What Living With Klinefelter Syndrome Is Really Like

[@breadispain]

I'm adopted and it was a blessing for me so when you decide to have kids just know you'll make a difference in a child's life and you seem like you'd make a good parent

[@LivingwithXXY]

Ahh man I love hearing this. Thank you

[@Diamondeyeadventures]

I found out when I was 37 after I was diagnosed with Testicular Cancer. I ended up having to have a bilateral orchiectomy. But understanding how I am and the way I think came from your videos. Live 37 years without knowing but had all signs of it.

[@kstevelr]

Dang it, wish I had a therapist tell me! lol I had a crappy doctor examining me with my dad in the room. The doctor was pretty blunt showing my dad my size and really making me feel inadequate. I felt like a Circus Freak on display because they would have the medical students come in and view me. Took me many years of therapy as an adult to overcome my abnormal self image. I started on injections as well and tried all the other forms but went back to the injections for best results for me also. Any parents out there? Always treat your Klinefelter's kids with respect and never make them feel like a freak!

[@LivingwithXXY]

Ah sorry that sounds like a nightmare. But look at yourself as a pioneer for learning about Xxy. If it wasn't for you standing there maybe others wouldn't have been diagnosed. But still that sounds not fun at all. Hope you are doing better now that you are older. Thank you for the support. I really appreciate it.

[@innergoof19]

Living with XXY so happy I found this channel!

[@nondescript4311]

I'm sorry that happened. Most of the medical facilities that also teach have this issue. I wish they started asking for patient consent in written form with clear explanation so that people who do not wish to go through this are respectfully left alone.

[@88WhiteRhino]

I am real glad you found out young and discovered something that works for you. I just stumbled on it today and though I won't conclusively know till testing occurs I fit about 85-90% of the symptoms and have received no help from Dr's or anyone really despite tremors and other. Keep up brother!

[@innergoof19]

I was diagnosed today, and I'm 36. Have ADHD, diagnosed in high school. They're starting me on the gel. My concern now is fertility and my lack of energy is what made me get bloodwork. Thank you for your channel! I'll be tuning in!

[@JR2012now]

how are you today?

[@Y2Kr4SHM4N]

How are you these days?

[@atomicman9527]

Ayo man

[@silvanaguerrero8663]

Hey Ryan! Thanks for doing these videos.

[@LivingwithXXY]

Of course, Thank you for the support.

[@michigangiant1727]

I'm from Columbus Ohio, I'm 7ft tall 420lbs and 35years old. I found out 3weeks ago that I'm XXY, and have felt so alone figuring myself out until I saw you video. It's nice to know that I'm not alone with this shit. I recently started injections. They suck but total agree on the highs and lows of it. I keep all my weight on my torso and it's been a long and depressing and exhausting road for me. It is nice to finally have some answers on what I feel like and why. Thank you for being open with ur XXY it has helped me during my beginning of this crazy journey.

[@LivingwithXXY]

WOW thank you for messaging me. If you have facebook there is a group a friend of mine started and its to help introduce you to more men that have it. facebook.com/groups/182753495837871

[@LivingwithXXY]

Also if you go to www.genetic.org you can find out lots of information to help you.

[@anat.327]

Blake, Hope all is well !! My son is 8 yrs and was Dx. XXYY do you have any kids? Sorry for my direct question. The internet had so much info that is overwhelming and learning from people who had the syndrome makes it easier to understand.

[@wedabest408]

This has been so helpful I just found out my son may have it through an early non evasive chromosome test and I was so upset because I have seen horror photos and stories and this is the first voice of reason I’ve come across..I am gonna have a second test to be sure but if it’s not a false positive I’m gonna start him with the treatments early so he can be okay..I was so scared and even considered an abortion..you look so happy and healthy so this helps me a lot thank you

[@markcaesar4443]

Becky, don't worry about it. I found out I have KS at age 46, 3 years ago, and until then I had no idea. Sure, I knew something was different but it never stopped me leading a full life and excelling at what I did. You are so lucky to know your son will have KS, you will be able to explain things to him and get him the Testosterone when it's appropriate. This is not a sentence to living an inferior life at all, help him thrive and he will make you proud.

[@evoyt2113]

does he have Ks?

[@Max-lx8xk]

Becky does he have it

[@CashLundProd]

My mom told me about my Klinefelter’s syndrome when I was 13, she knew before I was born that my life was going to be different. I had gender dysphoria for about 3 years and like about 1 year ago is when I started my TRT, I’m 25 turning 26 this year and I feel great now! I was in denial at first and I didn’t tell friends or guys I was dating because due the fact that they would leave. My beloved boyfriend loves me even more because of my syndrome, he thinks it’s awesome, I think it’s annoying that we with KS have to take TRT for the rest of our lives to function like any other men out there without our condition.

[@LivingwithXXY]

It’s part of our lives and you live with it or without it. It could be alot worse

[@abdoulghanidaib335]

Thanks for sharing your story you such an inspiring keep doing this is we need some one like you

[@LivingwithXXY]

Well thank you for the kind words. Hope you are feeling better! Keep realizing what you are good at and use those to your advantage!

[@robertshackleton5830]

Thanks mate. This is awesome. Stuck with it in the UK, only found out 1.5years ago. I don’t know anyone else in Manchester with it, which can be hard. This is helpful!!!!!

[@LivingwithXXY]

I know lots of people in the UK that have it. You are not stuck with it! its a blessing to have it, Keep your head held high. Let me know if you wanted to meet other people in your area

[@dmarnieabenjamin1342]

Hey I’m a teenager from Manchester. I’m going to my GP soon to see if I have it or not. I have all the signs of it. I just waa yes to know how they treat it in the UK.

[@MattRoseworne]

i was diagnosed at 16 im now 35 years old and i just started taking the shot so thank you for the info on how it affects you it is a really big insight to what i may feel for the next 3 months before i get my next shot. i am also a youtuber looking to help other people with a wide range of disabilities not just klinefelters to live there lives to the fullest to their own abilities. like i live mine to my own, um im gonna subscribe and id love to colab with you talk more about the positive way of the Klinefelter life :)

[@LivingwithXXY]

Hey Matt, Thank you. Where are you from? Australia?

[@MattRoseworne]

Living with XXY yeah I'm in the land down under

[@LivingwithXXY]

Nice! I hope to make it down that way at some point. Im new to youtube so I am just getting the hang of it.

[@helldomine68]

I live in Australia too mate

[@FLYINGWARRIOR19661]

I think it was great your parents knew.....I was born 20 years before you and therefore didn't know there was an issue till much later in life. That is a great advantage those that have it today have....early treatment....my parents were also older..mom was 39 and my dad 50 when I was born.. they too were so supportive snd that makes all the difference. Great videos ...keep it up. Tom

[@LivingwithXXY]

Yes I think the earlier people find out the better, Hence why we need to raise more awareness about it! Thank you

[@ebXXY]

Hi Ryan, hope all is well. Outstanding, keep spending the word. Fellow🇬🇧KS XXY here, diagnosed aged 41 and now 44.

[@LivingwithXXY]

Awesome! Thanks for the positivity from across the great ocean!

[@lindsaydurkin2850]

This is awesome, learning so much!

[@LivingwithXXY]

Thank you for the Support!

[@septimustyrannis321]

I have a lot of the same issues. Many of the people commenting have. The most annoying thing besides not being able to have children is no matter how hard I work it seems like I can’t really build a lot of muscle. I get TRT therapy, but most doctors are reluctant to give you enough to do much of anything. Any thoughts or advice?

[@maazfishriesfishplanet9267]

I came to know 4 yrs back .i had schocked but now i m happy to be mosiac xxy bcz i m free now from slavery of life .my parents dont ask me from anything just say me u do what u want .i have lots of hobby passion n dreams that i want to make them come true.hope i will live till all come true.

[@LivingwithXXY]

Just keep working hard and educating people about it.

[@انسانأقوى]

What is your physical aspect in relation with this desease i have doubt that i have this shit cause i have genecomastia and tall stature and hourglasse body shape however i have body hair and beard what do you think can i be affected by this syndrome

[@ajjohnstone7063]

Having watched a few of these videos I would definitely recommend that guys start the Testosterone therapy as soon as you turn 12

[@br24fm1]

Thank you so much for this, my 7 yr old was just diagnosed recently. Was curious when to tell my son and what to look for. So thanks for this

[@LivingwithXXY]

Glad I could help!

[@yandc1980]

Just got diagnosis with this like last month and I am 38 years old. This has been a long struggle with my doctors for years because if you test normal even low they would overshadow you.

[@annie6688]

Whats the level of normal testosterone in klinefilter syndrome? Means how much low it is?

[@wishicouldsing129]

3 kinds of oil used in the t shots. Cottonseed, mct (a directive of coconut oil), and grape seed oil. Mct and Grape seed need a preservative or go bad in 48 hours on the shelf. Obamacare has outlawed the preservative and only cottonseed oil t shots is being manufactured at this time. Cottonseed oil has many side effects, and I couldn't take them. I went to the gel, but my new choice will be the pellets. I have spoken to all 5 mixing companies in america that do the chemical mixing for pharmaceutical sales, and several technicans who mix these chemicals, and they all say the same thing, do the pellets. I am 66 and just found out I am XXY. But there are other facts you need to know. A male liver holds t levels between 1200 and 1500, and a female liver between 150 and 250. In the klinefelter syndrome, you can be a male with a female liver, which will not allow the t levels to get very high, no matter how much t you take. I was taking a months supply of T every week and my T level never got above 300, cause I have a female liver. Your testis make be producing plenty of T, but your liver will filter it out. Not everyone will have this problem, as the klinefelters varies drastically from from person to person. Once the klinefelters mutates the genetics enough that a vagina is produced instead of a penis, it's called turners syndrome. Female klinefelters is called turners. And it's a female with too much T.

[@ryanthompson6670]

Ryan I used androgel and now I use .08ccin my leg but can't do it by myself plus I had testicular cancer and breast cancer

[@LivingwithXXY]

Why cant you do it yourself?

[@RustyMartin-b9f]

New follower..much appreciated ♥️💯

[@LivingwithXXY]

Thanks for the sub!

[@Dancinginthebigcomfycouchfort]

Help!!! Do I have this? I had a brother and friend that are confused as well as me.

[@Mechinwisdom]

I got it too.. I am 44...I just found out about it 3 years ago. I have never got treatment

[@Mechinwisdom]

@Mr. Nice Guy I am married...I am unable to have kids. 95% sure...I had one testicle biopsy...it was so painful with negative results, I declined to do the other.

[@kab7212]

Are you mosaic or non mosaic. Further is it necessary that people with klienfelter syndrome will always have wide hips?

[@901187]

I found out when I was 25... In your opinion, is the shot better than the gel??

[@LivingwithXXY]

Ive never fully done the gel, I don't like the idea of rubbing on the gel every day.

[@johnvandenakker4757]

I'm 62, found out I was 47-XXY at age 25. I've tried the shots, patches and the gel. In my opinion, the gell (Androgle) 1.62% is the best thing for me.

[@markcaesar4443]

I found out I had KS 3 years ago and I've used the gel ever since. With using the gel you use it every day, you don't get the highs and lows you do with the injections. My doctor says the pellet implants are best for older patients who can forget to use the gel or get the injection. If in doubt, ask your doctor first and if you have an option, try both, see which one suits you best. I'm happy using the gel.

[@mattyice7132]

Living with XXY I did the gel it burned me a little so I switched back to the injections

[@901187]

Thanks for the comments!!! I honestly didn’t know how to check the activity until recently so sorry for the late replies! Lol

[@kevinmcmanus6466]

Letrezole is also effective in reducing breast tissue if it is a problem. I/2 tab 2x's per week.

[@aaronbounds8690]

Kevin McManus where do i get this

[@chadr2604]

I am probably going to get cussed out but does klienfelter cause issues with the back? I notice yalls sides look funny they go straight up and down. Maybe my sides are weird.

[@sirphineasluciusambercromb9114]

Are men with this syndrome more, less, or the same amount as likely as XY or XYY men to be GBTQI+ individuals? Has any scientist studied it?

[@DJ-ip6jl]

I searched it on chat gpt, many times, and it said, that it’s not related to that. ( and by the way, read the comments of men who have this and who are married and can’t have a kid)

[@sanmanivlogs2820]

I have klinflentor syndrome my age 22 I am depression

[@thakordarshan8328]

Bro what's your symptoms

[@claricestarling6510]

Do u take tosteserone,because it will help wit low moood

[@darioassassin]

Avoiding the "pms" from your test shot is very easy: if the testosterone you inject is bound to an enanthate ester (on the label it should say "testosterone enanthate") you should split your dosage into two shots per week equally spaced apart (shot on monday and shot on thursday for example) With this simple trick you' ll avoid those side effects completely

[@chonzen1764]

Its not just the much ester choice but the amount of alcohol needed to get the compound to dissolve in oil. Also simply brand. Some brands just add a lot of alcohol as disinfectant. If the brand just has a high BA content you can put it in the oven with a needle in and bake it for a short while. This will burn off some of the alcohol. Be careful though if you burn off too much the solution will crash (testosterone recrystalizes). Also injection site really matters. Arms can be very debilitating. From experience chest is the absolute best. Two fingers up from your nipple about 1-2 inches inside. Shoulders are more sensitive but also good. Glutes would be great but its awkward to safely inject. You don't want to just use the same 2 sites week after week. That can cause cysts as you keep injecting faster than the body can absorb the oil. At least rotate between 4 sites.

[@wishicouldsing129]

They use 3 different oils for the shot. Cottonseed, is the most common, but I was allergic to the cottonseed. The mct oil and Grape seed oils need a preservative to keep them from going bad, which has been outlawed by Obama care. I have spoken to technical people who mix this stuff for a living. Cottonseed is the only carrier being used in testosterone shots and it makes many people sick causing the high and lows you describe. I think the pellets will be the way I go, for my t supplements..

[@user-tu4jh2if8o]

Do you have any side effects of testosterone like enlargement of breast?

[@LivingwithXXY]

Nope.

[@chonzen1764]

Thats a symptom of the Klinefelter anyways. Testosterone causes gynomastia when abused because it converts to estrogen in the body. As part of a complete monitored TRT protocol this is a non factor. Even if our dosing is off for some reason and you are getting higher than normal estrogen this is will be caught quickly during bloodwork.

[@JR2012now]

I do, it is a thing. Im not happy with it but I eventually accepted it as it being me...

[@JohnOutraVolta]

Thanks for your video!!!

[@LivingwithXXY]

No problem!

[@drnarjindershergill2393]

are there any side effects of testosterone therapy ???

[@nikolinavorkapic936]

Thank you,Ryan,for making this videos. Maybe you can help me..my son is also xxy, he is almost 3 years old...when is the best time to tell him about his condition? Thank you

[@LivingwithXXY]

Personally the earlier the better, its nothing to be ashamed of. You can teach him little things as hes younger and when hes mature enough you can teach him about adoption and donor sperm. Make sure you dont ever tell him he wont be a father, normalize the kinds of ways he can have kids and he will be ok!

[@nikolinavorkapic936]

@@LivingwithXXY thank you very much💙

[@kivumbipius5038]

Maybe I have xxy but hw can find it

[@FLYINGWARRIOR19661]

Ps....its good to see you thin (there is hope for me....have you ever lifted weights ..do you have noticeable muscle gain (hard to tell from the video) but I'm hoping I can gain a little growth as I'm slimming down...ty Ryan.

[@LivingwithXXY]

I have and if I choose to go to the gym I can gain muscle pretty fast, but I've never gotten "huge" because I don't enjoy the gym. I would rather be outside.

[@Wired570]

Is it at all possible to chat about ks? Maybe messenger or email?

[@LivingwithXXY]

facebook.com/livingwithxxy

[@WizardsElite]

I just found out i have this and i might kill myself. 18

[@Wired570]

Monkeyballs take a breath. What’s going on? What or how are you feeling?

[@almi3391]

Monkeyballs sam im 17 and i really hate myself i wanna kill myself i feel different from the others im depressed everyday i cant take it anymore

[@philm4682]

I have kline felter syndrome and i have never been on medication for it. What does testerone therapy do and how does it help?

[@LivingwithXXY]

Energy is a huge one. Motivation can be another factor. Sex drive for some is really helpful.

[@chonzen1764]

Its very helpful but ... You have never had normal to high testosterone levels before. That comes with emotions and feelings you are not used to and not use to managing. That is supposed to be a normal part of puberty. The OP is luckily that he was diagnosed young and able to go through these changes as he grew up. Its much different if you are in your 20s 30s 40s and are now dealing with the emotional effect of these hormones. Not my quote but someone else "Things that used to make me all emotional dont bother me at all anymore and things that never bothered me at all make me see red."

[@adilbasharat]

Does this result in a small penis and premature ejaculation ? I think I might have this syndrome

[@krupangdarji4737]

i have gynecomastia am i have klinfelter?

[@LivingwithXXY]

I’m not a doctor so I can’t diagno you

[@claricestarling6510]

Not necessarily, but yep talk to your. Doctor,for a possible diagnoses

[@RubenMR69]

Thank You 👍

[@LivingwithXXY]

Thank you for the support

[@jackben7584]

Do u take patches for it?

[@LivingwithXXY]

No Ryan is on the shot!

[@BhootFMNetwork]

Being childfree is better

[@Mr360attack]

What did the shots do

[@LivingwithXXY]

Our bodies do not make Testosterone. So the shot is one way to put the testosterone back in my body so I can live a more normal life.

[@Mr360attack]

Living with XXY i think i have klinefelter syndrome

[@LivingwithXXY]

The only way you will truly know is to get a genetics test.

[@izharkhan5659]

Can we join in army in kf syndrome

[@LivingwithXXY]

Depends on the country.

[@izharkhan5659]

@@LivingwithXXY what is in ur country are they allowing

[@jacksonbulloch333]

im 31 ive known since i was 17 and over been in the australian navy for 6 years, for myself they will only post me to a ship that can store the test and a medical officer that can administer, so if you get deployed for long periods of time it should be ok . but just remember you will not get a rest day for the injection , so harden up buttercup ​ @Living with XXY

[@susanvonderahe1088]

Thank you for your videos! I have a 13 year old son with XXY. We found out two years ago. He als has HF Autism. We have a lot of big decisions ahead of us as his parents. Especially in regards to testosterone therapy. Your videos are very helpful and give us a lot of hope as parents. I can't wait to show them to our Kyle. I think it will inspire him to keep working hard at life even when it's difficult. Couple of quick questions that maybe you could talk about in upcoming videos. 1. My guy seems to be so tired all of the time. We believe it's from lack of muscle tone. He doesn't last long at physical activity. We currently have him in physical therapy and try to stay active as a family. He needs to sleep over 12 hours a night. Is this something you experienced as well? How did you manage the fatigue? 2. Does testerone therapy help with the fatigue? Does testosterone therapy make you irritable, angry, etc... Does it help with mood swings and emotional outbursts or make them worse? 3. I have heard as he gets older (late teens, early adulthood) he is at risk for autoimmune diseases such as lupus and osteoporosis. What is your personal experience with this information? Sorry for all of the questions. We live in Phoenix. We have one of the best pediatric hospitals in the country, and the geneticists didn't seem to have many answers or much info for us. It's always better to hear from someone experiencing it directly. Thank you again for being such a great resource!!!!

[@LivingwithXXY]

Hi Susan, is he about to start TRT Treatment? 13 is when I started and it really helped. Maybe he's sleeping too much, I'm not a doctor though. No I never slept that much when I was a kid. TRT treatment was life changing and if you ask the guys who use it might say the same thing. Lots of my Xxy friends are on it. The anger and mood swings ECT depends on the kid, his up bringing ECT. They say that we have a higher chance for all that stuff but I don't have any of it. I wouldn't worry about later in life, I would concentrate on trying to make his life the best now and worry about that later. Look up TRT (test) therapy. Thanks for the support.

[@ChristineCorey]

Thank you so much, so helpful!

[@LivingwithXXY]

Glad I can help.

[@kevinmcmanus6466]

27 years in the gym business. With KS I know that the shots are the only effective treatment. The gel isn't worth a damn.

[@philm4682]

Kevin McManus effective treatment for what? I have lived with kline felter syndrove all my life and never been on any medication apart from asthma inhalers and medication for acne

[@muhammed1673]

what about pill? is it effective??

[@chonzen1764]

@@muhammed1673 What pill? Most oral steroids are like Tylenol, hard on the liver and shouldn't be taken as a regular protocol.

[@hamdankhan9424]

Iam having all symptoms except the inability to produce sperm can u please tell me is it normal?

[@Thebigwand]

I have xxy as well, I was born with a big penis and small testicles.

[@jhb61249]

Is homosexuality common with this genetic condition?

[@LivingwithXXY]

NO! An extra X doesnt make you gay. FFS people

[@lawenforcementlawenforceme6178]

I had klinefelter's syndrome so I am funny for or tails L'Amour the comedy Joker around yeah

[@evoyt2113]

it says like u lack on intelligence how did u was. in school?

[@LivingwithXXY]

The internet says lots of false things. I did amazing in culinary school, got straight As.

[@evoyt2113]

i have some of the symptoms but i dont know if. i have it i should do blood test or what?

[@LivingwithXXY]

Only way to really know is if you get a karyotype test

[@neverstoplearning3451]

​@@LivingwithXXYyes I have also this symptoms and I am also topper of my school and I have ranked 27 k in Jee advanced exam which is the toughest exam of India and 2nd toughest exam of world only 1% people qualify this exam and I am one of them but in college I am depressed

[@NYCBigBull]

Split your T in two doses per week.. and double the dose.. enjoy it

[@LivingwithXXY]

Na man, Im not doing it for the gym gains. I do it to live a normal life. My T levels are high 700s and I feel great. Thanks though.

[@lyndenmanning8669]

homophile ?