everything.
Can you live a normal life? Yes you can - as long as you take care of yourself; as long as you research everything and keep on top of your condition; as long as you push your GP and Endo's to give the best treatment to you.
Like a moving flute to a King Cobra, since bulls are colour blind and snakes have no ears/are deaf. Notice how I prefer accuracy?
"You asked "can I live a normal life" - this is quite an ambiguous statement."
I definitely read "can I lead a normal life" as a question, nothing ambiguous at all.
"You have lived with KS since birth"
Has he, has anyone, my tagline on all my emails and page image on one of my YouTube accounts "Nobody was ever born with Klinefelters syndrome." Then of course there is Dr Arthur Robinson from Denver who said "I never refer to newborn babies as having Klinefelters, because they don't have a syndrome" page 5 Understanding Klinefelters syndrome, a guide for XXY males and their families. (write to me privately and I'll send you the web address) Also if XXY (and other) males were born with KS they'd be diagnosed at birth, but they're often never diagnoosed at all. "Long term outcome in children of sex chromosome abnormalities" by Dr Shirley Ratcliffe.
"everything that has happened to you good or bad that seems out of the norm in relation to everybody else is probably related to KS."
I doubt that, since Ks can only have become manifest after the onset of puberty. Good things that happen, how can good things be related to hypogonadism? KS is a form of hypogonadism. Actually KS is the symptoms of disease to be exactly correct. What other symptoms of disease produce 'good things?'
"I was diagnosed at 49, I was on Nebidio within 6 months - best thing I ever did - it has changed everything."
I know what testosterone does change, and I'm pretty sure "everything" encompasses a great deal more than the things testosterone is directly responsible for, so what do you call 'everything?'
I'm sure given the right interventions everybody CAN live a normal life, but to say any particular individual can live a normal life might be a bit presumptuous? We just don't have enough information - well I don't.
xxyguy thinks he is an expert on everythinhg, so beware regarding his comments. He has criticized me for my commenT's on xxy. I believe xxy is genetic, he has an opposite view that his opinion, not the medical field.
Anyway, if you are cosidering ne hormone replacement therapy, it is your choice. Not every xxy gets HRT. with testosterone. Some get female hormones.
The only side effect I got was more acne, and more body hair on my chest, back, arse and face. But I can't grow any hair directly under my nose. I have limited hair on my legs. Or I should say on my half leg. Due to my diabetes and loss of circulation due to my 2 kidney disorders, I developed gangrene and eventually lost part of my left leg due to an infection and all my toes on my right leg. Both dialysis and the amputations were in 2014.
I was diagnosed with xxy in 1982 at age 29 and that's when I started on injections. I am now 65.
As I indicated on this forum, I habe over 20 different disorders. Are they caused by xxy. I have no idea.
Some studies indicate that having xxy, you may have diabetes, have a high pitched voice, have very small little fingers, have tooth enamel problems, be a daydreamer. and very small testicles or penis and various other problems. But not every xxy have these problems. I dont have enamel problems, but I have everything else.
I've never said XXY is not genetic, you must be confused. What precisely is the oposite of genetic?
In order to have KS the male person must have small firm testes, a female person with XXY chromosomes does not have KS. Females can be XXY, you (not me as I already know) can find examples of XXY females in medical literate on he internet, all you have to do is search the topic. If you do search the topic and do read what you find, you will metion you found the informtion rather than keep it to yourself, won't you? I know I would, oh look I already did!
John somebody says "xxyguy thinks he is an expert on everythinhg," but what he really ought o have said was "XXYGuy thinks he is an expert on everything"
Of course I don't recall sharing my thoughts on everything with John, nor proclaiming I am an expert on everything, but I do have a poor short term memory, I may well have asserted I am an expert on everything and forgotten I said it, maybe John can quote me?
I believe I say "I don't know" from time to time, that is probably because I really don't know, or it could be that I'm an expert on not knowing something, and not too proud to admit it?
Oh and I have (don't tell John this) argued that some XXY guys may well do OK with Oestrogen therapy as Oestrogen stop linear growth, that is prevents excessive tallness, so if a parent knows their child is likely to be excessively tall, that paarent might want to give him sufficient Oestrogen (or testosterone) to initate epiphyseal closure early? This has nothing to do with feelings of sexual identity, as both males and females have the same sex horomes, just at different levels, at different times.
If you didn't want this fascinating information, just ignore it, no-one is compelled to learn anything, ask John, he's an expert on ignorance.
I forgot to mention thing, if you have 47 chromosomes then you have KS.otherwise you would have the normal 46 chromosomes. It is a genetic marker. No matter what anyone says on this forum. You were born with KS or xxy.period.
If you don't want testosterone, then beware that you may be prone to osteopenia or osteoporosis. Your doctor can advise what you must get(medications/ vitamins or ?) in order to sustain good bone growth.
Good luck in getting correct advise on xxy.
Everyone has their opinion and I have mine and nothing can persuade me to change my mind on KS. I was born this way and it is God's gift to me and I gladly accept this wonderful gift.
I'll be sure to pass your comment to the 47XXX and 47XYY people I know, they will be impressed I'm sure!
The idea of gaining more information is to benefit people, if you don't want to benefit that's just fine.
" Everyone has their opinion and I have mine and nothing can persuade me to change my mind on KS."
True, but he didn't write to you, maybe because you don't post very often? You can choose to be as ignorant as you like, for as long as you like.
"Your doctor can advise what you must get(medications/ vitamins or ?) in order to sustain good bone growth."
Umm, bones don't continue to grow, they stop growing actually. It is oestrogen that stops bone growth. Males get their oestrogen from their testes - but I'll stop there, don't want to challenge your mindset.
A happy man/woman has good health.