Mutha Fucka! Yeah, it looks like an acronym for a pretty nasty curse - hey, maybe it is!
My nurse emailed today. I'm positive for this gene mutation - whatever the hell it is - and I have to start taking massive doses of folic acid 2x/day and tomorrow I have to have a "fasting homocystine" blood check.
I think there's some debate as to whether this causes miscarriage or not but I believe there's consensus that this does block folic acid absorption and we all know how important that is to ward off birth defects, with spina bifida being a biggie.
Wish I'd known this months ago but I wasn't tested. Anyhoo, very grateful to know now. My next worry and, Lord, I hope it never pans out - but I worry that maybe I have scar tissue from the D&C (no evidence of this, mind you, just my usual neurosis!). And that would suck WAY worse than the MTHFR!
Anyone else have experience with MTHFR?
16 comments:
I have compound hetero MTHFR ... which strains do you have? I take 4.4mg of Folgard per day and I take 40iu of Lovenox during pregnancy.
I have also heard that yes this does contribute to miscarriage ... so it could apply in our case.
But still - like everything else in infertility ... they aren't "sure" about it.
But there's no harm in taking the folic acid and Lovenox - so I just cover all my bases.
Something else to consider is to do a GI test to see if you've got a gluten intolerance (not celiac's disease) ... that also is tied to miscarriages and nutritional deficiency.
I'm sorry you have the MO-FO ... but I'm glad you now at least know.
I have one of the two genes for MTHFR- I can't remember if that is homo or hetero- regardless, I am 23+ weeks pregnant, take 2 heparin shots a day, baby aspirin, and Folgard- so far so good- just bruised up love handles-lol-
Best of Luck!!!
First of all, you are the most thoroughly prepped IVF contestant I have ever heard of, and they never tested you for this? Although even as I type that I realize that I wasn't tested for my protein S deficiency until after my late miscarriage...
I take the extra folic and the blood thinners and low-dose aspirin, too. My hematologist ran every possible other clotting factor test after the repeat-loss panel just to be sure, but that was the only one for me.
I hate that you had to go through a loss to find this out - but I do hope it's an easy fix for you. So, so wishing you luck in the new year!
Yes me - I have the homogenous gene. We found it out after my first m/c. Thereafter I have been on 2.2 mg folic acid (Folgard) in addition to prenatals, and was told to be on Lovenox if I got a BFP. (RE said Lovenox was really not required, but it wouldn't hurt to be over cautious). Also baby aspirin everyday.
I believe my first m/c was because I stopped aspirin - baby's h/b stopped right around the same day I stopped the aspirin.
Good luck!!
Sky--
That's similar to the issue I had. I was on aspirin, heparin and prednisone for at least the first tri. Check out Dr. Beers http://www.repro-med.net/repro-med-site2/ and also check out that your docs will support a heparin/prednisone regimen.
Email me if you have more questions!!
My neighbor got pregnant on her first IVF almost 2 years ago with twin boys and lost them at 19 weeks- they never checked her for MTHFR. Then she got pregnant on her 2nd IVF about a year later...and that little boy was born this summer but has spina bifida, also a problem associated with lack of folic acid. After discovering the spina bifida at his 20 week u/s they tested her for MTHFR...and damn right, that is what it was. It is DEFINITELY something that can cause miscarriage and birth defects. I'm glad they found it before this transfer - I just wish they had found it sooner. This next cycle will work and with the added meds for MTHFR, you will have a baby soon! I'm so glad you are moving forward...Hugs.
Ah, the motherf*cker gene... yep, I have it and the 'worst' kind, too. I'm homozygous for the C677T gene.
I've posted about this, you might want to check my blog, but here's the deal in a nutshell:
- This is a highly controversial area of infertility issues.
- Docs are divided: some think any type of MTHFR and you should immediately go on Lovenox; others think Lovenox is only necessary if your homocysteine level is elevated.
- My doc is in the latter camp (as was ol' Schooly at CCRM) and said that because my H level was well within normal, I did not need Lovenox.
Lovenox is not the 'harmless' drug that many women in the MTHFR world think it is. It can cause bleeding and that is not good in a pregnancy. Personally, I tend to agree that it's only needed if H level is elevated.
Some think it causes miscarriages because it causes clotting; others think that because your body cannot process folic acid correctly, it causes serious developmental issues (neural tube defects, spina bifida, etc.) that cause early term loss. I think both things are very likely.
If you are going to take folic acid, it’s very important that you take a brand that your body can process. Many women with MTHFR take 4, 5, 6mg of folic acid a day, not knowing that they are flushing most of it down the drain. If you have MTHFR, your body cannot process folic acid. There is only one brand that I know of that is pre-metabolized so that your body can actually absorb it. Made by Metagenics, it’s called FolaPro (no, I don’t own stock or have anything to do with them other than that I’m a customer.) This is the brand I take and I take two a day, one in my prenatal (1mg) and one additional (800mcg.) I have been told this is plenty.
You may or may not want to consider going on 1 baby aspirin a day. This will help keep your blood ‘thin’, but many docs do not think it is necessary. Check with CCRM and your ob/gyn and see what they think.
My personal opinion on this is that the docs that prescribe Lovenox are doing it mostly as a CYA method. If a patient has bleeding issues while on Lovenox (and many do), they simply stop it and ‘no harm done.’ I’m not convinced of that, however, and my ob seemed concerned enough about not putting me on it that I went with that. My impression, though, is that many women who have this are scared into thinking that they absolutely need Lovenox and so they go on it. I’m a ‘less meds the better’ person, so I’m not easily swayed in that camp.
I am somewhat surprised (and mad!!) that CCRM didn’t test you for this after your first loss. But many docs don’t think of testing for it until there are several losses. I think it’s really hard to say at this point what the effects of MTHFR are. There have not been enough studies because it’s fairly new and hasn’t been investigated much. I think possible the biggest thing is that your body does not process folic acid well - and we know that is crucial for a healthy pregnancy.
Keep this in mind as you’re deciding what you want to do:
If I am homozygous, my mother (and my father) have this gene issue. My mother had EIGHT healthy children without ever being on baby aspirin, Lovenox or taking folic acid.
I have two sisters, both of them had absolutely no trouble conceiving and carrying to full term. They also surely have the gene as well.
There are many other stories like this. My ob said that this is why it is so controversial. For all the women that have MTHFR and go on Lovenox, etc., there seem to be just as many that have it and have no problem conceiving/carrying to term. It’s possible there is another factor that hasn’t been determined yet.
The good news is that now you know, and you make some decisions as to what you want to do. Most women I know who do some sort of treatment go on to have healthy babies. I hope that will be the case for you as well!!!
Also, MTHFR is very common. Many, many people have it and have absolutely no idea they do. They usually aren't tested for it until some sort of health issue crops up (blood clotting, etc.) So don't feel like you're some kind of freak now.
And another thing: you might want to investigate some immune testing like Factor Leiden, etc., that are associated with clotting (sorry, don't know all the names of the tests.) From what I've read, it seems that women who have other clotting/immune issues, ARE in fact much more susceptible to clotting issues and may in fact actually need to go on Lovenox. My layperson's theory here is that these are the only women that really need Lovenox, but I'm not a doc. But you might want to check it out.
I have a single copy... My first RE didn't test for it, SIRM did thank God. It depends on if you have one copy or two... One copy like me? Folgard and a baby aspirin up until 35 weeks. I think the dual copy is a little more in-depth with regards to meds, and you are at a higher risk of strokes. GOOD LUCK! I'm glad they finally caught it.
I have no assvice about MTHFR. I'll just chime in from Polly's suggestion about gluten intolerance. If you do have it, like I do, you definitely don't absorb nutrients as well, hence the reason for large doses of folic acid. I've got the osteopenia to prove it (lack of calcium absorption). I take a B12/folic acid supplement. You need the B12 to absorb the folic acid, I believe. I'm sure you'll be doing lots of research on this and will be educating all of us on it soon! Looking forward to it.
I'm glad you found this out. I have never been tested for it and it is because I have never had a m/c (or pregnancy, duh). But I always wondered, why wait?? Geez.
Hang in there!
Wow. Another highly controversial diagnosis. (BTW, I always thought that the acronym meant "mother f**ker" too!) On the one hand, it's kind of nice that they can finally put a label on it and you can do something about it but the "doing something about it" seems controversial as well. Sigh. Nothing is easy is it? Hopefully if this is the issue, the Lovenox etc. will take care of it.
I have been DX with MTHFR - 2 copies. I'm currently in my 2nd IVF cycle & after transfer, I will be on 2 shots of heparin/day. However, I will stop baby aspirin (I think due to the chance of excessive bleeding). Another blogger reached out to me - she has thrombophilia & is pregnant with her 2nd IVF baby. :) You may want to contact her! http://nearlydawn.blogspot.com/
Hope you find the answers right for your situation .. and good luck with your cycle!!! :)
It seems there is always something. I hope it is completely treatable and all goes well with the next transfer.
I don't have any useful info... I'm glad you know you have this for the future, but so sorry you had to find out at all.
Just one more thing, eh? Hopefully this knowledge will help you in the future - I am kind of freaking out now wondering if I have it too! How many m/c do I need to have before they test? So frustrated with my clinic right now. Hope you get the mo-fo under control!
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