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

[clarkea]

You are further then me when it comes to getting a date for sperm retrieval. I hadnt mentioned this but we had DH checked out some more and his FSH levels are off the charts high so we were told likely there is NO sperm at all anywhere but we have an appointment at the end of the month to speak to a specialist in Klinefelters 2 hours away.

i think you still have to have hope. My DH levels were fine? Slightly higher but still in the normal range. They told us that there is only a 3% chance of finding some but i always think, why cant we be in that 3%.
We have been told different things by different doctors. Firstly that we have 0 chance of having a boy if we get pregnant and then another doctor said its 50/50.
I dont think anyone knows tbh exactly what goes on.
They have said when they do the sprem retrieval that it might knock something out and then hmy DH would have to be on injections for the rest of his life to balance out his hormones.
They have said its very very risky but we decided that its a risk worth taking.

whats going to happen at your meeting then?do you know?

 

[silverbell]

My DH and i have an app on 26th of this month, we get to find out a date for his op for sperm retrieval. i hope so much that its quick as we only ever moved hospitals as they said there was no waiting list. But here we are again waiting!!!

i do have hope that they will find sperm when they do the retrieval.

I hope they find sperm for you too, clarkea. 26th will soon be here.

You are further then me when it comes to getting a date for sperm retrieval. I hadnt mentioned this but we had DH checked out some more and his FSH levels are off the charts high so we were told likely there is NO sperm at all anywhere but we have an appointment at the end of the month to speak to a specialist in Klinefelters 2 hours away.

It's so strange the different things we all get told. DH's FSH was in the mid 30's and sometimes 40's and he had a Testosterone of 9. Our specialist - Mr Ramsay, the best Consultant re azoospermia in the UK - said that the high FSH is actually a good sign and shows that the body has recognised a problem and is trying to rectify it. In fact, because my DH's FSH was so high it meant he didn't need to be put on medication to try to improve/increase any sperm production going on.

We were also told by Mr Ramsay that men with KS in his experience have a 5% chance of finding sperm (going by his microTESEs performed). We were obviously warned the chances were there would be nothing ... and there wasn't. But we're both glad we knew for sure before embarking with donor sperm.

DH has an appointment with a Genetics Specialist next week in order to find out more about KS and what it will mean for him in the future. I'll be sure to report back here if I find anything interesting.

As for me I just had my 3rd IUI yesterday, having had 2 failed cycles and an abandoned one last month due to overstimulation. Fingers crossed this time. It's now been over 1 year since we found out about the azoospermia and almost 2 years since we started TTC. Feels like a lifetime.

 

[theclarks8687]

Clarkea, you should definently be hopeful, you never know

Silverbell, that is interesting because we were pretty much told the opposite about the fsh, I'm looking forward to the specialist we are seeing at the end of the month to get more info which I will also share. But we really don't have much hope because two docs have told us our options are pretty much adoption and ds, and I really pray you get your bfp hun!

 

[theclarks8687]

I've never been so excited to get a "normal" period in my life lol but I got one today. Yay me.

 

[silverbell]

I've never been so excited to get a "normal" period in my life lol but I got one today. Yay me.

Great news, clarks!

 

[Stardust1]

Yay clarkes you must be so happy. I'd be fascinated to hear any info you guys get from the klinefelters specialists my dh was offered no assistance or advice at all when we were discharged from the NHS clinic. I am due to see my endocrinologist next Monday which is my yearly check for my prolactinoma so I'm gonna ask him what he recommends my dh does next.

 

[silverbell]

Well I attended DH's genetics appointment today about KS and I think he found it really reassuring.

He has had it confirmed that he's not going to die early or have any other significant medical nightmares looming ahead in his future. The only real problem that he needs to be aware of is the increased risk of osteoporosis and this is due to the low Testosterone with all KS men (due to the inadequate testes development). As my DH has already had a normal bone scan he now knows he's got nothing to worry about at present and even going on Testosterone isn't as urgent right now as his Endocrinologist had suggested. Though it's still recommended to avoid bone problems in the future.

She confirmed KS was a complete fluke and the only thing they've managed to notice about it is that there is an increased incidence of KS born to older mothers due to the egg quality deteriorating with age (DH's wasn't an older mother).

KS sufferers always have a raised FSH and this is because the body has recognised the problem and is trying to sort it out. This level will remain raised even with Testosterone replacement, apparently, and is nothing to worry about.

Any sperm found in the few select men with KS to produce sperm (very small percentage - most unfortunatley don't produce any) can indeed carry that extra 'x' chromosome, so the condition could be passed on again. It would need to be checked for preimplantation genetic diagnosis prior to ICSI and IVF if you want to be sure KS isn't passed on.

She said it's important for DH not to feel any different and he's still a healthy man who functions normally (other than no sperm and low Testosterone) and is expected to live as full and healthy a life as most other men.

I can't remember anything else - think that was it. Obviously we didn't talk too much about sperm because we know we don't have any in our case.

 

[clarkea]

Well I attended DH's genetics appointment today about KS and I think he found it really reassuring.

He has had it confirmed that he's not going to die early or have any other significant medical nightmares looming ahead in his future. The only real problem that he needs to be aware of is the increased risk of osteoporosis and this is due to the low Testosterone with all KS men (due to the inadequate testes development). As my DH has already had a normal bone scan he now knows he's got nothing to worry about at present and even going on Testosterone isn't as urgent right now as his Endocrinologist had suggested. Though it's still recommended to avoid bone problems in the future.

She confirmed KS was a complete fluke and the only thing they've managed to notice about it is that there is an increased incidence of KS born to older mothers due to the egg quality deteriorating with age (DH's wasn't an older mother).

KS sufferers always have a raised FSH and this is because the body has recognised the problem and is trying to sort it out. This level will remain raised even with Testosterone replacement, apparently, and is nothing to worry about.

Any sperm found in the few select men with KS to produce sperm (very small percentage - most unfortunatley don't produce any) can indeed carry that extra 'x' chromosome, so the condition could be passed on again. It would need to be checked for preimplantation genetic diagnosis prior to ICSI and IVF if you want to be sure KS isn't passed on.

She said it's important for DH not to feel any different and he's still a healthy man who functions normally (other than no sperm and low Testosterone) and is expected to live as full and healthy a life as most other men.

I can't remember anything else - think that was it. Obviously we didn't talk too much about sperm because we know we don't have any in our case.

Thats what we were told at our Endocrinology appointment.
It seems like you have done yours the other way round to mine. We had our endocrinology apps first and still waiting for SSR.
THey keep trying to get us to go to another app but not much point until after sperm retrieval.

 

[silverbell]

Thats what we were told at our Endocrinology appointment.
It seems like you have done yours the other way round to mine. We had our endocrinology apps first and still waiting for SSR.
THey keep trying to get us to go to another app but not much point until after sperm retrieval.

This was an actual clinical genetics appointment - seperate to Endocrinology - as DH wanted a genetic specialist's view and knowledge because our Endocrinologist only really seemed interested in getting him put on Testosterone. DH had seen the Endocrinologist prior to sperm retrieval, but obviously - like you say - there was no point seeing him again until afterwards because he couldn't go on Testosterone until after the sperm retrieval anyway. So DH has been with the Endocrinologists for a few months prior to the retrieval, but this was a genetics appointment specifically for a discussion about KS and the implications which DH had requested.

Sorry if I hadn't made it clear.

Do you know when the SSR will be done? EDIT - sorry I had a look back as I could have sworn you'd said and I see you have an appointment in 2 weeks and should get more of an idea. Hope it's not too long for you both.

 

[theclarks8687]

I had read before about the older mother thing and DH's mom was in her early twenties so I knew we kinda through that idea out the window. Our appointment is also in two weeks and it will be interesting to compare notes.

 

[clarkea]

Thats what we were told at our Endocrinology appointment.
It seems like you have done yours the other way round to mine. We had our endocrinology apps first and still waiting for SSR.
THey keep trying to get us to go to another app but not much point until after sperm retrieval.

This was an actual clinical genetics appointment - seperate to Endocrinology - as DH wanted a genetic specialist's view and knowledge because our Endocrinologist only really seemed interested in getting him put on Testosterone. DH had seen the Endocrinologist prior to sperm retrieval, but obviously - like you say - there was no point seeing him again until afterwards because he couldn't go on Testosterone until after the sperm retrieval anyway. So DH has been with the Endocrinologists for a few months prior to the retrieval, but this was a genetics appointment specifically for a discussion about KS and the implications which DH had requested.

Sorry if I hadn't made it clear.

Do you know when the SSR will be done? EDIT - sorry I had a look back as I could have sworn you'd said and I see you have an appointment in 2 weeks and should get more of an idea. Hope it's not too long for you both.

no its clear, i just get mixed up as weve been to so many, we have had endocrinology apps and the genetic specialist app. Roll on next Tuesday!

 

[clarkea]

I had read before about the older mother thing and DH's mom was in her early twenties so I knew we kinda through that idea out the window. Our appointment is also in two weeks and it will be interesting to compare notes.

same here my dh mother was young too.
good luck for your app, our app is hopefullty to get a date on ssr.

 

[Shocked4sure]

Hi there, 45 years old and married just over a year ago, Like many others my wife thought she has the issues ttc. imagine my shock as I learned that I had Klinefelters. What a loss I feel, though we will try to extract sperm from my testes I know the likelihood is less than 20% according to a top urologist. My wife and I know it's not ideal but our only option is sperm donor. My wife is excited, and I try to be too but I'm just devastated. She doesn'T see me differently, or think less of me but I just feel sad. It feels like a death almost ....a deep loss for what might have been...could have been...should have been like others who decide to have a family. I am not one to say ..why me .... But I just wish it was different. Will I have the same bond with a sperm donor baby ..I hope so ...I'm sure I will...but I'm just sad..."stumbled across this site and thought I'd post. I should say I hv few symstoms of klinefelters..shy quiet kid...minor reading difficulties, small testes, little extra weight gain in hips (thought that was inherited)..... anyway ..in sept we will try to extract sperm...wish me luck..as we will need a sperm donor back up too...things could be a lot worse I guess....

 

[theclarks8687]

I'm sorry you are having to deal with this. My hubby has had a lot of those same feelings. I rarely see my DH cry in 6 yrs but he cried over the loss of biological children. I k.ow men are supposed to be tough but with things like this no one is tough. I wish you all the lick in the world in September.

 

[Shocked4sure]

Thank you for your well wishes. Today has been a better day. since I just signed up here I'm unfamiliar with your story other than seeing a post saying two docs said adopt or sperm donor......how do you feel about. How does your dh feel about sperm donor......my wife thought I should be the one that selects the sperm donor ...which is great and I will review it with her anyway but it helps me know I had a piece in creating our baby ....not the way I,d wish it went down .....but still I'd have that connection........thanks for listening..tom

 

[theclarks8687]

We have decided to go the sperm donor route. I had originally told my DH the same thing about about him picking. But in the end we used a friend of ours. We got pregnant once in Feb but miscarried in April. So we are back to trying again with a known donor.

 

[Shocked4sure]

Well I wish you all the luck in the world ...as they say ..good things come to those who wait.

 

[theclarks8687]

So ladies how are we doing this week? And it is official getting pregnant is not really my problem, now staying pregnant is a whole other thing.

 

[Stardust1]

Oh that's wonderful news you must be thrilled I have till next Friday which is my official test date but I've been testing every day to see when my hcg trigger shot is out of my system as I'm terrified about getting a false positive!
here's to a happy and healthy 9 months for you, I have everything crossed and I'm so pleased for you after everything you went through

 

[theclarks8687]

I appreciate that star and I pray you get a sticky bean for yourself!