We actually have a diagnosis! Just got off the phone with the clinic, and although I don’t have an appointment for another two weeks with the doctor, the nurse called me to let me know the results of the tests. Although all of the tests aren’t in yet, they wanted to let me know that I have two mutations of the MTHFR gene – I think this means I’m homozygous. I’m not completely sure what all this means, but they want me on a high level of folic acid – prescription strength – in addition to baby aspirin and my regular prenatal vitamins. I’ve been taking the aspirin since the beginning of this cycle, just in case, but now I’m going to add the folic acid, as soon as my pharmacy gets it – they didn’t have any in stock, so they’ll get it tomorrow. I told the nurse that we’ve been trying naturally, and she seemed a little concerned, adding that I should start taking the additional folic acid right away. Scary. Has anyone out there had this problem, or know somebody that has? I seem to remember a couple people mentioning it – need to start doing some research…
I’m a little nervous about what I’ll find, but honestly, I’m happy there’s something wrong – and it sounds like it’s treatable. Finally – something wrong!!!
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So glad that you finally have a diagnosis!! This unexplained stuff is total crap. I know little about MTHFR but I know that it is not uncommon in the IF world so I am sure you will get tons of good info sent your way. At least now you know they will be treating you correctly.
ReplyDeleteThat's wonderful news, Alex!!! Something fixable!!! YAY!!!
ReplyDeleteWhen I started ttc'ing after MTX, my OB told me to take lots of extra folic acid. She said you can't overdose, so I took an extra 1600 mcg, in addition to the 800 mcg that is in my regular prenatal vit, for my entire first trimester. I also took the baby aspirin, but I have stopped now.
So I say just take extra OTC folic acid until the prescription stuff comes in. I wish I could give you my leftovers (the drawback to internet friends-- they aren't right next door!).
Seriously, this is wonderful news.
Sorry there's something wrong but I'm so glad they found it and that it's treatable!! I think the MTHFR mutation is fairly common as far as gene mutations go so I'm sure you'll find lots of info - just try not to scare yourself.... : )
ReplyDeleteYay for something that should be fixable!!! A diagnosis is an awesome thing!!
ReplyDeleteAnd, folic acid is a water soluble vitamin, so anything your body doesn't use it will excrete. So, I think increasing the amount you're using with over the counter stuff for right now is good.
Glad you got the results. Hopefully the change is medication will do the trick!!
ReplyDeleteAlex! It sounds strange to say I was hoping that you find something. It matters whether you are the CT or AC. I'm AC which is a bit less serious. I was taking the prescription strength, but realized that I can take OTC of 1k for a total of four a day for less money.
ReplyDeleteI feel strange congratulating you on a diagnosis...but YIPPEEE! I hope your medication regimen does the trick.
ReplyDeleteI have the MTHFR mutation, and take FABB tablets twice a daily for my extra folic acid and other b vitamins. It also means that I go on Heparin or Lovenox in the latter half of my IVF cycles and up until 12 weeks of pregnancy. Other than that, not a big deal. :)
ReplyDeletehey babe - a bunch of us have mthfr. i'm homozygous for C677T (the bad one). if you're homo for 2 copies of the A-mutation, then that's not a big deal. in order of worst to best, is homo c677t, hetero c677t and A, and then homo A.
ReplyDeletei take folgard (extra folic acid, b6 and b12). i went around town BEGGING for lovenox (blood thinners), but MFM's and hemotologists won't give this to you unless you've had 4-5 miscarriages. even in that case, all 4 second-opinions said they would still not give it to me, bc there's no CONFIRMED link between mthfr and miscarriage. i beg to differ. they all seem to think the folgard is enough bc my fasting homocysteine numbers are low. ask what yours is. if it's high, you should prolly also be on blood thinners. if not, just folgard and baby aspirin.
This is so amazing Alex, FINALLY!! I am so happy for you because it means you know what to do to hopefully prevent any issues now. I don't know much about it myself, though, so sorry I can't offer much advice there!
ReplyDeleteblood thinners during pregnancy and plenty of folic acid should help keep you pregnant. Not an easy road, but at least fixable. And check out if this diagnosis will mean that insurance can now pay for the treatment!
ReplyDeleteAnother question I would ask is how would my child be affected when they want to reproduce?
Yeah for some answers!
Bee
I'm compound hetero (one of each copy C and A). I do folgard, baby aspirin, and am now on Lovenox. I've m/ced three times. The only time I was able to hold a pregnancy was when I was on Lovenox. Now I am pg again and will be on Lovenox until at least week 12.
ReplyDeleteI also have boderline Protein S deficiency. The Lovenox takes care of that too.
Oh, I take 5000 mcgs of folic acid (2 folgard with the prenatal) with the B vitamins. Your body disposes what it doesn't ues. Better safe than sorry with the folic acid--that is what leads to healthy neuro development and prevents birth defects in pregnancy.
ReplyDeleteI'm so glad that you're feeling great about the news! I agree with Sienna...ask about your homocysteine levels.
ReplyDeleteI'm also homozygous for the C (as Sienna pointed out, the bad one). I'm on baby aspirin and Folgard, and Lovenox during pregnancy (but only because of multiple losses...in many cases they don't prescribe the Lovenox, and a lot of docs view it as overkill). The jury is still out on how much it does or does not affect things...and you'll hear wildly varying opinions on it. But the Folic Acid thing is for real (we metabolize it poorly, which places us at an increased risk for things like neural tube defects). Also, because we have a problem metabolizing FA, our homocysteine level can shoot up. This, in turn, can lead to a lot of problems including heart disease. Did they test your homocysteine? You may want to, just so that you can have a baseline.
ReplyDeleteThis is great news that they found something and it's fixable. I think unexplained infertility and miscarriages would have to be the WORST diagnosis ever. I am now more pumped up to get my results back in the next week or two. I am determined that they won't find anything and i'll be right where i started, but you have given me hope! Keep us posted on what else you learn and of course, your TWW!
ReplyDeleteI have MTHFR two copies one of which is the worst one to have and the other in combination is not so good....I also have Factor 13....They have me on a daily baby aspirin....folbic tab...and also always took 30mg of Lovenox the month I started trying...and with our latest cycle because I have poor blood flow to my uterus because of the clotting disorders...they put me on a higher dose of 30mg in am and 30mg in pm....then increased it again but to 60mg in am and 30mg in pm when my blood flow still was not correct....and now it is good:) Thats one of things Dr.Kwak monitors is my Lovenox and blood flow to my uterus...and she adjust my Lovenox according to the flow sometimes decreases it and sometimes increases it....I am going on a weekly basis in first trimester and will go every two weeks second trimester unless there are issues then more often...but it is def treatable:)
ReplyDeleteI am not sure what it all means but at least it's something you can help fixing... I know it's hard to see it this way but at least you are getting answers and they are giving you supplements and drugs to fix this! Science rocks!
ReplyDeleteMake sure that with the high strength folic acid you take vitamin B complex too! it's brilliant when there is an answer to our problems. You are definitely on the right path! Love, Fran
ReplyDeleteHooray for answers! Hoping that this will do the trick.
ReplyDeleteHugs,
Jo
Even though I'm not glad there is something wrong, I'm happy that it's something that's treatable and that you have answers. Not having answers would be far worse. I hope the suggested treatment does the trick.
ReplyDeleteHooray for information and a fixable problem. Happy to hear you have some answers!
ReplyDeleteA diagnosis for something fixable! That's great news, Alex :-).
ReplyDeleteIt's so funny how happy you can be at finding a problem, isn't it? After my Starbaby died, I was terrified that there would be no concrete reason for it. When we found out how sick he was, and that he never would have lived even if he was born alive...well I have to tell you it was a RELIEF!
ReplyDeleteSo YAY for the diagnosis! I actually know a LOT of women with the same diagnosis, one in particular I am friends with is now 23 weeks pregnant with a healthy baby after many miscarriages :) So I hope like mad that you conceive quickly and can hold onto the pregnancy :)