And tested positive for two A1298C mutations, indicating MTHFR?
Alright, we all know how that one ends...
So, craaaaaap. I guess with my OPCOS diagnosis and now this I can officially say we are a train wreck Male and Female factor IF. I know this isn't the worst possible senario, but having gone two and a half years and six dIUI's believing that we only had the male factor issue, well, it sort of makes me want to crack some skulls.
MTHFR is not something that my old RE would have ever tested for. Because it falls under immunological disorders. And my old clinic didn't believe in immunological factors... Some RE's do, some don't. And it's not being partial to CSI: Las Vegas over Miami, it's like different religions.
I thought science was a little more... black and white.
How does one not believe in a gene mutation?
I don't understand.
And more than that, I don't quite understand what this means for me.
And my likelihood of a successful pregnancy.
I'm scared.
I probably sound like a complete moron, and believe me, I know enough to know that I can't even begin to comprehend the complexities behind this issue. I just wish that I didn't feel so caught in the middle...
An MTHFR success story might be nice to hear right about now.
I've started reading up on it, but I don't really know what to consider a legitimate source. Any recommendations?
25 comments:
Hi. I'm visiting early from ICWL.
I'm not from the IVF community but am familiar with MTHFR. Have you ever heard of Dr. Amy Yasko? She uses targeted supplementation with people who have gene mutations such as MTHFR, effectively getting the body to function as if it does not have the mutation. I have no idea if this might help with fertility issues but it might be something to look into.
Wishing you good luck and the fufillment of your dream.
Oh, Melissa, that's terrible! I'm so sorry about this! Sending you lots and lots of hugs... Also, I'm submitting this to LFCA to help direct ladies who know about MTHFR your direction.
And the hits just keep on coming... This really blows. I'm so sorry that you guys are only finding out about all this crap now. I hope that you're able to find some good answers soon.
Sienna has just gotten her bfp and she has mthfr http://timetomakeababy888.blogspot.com/
Im sorry to hear BUT Im so glad this has been diagnosed BEFORE your IVF. Imagine how pissed you would have been if it was only diagnosed AFTER?
Im thinking of u xxx
ER HELLO, UNIVERSE, how about giving my pal Melissa a friggin break? JEEZ. I'm really sorry about the crap diagnosis. Thinking of you lots.
I'm halfway helpful have one mutation of the other gene - C677T - for MTHFR and what they really cared about were my homocysteine levels. And since those were ok, the only thing they recommended was adding folgard and a baby aspirin to my daily regimen of prenatal vitamin. And I'm 21 weeks pregnant. This sucks, but is totally manageable now that you have been tested.
I have the MTHFR mutation. My doctor found it after two miscarriages. Her treatment was to take a baby aspirin every day as well as additional folic acid. I'm 29 weeks pregnant and everything is going well.
I'm so sorry Melissa, sometimes it just feels like one thing after another doesn't it? I have two friends who had MTHFR and both successfully carried a baby after having found out about it and being treated accordingly during the early weeks of their pregnancies. Hope that helps!
http://eileenburnsjin.blogspot.com/
Eileen from this blog had several losses but just had her twins after IVF and treatment for MTHFR.
Everytime I see "MTHFR" it just looks like motherfu**er to me. Seems appropriate. I'm sorry you have this but I really hope it helps you to be treated correctly. Good luck!!
Sorry to hear you've had another complicating factor thrown at you. But I really think knowing what to treat is key and at least with the female variety - they can actually give specilized treatment for this crap. Thinking of you!
I'm sorry about the new news, though the more information, the better, I guess. I can't believe there are clinics out there that don't believe in immunological issues! Very glad you have a new one. And hoping this is one more step towards a baby in your arms.
Well, crap. I hate that the bad news seems to just keep coming for you.
I hope the fact that they actually know what is going on means that you're closer to a successful outcome.
Oh, Melissa this just sounds like so much overwhelming news. Just when you might have been getting started to wrap your brain around OPCOS, now there is more with gene mutation. It is completely understandable that you feel scared and completely unsure what your future holds with the impact of these new factors. I'm sorry it is not getting any easier right now. Try as best as you can to take it one day at a time, love. And if that is too much, live one moment at a time.
Melissa I am sorry that you have been dealt yet another blow. I can only imagine how frustrating it must be for you to discover this after all this time and all those cycles.
I agree MTHFR looks just like motherfu**er to me too and I guess that's what this feels like to you. Howevere it seems you have had a few success stories sent your way, so fingers crossed we get to read your success story soon.
I'm another one who sees MTHFR as Motherfu**er. It sums up my feelings about it. I'm sorry you are getting so much piled up on you.
I have heterozygous (sp?) MTHFR which was discovered after 2 losses. I took baby aspirin and extra folic acid and I have a healthy 5 month old son now.
I'm sorry you keep getting this kind of news. I don't know anything about MTHFR, but I do knwo plenty of girls in the blogging community that also have this and are pregnant...so there is hope. I hope you find more info so that you feel fully informed.
Here from LFCA... I was recently diagnosed with compound heterozygous MTHFR after one miscarriage and insisting my RE do a complete panel on me. From what I've read, with only one MTHFR mutation being the A type, which it looks like you have, it's not too bad. Basically add baby aspirin and Folgard 2.2, a prescription which has additional folic acid and B6 and B12 vitamins. If you have compound heterozygous, or two mutations of the C type of MTHFR, then some doctors suggest some kind of blood thinner, like Lovenox, once you get pregnant, or even during a treatment. I just finished an IUI cycle using Lovenox. Granted it didn't work... so no success story yet, but I know there are lots of women out there that have had success with this kind of protocol. Hope this helps!
Ughhh, I'm so sorry Melissa. You just keep getting hit on all sides! =( I don't know a whole lot about MTHFR but I am glad you have some commenters who do. Hopefully you can get the right regimen to combat this issue. Sending you lots of strength!
Hi Melissa....I just read about you on Lost and Found...I have MTHFR one mutation but two copies and am currently 22wks prego....I take Lovenox twice a day, baby aspirin, and folbic tabs for it....Also I have PCOS....My husband and I have auto and allo immune issue which it seems that MTHFR is usually seen with immune issues....We had Four losses this past year and with three of them I was being treated for the MTHFR it was not until after our fourth loss that my OB suggested seeing a Reproductive Immuniologist so we did Dr. Kwak Kim in Chicago IL...and now with Immune tx and tx the clotting disorder/pcos we are now 22wks...You can check out my page for full detail or contact me with any questions you may have..http://lettheivfrollercoasterridebegin.blogspot.com/.Best of Luck Kristi
Hi Melissa..I'm also visiting from LFCA..I have MTHFR (and another person who always thinks of motherf**ker when I see it too)..I also have Factor V-Leiden and PAT-I..which we weren't dx'd w/until after we had 5 miscarriages..Oh, and PCOS. I had to take low dose aspirin and Glumetza while TTC and am now 21wks pregnant and taking Lovenox 1x daily..It can happen..and though these dx's suck, Im glad you find out now so it can be treated!!
I've just discovered your blog through ICLW. I'm really sorry to hear of your bad news, but some of the other commenters posts sound encouraging.
The "greyness" of science is REALLY frustrating, isn't it.
Good luck. x
Oh Melissa,
I'm so sorry to hear the news. It must be so frustrating to have only just discovered this.
I'm sorry I don't have a good source of information to recommend. Would it be possible to ask the doctor for it?
I can only imagine how tough this must be but in a way I'm relieved it was discovered before you start your cycle.
I was put on baby aspiring on both my cycles (reading the comments to your post, I wonder if this is one of the reasons why, rather than test)
Please, please let me know if there's ANYTHING I can do for you.
i was just diagnosed with MTHFR. i am homozygous for the c-mutation. were you homocysteine levels normal? mine were so my RE thinks that MTHFR is no big deal and not the root of our issues (unfortunately -- i was looking for answers). i'm taking folgard and baby aspirin. i've read so many stories about women who once treated for MTHFR go on to have a healthy pregnancy! fingers crossed!
What has a heart of gold, a kick ass sense of humor and super shiny gorgeous hair (that I keep meaning to ask what hair product you use)...YOU.
You are fantastic girl, and I know this diagnosis is a shocker, but I hope you don't let it define you.
'Cuz you...welll, you're just great.
XOXO
ps - sounds like a certain clinic is on both our sh** lists this week!
You're fine. You have the mild form of the mutation and it usually has no effect on fertility. As others have said, without a homocysteine and protein S level, the presence of the mutation is meaningless. You should get this done. Once you have the results you will know how to procede. If the levels are off you should probably be on lovenox after a positive pregnancy test, or after transfer on an IVF cycle. If they are normal you could take baby aspirin and extra folate anyway, it won't do any harm and might help. But this mutation does not explain your infertility, it generally has no effect.
(I am homozygous for C677T, had one dodgy protein S level so was on lovenox until 32 weeks in both my succesful pregnancies. Was also on lovenox in my unsuccessful ones. And C677T is the mutation which sometimes actually makes a difference in blood levels).
Just to make sure you have the science, a mutation need not have any impact on the functioning of the protein that the gene codes for (genes make RNA which makes protein, it's the protein which does the job). The mutation you hvae makes almost no difference to the functioning of the protein, the one I have somewhat more, but it varies from individual to individual.
So please don't freak out, this (i) probably has no effect on you, and (ii) is totally treatable if it does.
Btw have they tested for other blood clotting issues such as Factor V leiden? That is where more serious issues are usually found.
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