Testosterone Therapy

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I am a member of a number of KS sites both in the UK and worldwide and I have noticed that some of the overiding comments relate to:

>> I have KS but don't want TRT - WHY?

or

>> I am on TRT and I want off it - WHY?

If it's helping you stay healthy; reducing the risk of osteoperosis, heart disease, blood clots, anger issues - why would you want to come off it?

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  • Posted

    When I first started testosterone I had regular erections, spontaneous erections, some pubic hair, but no facial or body hair.  Looking really young even at 17 was a major problem.  I wanted to look more physically mature, as any other boy my age wanted.  

    I met an XXY guy on YouTube   who at 30 claims  all manner of reason why he doesn't want testosterone, and  being sexually capable is, I think, his major justification. However I believe it is the cost of therapy that puts him off the most.  I have never had to pay for my therapy directly.

    Other XXY men say they don't take testosterone because their doctor won't prescribe it.  There are all sorts of reasons as to why that is.  I've even had GP tell me he won't prescribe me testosterone after he palpated my tiny balls and seeing how physically  immature I was, as he believes testosterone makes males aggressive. 

    Reasons why XXY men taking testosterone complain they can't get off it I can't understand, as KS is not a notifiable disease, nobody is forced to take it,  and nothing on the planet can make a man go to the doctor to get a script, then force him to go to the chemist to have it filled.  So I need that reason explained to me.

    cheesygrin

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    • Posted

      I'm on 1000mg / 4ml Nebido every 12 weeks; I have a full blood test 2 weeks before that injection everytime.

      I've been on Nebido for 15 months now with no adverse side effects, only expected side effects that some people seem to think is unacceptable.

      I would much prefer the side effects associated with Nebido / Testosterone than the side effects of not taking Nebido. At 51 years old I don't particularily want osteoperosis, diabetes and all the other problems associated with KS.

      What I do want is more muscle, no excess stomach fat and a fantastic sex life. 2 out of 3 ain't bad and the 3rd is on its way.

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    • Posted

      There's a really curious thing going on, I can look around my town and see thousands of men with tummy fat, and I don't for one moment think they're all XXY.  Men, when they put on weight, put it on round their belly.  They get rid of it by exercise and diet, or diet and exercise if you prefer?  cheesygrin

      So why is it that now I read reports on how when XXY males put on weight it's round their belly, when  previously it was on their hips and thighs?   I'll actually hazard a reply myself, it's because they're on testosterone therapy and their bodies are responding like any other mans body would.  They're basically normal.  Fat around their belly  ought to be applauded as an indication their testosterone therapy is working.

      I've read many reports on what is supposedly a side effect of testosterone therapy and thought, 'But that's a positive effect, that's what I want.'  cheesygrin

      Even body builders who abuse testosterone have to exercise.  Just taking testosterone won't make you develop more muscle, you still have to work at it.

      I found it  bloody hard work to gain muscle mass, eventually I gave up.  It turned out I didn't have any where near the right amount for my body.  But we don't discover what is the right amount except by trial and error.  It'd be so much easier if all men had the exact same level, and everybody could be treated perfectly.

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    • Posted

      "I found it  bloody hard work to gain muscle mass" - why did you have trouble?

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    • Posted

      Well I thought I said, becasue I didn't have any where near the right level of testosterone for my body.  I exercised a great deal, I cycle toured and raced, bicycles.  I went to gym, played competitive Babminton, never gained an ounce of muscle mass.   My gym instructor reckoned it was because I didn't eat enough.    How do I eat more?   rolleyes

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    • Posted

      You say that you exercised a great deal (cycling, cycle racing, badminton - all sports that don't lend themselves to gaining huge amounts of muscle) and there is such a thing as too much exercise.

      Too much exercise will undo all the work you have done gaining muscle and then you'll burn that muscle by doing too much exercise.

      Pre-KS diagnosis - I too used to exercise 6 days a week - sometimes twice a day trying to lose the stomach fat and gain lean muscle - obviously this did not work.

      Post-KS diagnosis - researching KS big time resulted in finding out what exercise, diet and supplementation suits a KS Male (most gym instructors are used to dealing with the average joe - not a KS male - in fact they will not of heard of KS and will know nothing about the effects of TRT on a KS male and how exercise affects us).

      So after 12 months of Nebido - I started off back in the gym.

      The basics:

      Cardio can be kept down to the minimum - around 10-15 minutes per day and that can include walking to the gym.

      Training is weight training - machines, free weights, high weights.

      Training is 3 days per week - no more - you need a days rest in between.

      Diet - pref 5 to 6 times a day eating (little & often) - high, lean protein; non-dairy protein shakes pref.

      Supplementation - omega 3,6,9 - vitamin D3, multivit, Vitamin C, Zinc, Collagen.

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    • Posted

      You haven't seen many cyclists close up. Successful cyclists need

      upper body strength, as well as powerful leg muscles.

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    • Posted

      And gym involved lots of weight training, following instructions from my  trainer, that included optimum dietry needs.  What I did was in accordance with accepted standards.  These days I barely exercie at all, which I suppose I could do something about, if I could be bothered?

      You'll just have to take my word for it, I didn't put on muscle as I didn't have enough testosterone, and when I did have enough testosterone I did put on weight.   But like everything else, there's an optimum time for    doing it, and when I was passed that time the same gains weren't going to be seen.

      And unless I lived in a  deprived society, at which point I won't be able to afford dietry suppliments, but anyway, if I did have plenty of money to buy dietry suppliments, they'd be a waste of money as a balanced diet will meet all my needs.  A little meat, green vegetables, root vegetables, and cererals, and I should survive quite nicely.

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    • Posted

      I used to work with quite a number of MTB racing teams around the UK and across the world. Yes, I agree that full body strength is required but certain exercises and over training damage the body as opposed to helping the body.
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    • Posted

      Also these events weren't concentrated over a very short period of time, I'm talking about years of time.  Being a skinny runt was my lot from soon after the start of puberty, and my PE teacher in highschool thought weight training was the best option, but I soon gave up on that, as there was no benefit.  I was just nmaking myself tired for nothing.  That was years before I was diagnosed.

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    • Posted

      I am surprised by this discussion on weight training. I had gained alot of muscle with free weight and some gym equipment for several years.

      Most men use heavy weights thinking they will gain weight fast.

      My choice was using lighter weights or barbells. First I started with 5 pounds, second set to 10 pounds and then third set 20 pounds. Three days later I would reverse the sets, I start with 20 pounds, then 10, then5. However, when you bring the bars up to your chest you squeeze your bicep, for 10 seconds before you gradually move your hand down to you side. Every machine you use in the gym you must always hold or squeeze the area for at least 10 to 20 seconds if you want to build muscles. I had very muscular legs by tensing my leg muscles on some of the machines.

      Most men at the gym I went to, tried to rush every exercise and that sometimes works but for me a slower pace worked better. I have been on 200 mg of testosterone cypionate.during the time I trained at a gym. Now that I don't go to the gym mainly because I am an amputee, I have been unable to find a gym that can accommodate me because I don't wear the type of shoes that are required for a particular gym.

      I still retain bicep muscles and have been working on strengthening my leg muscles. The only thing I miss is strong shoulder muscles which are not as strong as I would like but I don't have access to barbells or the equipment to strengthen those muscles.

      Anyone can obtain muscles if you have the right equipment and the correct instructions. As a xxy male you cannot exercise like a normal male at the gym. You have to adjust the equipment and the exercises differently. You almost have to re-do the instructions to fit your body type. But you cannot achieve it overnight. It will take longer than normal to build any muscle. But most give it up because they expect muscles pretty quickly. I never bought into taking body building supplements, I only relied on eating more protein like chicken breasts, etc.

      The only side effects that I experienced with testosterone was body hair on my groin, face, chest and back. But I cannot grow any. hair directly underneath my nose. I grew less hair on my legs. Acne only occurred when I first started on testosterone back in 1982.Otherwise I had no major medical problems with testosterone. Not even mood swings. No increase in weight.

      Testosterone affects every xxy male differently. One man told me he only had facial hair, a beard,, but no where else.

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    • Posted

      You note not everybody is the same, testosterone doesn't affect every man the same, you say XXY man, I say every man.  I can look around the gym and see men of the same age all looking different.  I can do the same everywhere I go.  There are men everywhere and they're all different.

      So; what's so surprsing? 

      The medical profession determines that if we're XXY and androgen deficient that we all need the same level of testosterone to begin with. The only time that actually changes is if we say something, either we like or dislike the regime.  If you were like me and every time I went to the doctor and said I felt fine, regardless if I did or not,  then my doctor never got told the truth.   I was thinking he'd tell me if I was looking as I should, not that his questions were the mechanism he used to determine if I had the right level of testosterone.

      So I'd go cycle training with other people my age and younger, and I'd see their bodies change, but mine didn't.   So there's a clue, their bodies changed in response to their physical activity. They weren't all the same though, they just became more obviously mature.

      I didn't want to be a body builder.  I wanted to race cycles and win.  I did the racing part, not the winning part.   But then only one person can win. There were plenty of others who never won too, and I'm pretty sure they weren't all XXY's, but they did fill out, get more muscular, look more mature, more manly.

      Now when it came to hair growth, I'm pretty sure anybody, male or female, can take very large doses of tetosterone and grow a full beard. The simple fact is to grow hair you don't need to exercise. Just the right amount of testosterone at the right time will do.  And if that time is missed, just upping the amount of testosterone will do.  

      I missed the optimum time for growing facial hair, so had my testosterone level upped massively.   And it wasn't me who noticed I didn't have a typical mans amount of hair, it was my ex.  She looked at me and said words to the effect of 'Teenage boys have more body hair than you"  and she was right.

      Now my ex was a bit heavy, and we wanted a family, and for her to get pregnant she needed to lose weight.  So we were at the gym together, for different reasons, she wanted to lose weight and I wanted to gain weight.  Well she lost weight.  I never gained any whilst overdosing testosterone.  Building muscle takes more than just taking testosterone, eating more, and doing weight training.  There's something else required as well, maybe the right time?

       

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    • Posted

      I forgot to mention that I could never got massive muscles, because I needed constant testosterone. Being xxy, I could see definition on my body, but never achieved a six pack. Like you said, every man is different and they come in all sizes. It depends on their testosterone levels. I knew one normal xy male who got illegal testosterone. I never saw him achieve bigger muscles. But using needles that were not sterile he developed the skin decaying disease, he even had surgery to remove that area on his bicep.

      He said he felt stronger and got a high, I assume that was a a harder cock.

      I have seen pictures of him today and he has grown a belly, like most men his age.All of his experiences in the gym, did not pay off in the long term of aging.

      Diet and a good testosterone increases body mass. plus exercise.

      But since my testosterone wanes after 3 weeks, I could never get the massive muscles like everone at the gym I went to.

      I get testosterone injections because they are the cheapest. Gels are expensive and my medical insurance won't pay for it.

      But I don't think it would have made any difference. I was on the patches early on but even with those didn't help.

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    • Posted

      This much easier to do on my desktop- at home. 😁 I think, that is it may be

      This way, that which parent provides the exta x and what concentration it appears

      In cells it is in, might determine how well each XXY responds to T?

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    • Posted

      Does starting testosterone treatment help for a 38-year-old male? My boyfriend has primary hypogonadism, but it isn't XXY or Y-chromosome microdeletions. His endo is starting him on TRT right after we do a round of IVF. What kind of physical and emotional changes can he expect, considering his age? I read that starting TRT is most helpful during adolescence. 

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    • Posted

      I think he'll physically mature, if he exercises he'll develop more musculature, he'll grow more facial and body hair, he'll be more sexually keen, (he might want sex more), his penis might get bigger.  He might grow more pubic hair.   He might smell more, need to wash more often.  

      It all depends on how his body responds to testosterone. 

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    • Posted

      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.

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    • Posted

      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. 

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