Hello everyone.
Wow, it's been a really long time for me since I've been here.
Quick background (to cut a VERY long story short) 3 unsuccessful IUIs, 2 IVF (2nd with ICSI), of which the first 2 I got BFPs but lost both very early. My last try was -ve. This week we were all keyed up to have our one and only frostie - but they rang an hour before we were due in hospital to say that it hadn't made it. So that's that again.
I'd said, last time, that this was it - 3 goes was enough.
But, that's before I found out I'm a mutant - yes, it turns out I have a mutated MTHFR chromosome (don't really know what that means). It was the last in a LONG line of tests I've had for everything, that have never turned up anything - before now. But they did some test and found this. They actually offered me the test before my last IVF, but I would have had to delay it as the results take around a month to come through. I thought about it, but said, 'oh, you've never found anything before, let's do it but not delay the cycle'. So I went ahead. Only after we got that -ve, I thought, oh, well, might as well get tested for this too. I think one of the selling points was that they test DH, too, and it was nice for him to have to share the pain for once (this thing makes you really crazy, doesn't it???)
Anyway, it came back positive - from what I can gather, this means I am anything up to 14 times more likely to miscarry than someone who doesn't have the condition. the 2 m/cs were the indicator for the dr, but apparently it's still a pretty rare condition. The dr says she doesn't think this is why I haven't been able to get pg, but it's probably why I've lost both positives.
When the nurse told me, I started crying and telling her how happy I was. I think she thought I was mad, but I really meant it - finally they have found some explanation for at least some of what I have gone through these last years.
I told DH - we joked around about 'I guess that's why you turn green when you get mad' and stuff like that.
Well, there's good news and bad news. The good news is, it's perfectly treatable. I need to take 10x the amount of folate as 'normal' people - the condition interferes with the body's ability to absorb folate, and if I don't, I not only am much more likely to m/c but also more likely to have a child with a severe disability (all the ones that folate is meant to prevent), or Downs, for some reason.
I also need to have injections of something that's like heparin that stops your blood from clotting - whatever this thing means, apparently my blood clots too much and interferes with the embryo trying to implant.
All good news.
The bad news. I feel like, instead of being at the end of the process and ready to get some closure on this whole thing, I'm just starting again. I think of everything I went through to get to those 2 precious +ves, and think how easily I could have had a baby by now if this had been diagnosed at the time - instead, I'm back at first base. Not to mention all the money I've spent....
And, of course, there's the eternal fear that I'll have all this renewed hope and it still won't work.... for some other reason...
But I thought I'd post here as I'd never heard of anyone here mentioning this, and in all my travels on similar sites I'd never heard of it (or perhaps just didn't notice it). When I've searched since, there is a bit around, and certainly diagnosis seems to bode well for treatment.
So, no closure for me after all. In, I guess, a good way.
Really hope this helps someone else - and would love to hear that I'm not alone in this...
love and pg thoughts to all,
jaye
I'm an MTHFR mutant! warning - long post.
Hi Jaye
Do you remember me ? anyway I am so pleased that at least you have an answere. I can relate to you feeling like it should be closure but now its all sparked up again as I have not had Treatment for nearly a year and have somehow switched off to it all . I was even beginning to dout was i doing this for the right reasons ? did I really want a baby or is it cause I cant have one ? I am a very determind person and when I want something I damn well go for it till I have got it . not winning this battle is teaching me thick and fast that you have to be patient and you cannot have everything you want in life ! I am 80% sure I do want one for the right reasons but the other 20% still worries me . so I decided to have a year out .THEN my sister offerd her eggs to me a couple of weeks ago, I knew this might be an option but we were leaving this as a last result which I guess really this will be it THE LAST GO! so now my head is all excieted for the want to go again NOW but I am going to wait till next march , I feel that I need to really think things through . I dont know if anyone else feels the same as me probably not I am just crazy you know me !!!! as part of the switching off period I was beginning to think of all the bad points of having children and not thinking of all the romantic wonderfullness of it all which has helped but the nice bits always win in my head which to me means that I still do want children . so the answere to your question no I dont have the same condition and I am sorry I cant help you on that but I can relate to it all coming alive again!!!!!
sorry did I wander off the subject a bit
guess I needed to get that off my chest and you coped for it !!!!!!
Good luck for your next step when will treatment begin?
having a party today as it will be my 2000 post watch this space for the party to begin you are invited !!!!
Trace x
Do you remember me ? anyway I am so pleased that at least you have an answere. I can relate to you feeling like it should be closure but now its all sparked up again as I have not had Treatment for nearly a year and have somehow switched off to it all . I was even beginning to dout was i doing this for the right reasons ? did I really want a baby or is it cause I cant have one ? I am a very determind person and when I want something I damn well go for it till I have got it . not winning this battle is teaching me thick and fast that you have to be patient and you cannot have everything you want in life ! I am 80% sure I do want one for the right reasons but the other 20% still worries me . so I decided to have a year out .THEN my sister offerd her eggs to me a couple of weeks ago, I knew this might be an option but we were leaving this as a last result which I guess really this will be it THE LAST GO! so now my head is all excieted for the want to go again NOW but I am going to wait till next march , I feel that I need to really think things through . I dont know if anyone else feels the same as me probably not I am just crazy you know me !!!! as part of the switching off period I was beginning to think of all the bad points of having children and not thinking of all the romantic wonderfullness of it all which has helped but the nice bits always win in my head which to me means that I still do want children . so the answere to your question no I dont have the same condition and I am sorry I cant help you on that but I can relate to it all coming alive again!!!!!
sorry did I wander off the subject a bit
guess I needed to get that off my chest and you coped for it !!!!!!Good luck for your next step when will treatment begin?
having a party today as it will be my 2000 post watch this space for the party to begin you are invited !!!!
Trace x
1st cycle own eggs Neg
2nd cycle own eggs Neg
3rd cycle cousins eggs Neg
4th cycle unknown donor eggs Neg
Going to have sisters eggs Feb 06
NEVER GIVE UP!
2nd cycle own eggs Neg
3rd cycle cousins eggs Neg
4th cycle unknown donor eggs Neg
Going to have sisters eggs Feb 06
NEVER GIVE UP!
Jaye,
I've missed you!
First, just want to say I'm sorry about the frostie. That must have been frustrating. Were you doing a medicated FET?
I am amazed your clinic actually found the problem...especially since it is such a rare thing! Does the condition affect the eggs or or implantation?
I think I would be feeling the same way. I'd be so happy and relieved that I actually finally knew what the problem was (especially so given that it can be treated) but, of course, terribly frustrated about having to start back at square one. How long do you need to take the increased folate for before starting treatment? Is doing IUI instead of of IVF a possibility again once the problem is corrected?
I think the next step for DH and I is additional testing which we declined at the beginning as well. There is a test called the SCSA which the Dr. had recommended he take prior to the IVF but she said it wasn't mandatory. Stupidly, we had opted not to at the time for a similar reason to yours. It would have taken several weeks to get the result and we didn't want to hold on starting the IVF. At the time, we also felt convinced that IVF would work for us and wanted to stay positive about it.
Anyway, it is on the early side here and I'm not fully awake yet so will say goodbye for the moment!
Staci
I've missed you!
First, just want to say I'm sorry about the frostie. That must have been frustrating. Were you doing a medicated FET?
I am amazed your clinic actually found the problem...especially since it is such a rare thing! Does the condition affect the eggs or or implantation?
I think I would be feeling the same way. I'd be so happy and relieved that I actually finally knew what the problem was (especially so given that it can be treated) but, of course, terribly frustrated about having to start back at square one. How long do you need to take the increased folate for before starting treatment? Is doing IUI instead of of IVF a possibility again once the problem is corrected?
I think the next step for DH and I is additional testing which we declined at the beginning as well. There is a test called the SCSA which the Dr. had recommended he take prior to the IVF but she said it wasn't mandatory. Stupidly, we had opted not to at the time for a similar reason to yours. It would have taken several weeks to get the result and we didn't want to hold on starting the IVF. At the time, we also felt convinced that IVF would work for us and wanted to stay positive about it.
Anyway, it is on the early side here and I'm not fully awake yet so will say goodbye for the moment!
Staci
Me 35/DH 41
TTC 4 years
Diagnosis: MF infertility
IVF/ICSI April 2004: -tive
FET Aug. 2004 (canceled due to cysts)
FET Jan 2005: -tive
FET Aug. 2005
TTC 4 years
Diagnosis: MF infertility
IVF/ICSI April 2004: -tive
FET Aug. 2004 (canceled due to cysts)
FET Jan 2005: -tive
FET Aug. 2005
Hi Jaye
I don't know if I should say I am sorry to hear your news, like you I always think the more they know the better it is and at the end of the day at least you know IVF can work for you! And now they know whats caused the M/cs they can hopefully sort out that side of things.
I know it doesn't help but 2 out of 3 positives are very good.
Just take a bit of time to decide what you want to do.
Love Wendy
I don't know if I should say I am sorry to hear your news, like you I always think the more they know the better it is and at the end of the day at least you know IVF can work for you! And now they know whats caused the M/cs they can hopefully sort out that side of things.
I know it doesn't help but 2 out of 3 positives are very good.
Just take a bit of time to decide what you want to do.
Love Wendy
TTC 7yrs, Me 35 (severe endo) DH 36
IVF nov06 8th time lucky BFP! - 1 baby boy
FET Aug o8 - BFN
[img]http://tickers.TickerFactory.com/ezt/d/2;51;28/st/20070804/n/Joe/dt/6/k/5ec9/age.png[/img]
IVF nov06 8th time lucky BFP! - 1 baby boy
FET Aug o8 - BFN
[img]http://tickers.TickerFactory.com/ezt/d/2;51;28/st/20070804/n/Joe/dt/6/k/5ec9/age.png[/img]
I just want to WOW, what a story. It really makes you think about things. Sorry about your frostie and I truely hope you come to a decision that will give you peace of mind and happiness. I'll say one thing for you, you have a lot of determination and I admire your strength. Traci, I hope your 'year out' will make your decision easier for you. xxxx
Hi Jaye
Just wanted to say I am pleased that you have a reason for your 2 m/c, I have had 3 low +ves that haven't made it so I share your frustration.
I had a follow up with my consultant this week and he said there are 2 things that affect the outcome of treatment one is the quality of the embryo the other is the 'environment' into which you transfer it. You cant do anything to improve the embryo but you can affect the environment.
It sounds as if you have a real chance now as your embryos are obviously good and they can treat you to help stop the m/c. I know it feels like you are starting over but you have so much more info now.
Good Luck if you decide to go again.
Just wanted to say I am pleased that you have a reason for your 2 m/c, I have had 3 low +ves that haven't made it so I share your frustration.
I had a follow up with my consultant this week and he said there are 2 things that affect the outcome of treatment one is the quality of the embryo the other is the 'environment' into which you transfer it. You cant do anything to improve the embryo but you can affect the environment.
It sounds as if you have a real chance now as your embryos are obviously good and they can treat you to help stop the m/c. I know it feels like you are starting over but you have so much more info now.
Good Luck if you decide to go again.
Ellie
Thanks everyone for putting up with my enormous post!
Traci, thanks for your thoughts. I've been through all of that too - am I really doing this to have a baby anymore, or just to win! But I'm coming more and more around to adopting if this doesn't work (went through a phase where I wasn't sure), so I think it must be because I really do want children in my family - however we end up getting them! But that's a whole other story... your sister's amazingly kind offer is wonderful to have, but I can understand your need to think it through. Personally, I'm terrible at waiting - I always race in as quickly as I can, but that's just me.
Staci, hi! the condition seems to affect the implanting, not the eggs. so it's IVF again, not IUI, I think. i'm a really poor responder, though, so it's not all plain sailing yet... but we have always got to tx, and 2 out of 3 times, got a (brief) +ve. So I guess there's hope. Are you going to have that other test?
Thanks Wendy, I know you've been through this too, so you know how it is, when there's no answer. At least there's a bit of an answer now, it is better than nothing.
Ellie, so sorry to hear you've been through this 3 times - is it worth trying for this test as well? I hear one m/c is really common, but 2 is really uncommon - 1 in 200 or so. 1 in 3 must be even more so. I don't know if it can help you - have they ever offered you any other answers?
Thanks to everyone for your thoughts,
Jaye
Traci, thanks for your thoughts. I've been through all of that too - am I really doing this to have a baby anymore, or just to win! But I'm coming more and more around to adopting if this doesn't work (went through a phase where I wasn't sure), so I think it must be because I really do want children in my family - however we end up getting them! But that's a whole other story... your sister's amazingly kind offer is wonderful to have, but I can understand your need to think it through. Personally, I'm terrible at waiting - I always race in as quickly as I can, but that's just me.
Staci, hi! the condition seems to affect the implanting, not the eggs. so it's IVF again, not IUI, I think. i'm a really poor responder, though, so it's not all plain sailing yet... but we have always got to tx, and 2 out of 3 times, got a (brief) +ve. So I guess there's hope. Are you going to have that other test?
Thanks Wendy, I know you've been through this too, so you know how it is, when there's no answer. At least there's a bit of an answer now, it is better than nothing.
Ellie, so sorry to hear you've been through this 3 times - is it worth trying for this test as well? I hear one m/c is really common, but 2 is really uncommon - 1 in 200 or so. 1 in 3 must be even more so. I don't know if it can help you - have they ever offered you any other answers?
Thanks to everyone for your thoughts,
Jaye
i am so thankful that you took the time to write your post..
it might help someone find there answers..
i am very glad that you know the whys... they are hard to leave with...
may we all get our miracales
becky
it might help someone find there answers..
i am very glad that you know the whys... they are hard to leave with...
may we all get our miracales
becky
we werent blessed with our babies to raise here but we our blessed with our grandaughter
and all of our many adopted and foster children that touch our lives
and i am glad to add that our 6th grandchild will be born this spring!!!!
and all of our many adopted and foster children that touch our lives
and i am glad to add that our 6th grandchild will be born this spring!!!!
Hi Jaye
My M/C's have been put down to the fact I have a high level of NK cells that basically destroy the foetus!
I have had a sucessful tmt and have twins so they did sort it out . I have IVIG infusions, steroids, heparin injections, yutopar, progesterone injections aspirin and next time(yes I am mad enough and greedy enough to have one more go) I will be having humira injections for 2 months before we start!! So masses of medication going on there!!!!
However it just goes to show if you give your little embies a chance miracles can happen. I am really hoping a miracle happens for you.
My M/C's have been put down to the fact I have a high level of NK cells that basically destroy the foetus!
I have had a sucessful tmt and have twins so they did sort it out . I have IVIG infusions, steroids, heparin injections, yutopar, progesterone injections aspirin and next time(yes I am mad enough and greedy enough to have one more go) I will be having humira injections for 2 months before we start!! So masses of medication going on there!!!!
However it just goes to show if you give your little embies a chance miracles can happen. I am really hoping a miracle happens for you.
Ellie
Hi Jaye - good to see you back. I'm sorry your little frosty didn't make it. There must have been a good reason.
It's great news that you finally have something to work with, and can hopefully go into your next cycle much more confidently (is that possible ..?)
Take care
Sandra x
It's great news that you finally have something to work with, and can hopefully go into your next cycle much more confidently (is that possible ..?)
Take care
Sandra x
Me 41 yrs old - dh 49 yrs old. ttc 110 yrs.
1st cycle (ICSI)....Mar 04 -ve.
2nd cycle (ICSI)....Aug 04 -ve.
3rd cycle FET........May 05 -ve.
4th cycle (ICSI) ... Feb 06 -ve
5th cycle FET ..... Feb/Mar 11
1st cycle (ICSI)....Mar 04 -ve.
2nd cycle (ICSI)....Aug 04 -ve.
3rd cycle FET........May 05 -ve.
4th cycle (ICSI) ... Feb 06 -ve
5th cycle FET ..... Feb/Mar 11
Jaye,
I'm not sure if you are still on the boards? I just searched for your message as I got a call from clinic today with the results from some additional bloodwork they did a few weeks ago. It turns out I have this same MTHFR gene mutation (so looks like I am a mutant too
). The nurse didn't want to go into things in detail over the phone as she said she didn't really know much about it so she had me set up a consultation with my Dr. next week. All she could tell me was that its treatable and I'll just need to take medication.
I was just wondering if you ever did anything further with this? Do you only take the medication during IVF procedures or do you take it all the time? I thought this was more an issue with miscarriage but, apparently, it can also cause prevent implantation which seems to be my issue.
I was also reading some stuff about having this making one more prone to having strokes?? Did you hear of anything like that?
Anyway, I'd better cut this short since I'm not even sure if you have been checking the posts lately!
Staci
I'm not sure if you are still on the boards? I just searched for your message as I got a call from clinic today with the results from some additional bloodwork they did a few weeks ago. It turns out I have this same MTHFR gene mutation (so looks like I am a mutant too
). The nurse didn't want to go into things in detail over the phone as she said she didn't really know much about it so she had me set up a consultation with my Dr. next week. All she could tell me was that its treatable and I'll just need to take medication. I was just wondering if you ever did anything further with this? Do you only take the medication during IVF procedures or do you take it all the time? I thought this was more an issue with miscarriage but, apparently, it can also cause prevent implantation which seems to be my issue.
I was also reading some stuff about having this making one more prone to having strokes?? Did you hear of anything like that?
Anyway, I'd better cut this short since I'm not even sure if you have been checking the posts lately!
Staci
Me 35/DH 41
TTC 4 years
Diagnosis: MF infertility
IVF/ICSI April 2004: -tive
FET Aug. 2004 (canceled due to cysts)
FET Jan 2005: -tive
FET Aug. 2005
TTC 4 years
Diagnosis: MF infertility
IVF/ICSI April 2004: -tive
FET Aug. 2004 (canceled due to cysts)
FET Jan 2005: -tive
FET Aug. 2005
Hi Staci
i was reading thorugh the thread and had no idea about this. i'm so sorry. at least it's treatable. i've found this on the web, probably you have already read it but here goes:
http://ghr.nlm.nih.gov/gene=mthfr
Hope Jaye will answer your questions. Meanwhile good luck with your tmt!
Rita
i was reading thorugh the thread and had no idea about this. i'm so sorry. at least it's treatable. i've found this on the web, probably you have already read it but here goes:
http://ghr.nlm.nih.gov/gene=mthfr
Hope Jaye will answer your questions. Meanwhile good luck with your tmt!
Rita
TTC 2y Me 31 Dh 34 NO SPERM - DI