Dealing with Klinefelter's Syndrome / XXY? Come here for friendship and support

[clarkea]

oh sorry quicker then I thought https://todayhealth.today.msnbc.msn...82-miracle-baby-born-from-single-frozen-sperm

**note** I was wrong it was eight frozen and only one viable one after "defrosting" lol still that is crazy good she is able to do that.

thats just with rozen sperm i think isnt it?

i have found this and it looks like 101 babies have been born.

Sounds promising anyway

https://humrep.oxfordjournals.org/content/25/3/588.long

 

[faithbabies]

hey ladies, mind if i join? i've been a member to this site for awhile but didnt know about this group. Will keep my story short though it's really a long long one lol
My hubby and i started trying on our honeymoon lol we couldnt wait! we've been married 7 years next month...after about a year and no bfp my obgyn did some tests on me and everything was normal so he ordered SA on my husband..showed zero sperm..was referred to a urologist who said no blockage i suggest yall adopt...referred to fertility specialist who ordered the chromosome tests that showed Klinefelter's XXY and she referred us to another urologist who did biopsy of both testicles and found no sperm..we decided to move on to donor sperm with IUI while doing foster/adopt training. We got pregnant on 2nd IUI but miscarried and due to finances and our foster babies we decided to do home insemination. we've used three shipping donors and now are using a good friend that lives nearby..he's a huge blessing to us and if/when i get my bfp he will be uncle. We have been blessed to be able to adopt 2 daughters and working on our first son...there were times i hated Klinefelter's but as i look at my babies today i'm thankful my husband has it in some ways...he just started seeing an endocrinologist and was put on Testosterone as we are hoping it will help his moods/etc. His T levels are on low side of normal but reading and researching the topic has helped me realize K guys need more testosterone than the average guy..i research alot as i'm a nurse haha
looking forward to getting to know yall and share in experiencing bfp's too

 

[Stardust1]

hey ladies, mind if i join? i've been a member to this site for awhile but didnt know about this group. Will keep my story short though it's really a long long one lol
My hubby and i started trying on our honeymoon lol we couldnt wait! we've been married 7 years next month...after about a year and no bfp my obgyn did some tests on me and everything was normal so he ordered SA on my husband..showed zero sperm..was referred to a urologist who said no blockage i suggest yall adopt...referred to fertility specialist who ordered the chromosome tests that showed Klinefelter's XXY and she referred us to another urologist who did biopsy of both testicles and found no sperm..we decided to move on to donor sperm with IUI while doing foster/adopt training. We got pregnant on 2nd IUI but miscarried and due to finances and our foster babies we decided to do home insemination. we've used three shipping donors and now are using a good friend that lives nearby..he's a huge blessing to us and if/when i get my bfp he will be uncle. We have been blessed to be able to adopt 2 daughters and working on our first son...there were times i hated Klinefelter's but as i look at my babies today i'm thankful my husband has it in some ways...he just started seeing an endocrinologist and was put on Testosterone as we are hoping it will help his moods/etc. His T levels are on low side of normal but reading and researching the topic has helped me realize K guys need more testosterone than the average guy..i research alot as i'm a nurse haha
looking forward to getting to know yall and share in experiencing bfp's too

Hi there your little girls look very precious. Can I be cheeky and ask about your husbands moods, does he have mood swings? my husband is producing testosterone but we haven't gone as far as finding out about hormone treatment for him as our GP wanted our referral to the ivf clinic to be sorted first.

 

[faithbabies]

stardust~~ hi! and thank you so much! YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway

 

[theclarks8687]

oh sorry quicker then I thought https://todayhealth.today.msnbc.msn...82-miracle-baby-born-from-single-frozen-sperm

**note** I was wrong it was eight frozen and only one viable one after "defrosting" lol still that is crazy good she is able to do that.

thats just with rozen sperm i think isnt it?

i have found this and it looks like 101 babies have been born.

Sounds promising anyway

https://humrep.oxfordjournals.org/content/25/3/588.long

It was frozen sperm the retrieved from a guy who only had 8 they could find. It sucks that again there isnt enough information out there for us know more about KS and especially KS involving fertility.

 

[theclarks8687]

stardust~~ hi! and thank you so much! YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway

Welcome! your daughters are gorgeous. DH and I are looking into fostering in the next yr. In fact we are supposed to go to a seminar on the 25th to learn more about it if everything goes right.

 

[theclarks8687]

stardust~~ hi! and thank you so much! YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway

My hubby has all those moods. In fact he is looking into the possibilities of being bipolar but I am wondering if it stems from the KS. Unfortunately it is hard to tell with him because a LOT of his family is bipolar.

 

[faithbabies]

theclarks~~ thank you so much! i updated the pic, the first pic was about a year old and now we are in adoption process with ethan so i wanted to include him i am so glad yall are looking into fostering..it's challenging but def worth it! i wish u lots of success in that journey! I thought my hubs was bipolar too for awhile..but some days i think i am...seriously tho it wasnt until i researched KS more that i realized how similar the symptoms can be as related to bipolar...the men i spoke with says without their T therapy they are monsters. I do think my hubs can control more of his moods to tell u the truth i think he was just allowed to get away with it so long it's harder for him to calm himself down now. But when he's good he's really good so i love him even in the fits lol

 

[silverbell]

Welcome, faithbabies. This thread has only been running a few days so you've come in at the right time.

What lovely children you have

Good luck with the donor inseminations. I really wish it wasn't so expensive for infertile couples to just try to create a family.

 

[theclarks8687]

theclarks~~ thank you so much! i updated the pic, the first pic was about a year old and now we are in adoption process with ethan so i wanted to include him i am so glad yall are looking into fostering..it's challenging but def worth it! i wish u lots of success in that journey! I thought my hubs was bipolar too for awhile..but some days i think i am...seriously tho it wasnt until i researched KS more that i realized how similar the symptoms can be as related to bipolar...the men i spoke with says without their T therapy they are monsters. I do think my hubs can control more of his moods to tell u the truth i think he was just allowed to get away with it so long it's harder for him to calm himself down now. But when he's good he's really good so i love him even in the fits lol

When I first going off the lists of sign of KS I was like yup yup yup oohhhh thats what is causing that My husband is determined to have atleast one adopted child on top of anything else we may do. And that is so funny about the letting them get away with it. My hubby would be a bit of a monster if I wasnt as stubborn as I am and let him walk all over me. lol

 

[theclarks8687]

Good luck with the donor inseminations. I really wish it wasn't so expensive for infertile couples to just try to create a family.

Amen

 

[Stardust1]

stardust~~ hi! and thank you so much! YES he has huge mood swings..more than me haha Seriously he has many of the Klinefelter traits like mood swings,depression,temper fits, very sensitive, low self esteem, etc. His T levels have always been normal according to labs, just on the low side of normal but many men with Klinefelter's have told me that they started T therapy preteen and it always helped them...anyway,he's had 3 injections so far and seems to actually be a bit better good luck in your IVF journey, i wish we could do ivf with sperm donor...or wish we could afford to do it anyway

Oh you could totally be describing my husband there apart from the low self esteem, he is also unbelievably impatient and very very intolerant haha but lovely with it

 

[faithbabies]

silverbell~ thank you for the warm welcome too and the compliment! I also wish it wasnt so expensive to do fertility treatments..but it's not just the money though that's a big part..if we do another IUI we have to pay $350 just for the lab because it's been over a year since i've been and then the iui with everything is like $2500 plus sperm from a sperm bank around $1000...it's alot of mulah for one try. Besides that we live an hour away from our RE and you cant bring your kids (duh) and we dont live around family that could keep them for every appt. so it sucks...also the main clinic where we would do the iui is about three hours away i do think about going back sometimes though.

well ladies i'll be back probably tomorrow...have some sick kiddos over here nite!

 

[clarkea]

Faithbabies your children look adorable.

Where is everyone from anyways?
Im from Preston, Lancashire, England.

My DH does not have mood swings at all. He is sooo laid back. In fact if he was even more laid back he'd fall asleep lol.
He never stresses or anything like that! Im the stressy one lol. He calms me down! he he
We was wondering why after IVF why he'd need the injections as he has managed without them so far!
Really he just never stresses out. I must admit though when we found out about the KS and the infertility he lost it for a couple of weeks. He just blamed himself so much. But he soon came round and is now back to his normal self.

 

[silverbell]

My DH does not have mood swings at all. He is sooo laid back. In fact if he was even more laid back he'd fall asleep lol.
He never stresses or anything like that! Im the stressy one lol. He calms me down! he he
We was wondering why after IVF why he'd need the injections as he has managed without them so far!

Same here My DH doesn't have mood swings at all. He's very laid-back and calm. The only symptom of KS my DH has is the body shape. He's gotten away very lightly from what I've read.

The Testosterone replacement after IVF/biopsy etc is because he has a very increased risk of getting brittle bones - osteoporosis in the future. As well as premature ageing, increased risk of breast cancer etc. The Testosterone is required to help to try to combat the chances of these things happening. Just like when women need HRT when their oestrogen drops after the menopause, so our KS partners need replacement because their testosterone is low. For their future health. Any improved energy or moods is just a bonus.

 

[clarkea]

My DH does not have mood swings at all. He is sooo laid back. In fact if he was even more laid back he'd fall asleep lol.
He never stresses or anything like that! Im the stressy one lol. He calms me down! he he
We was wondering why after IVF why he'd need the injections as he has managed without them so far!

Same here My DH doesn't have mood swings at all. He's very laid-back and calm. The only symptom of KS my DH has is the body shape. He's gotten away very lightly from what I've read.

The Testosterone replacement after IVF/biopsy etc is because he has a very increased risk of getting brittle bones - osteoporosis in the future. As well as premature ageing, increased risk of breast cancer etc. The Testosterone is required to help to try to combat the chances of these things happening. Just like when women need HRT when their oestrogen drops after the menopause, so our KS partners need replacement because their testosterone is low. For their future health. Any improved energy or moods is just a bonus.

Only sympton of KS is Infertility. He has plenty of muscle and i mean plenty! One Doctor didnt believe it when we told him he has been confirmed KS.
Its meant to be hard to gain muscle isnt it?
i keep hoping and praying they got it wrong but about 6 sperm tests cant be wrong can they!

ahh i see about the injections. but my DH's testorone level is apparently 'normal'? but makes sense on the osteoporosis etc...

 

[silverbell]

Only sympton of KS is Infertility. He has plenty of muscle and i mean plenty! One Doctor didnt believe it when we told him he has been confirmed KS.
Its meant to be hard to gain muscle isnt it?
i keep hoping and praying they got it wrong but about 6 sperm tests cant be wrong can they!

ahh i see about the injections. but my DH's testorone level is apparently 'normal'? but makes sense on the osteoporosis etc...

Oh, sorry, yes, obviously infertility for my DH too.

Yes it is meant to be very hard to gain muscle. You're right - 6 sperm tests can't be wrong but that will just prove azoospermia. I guess the genetics test for KS (karyotype) could always be wrong, but it's highly doubtful.

Oh I see. That's unusual about the normal Testosterone. Most things I've read have suggested it's a big side effect of having KS. In that case I don't know whether he'd need it or not - it would be a good idea to get him to see an Endocrinologist to discuss the KS in more detail I would think.

 

[clarkea]

Only sympton of KS is Infertility. He has plenty of muscle and i mean plenty! One Doctor didnt believe it when we told him he has been confirmed KS.
Its meant to be hard to gain muscle isnt it?
i keep hoping and praying they got it wrong but about 6 sperm tests cant be wrong can they!

ahh i see about the injections. but my DH's testorone level is apparently 'normal'? but makes sense on the osteoporosis etc...

Oh, sorry, yes, obviously infertility for my DH too.

Yes it is meant to be very hard to gain muscle. You're right - 6 sperm tests can't be wrong but that will just prove azoospermia. I guess the genetics test for KS (karyotype) could always be wrong, but it's highly doubtful.

Oh I see. That's unusual about the normal Testosterone. Most things I've read have suggested it's a big side effect of having KS. In that case I don't know whether he'd need it or not - it would be a good idea to get him to see an Endocrinologist to discuss the KS in more detail I would think.

its strange then how my DH has plenty of it.
yeah i agree its highly doubtful that the karyotype was wrong.

We went to see an endocrinologist in Jan this year, it was them who looked at my DH and said are yuo sure its been confirmed xxy. They had to have a feel of his chest and agreed that there was absolutely no man boob there and was all muscle.
She had to call another guy in to have a look as well.
They said that he is probably mosaic but confimed it in a letter that he was all 47xxy. They did however say that even if the karotype came back as 47xxy he is probably mosaic as they cant test the whole sample?

i wish they would make there minds up lol.

 

[faithbabies]

clarkea~~ thank you for the compliment i am from Texas ....
you are lucky your DH doesnt have as many KS symptoms..i am more laid back so we even each other that but sometimes i want him to calm me down and it's hard lol also, my DH has always had normal testosterone but for KS hormones work differently and many KS patients have told me that the normal level for them is lower than just your average joe's testosterone levels. Most KS patients start taking T therapy as pre teens. Also if your DH has any of the symptoms..there are so many, even in the sexual area, T therapy will help. Our endocrinologist said T therapy will help impove his libido and i was like "oh no can't u give him something to slow him down? lol i'm just not one to want it every day lol " luckily he's not had any issues there, it's more due to his moods and energy level. I've already seen a difference in just a month of shots.
speaking of mosaic Klinefelter's...they usually are not infertile. (according to research)

 

[silverbell]

Yeah, my DH has had absolutely ZERO problems in the bedroom department, despite having a low Testosterone (8). His Endocrinologist thought there might have been past problems because of it, but he's never, ever had any issues or libido problems. In a way it's a shame he didn't, as it may have prompted us to go to the docs sooner and find out what was going on and we'd have known sooner etc. But c'est la vie!