Valentines 2015

Valentines 2015

Friday, January 21, 2011

The importance of being your own advocate

I am mad at myself today. I became really good at being my own advocate during our struggles with infertility and I pushed urged others to do the same. So why is it that after I have had a successful pregnancy I seem to have lost the tenacity to stand up for what I believe to be the right choice/decision/treatment for me?

I have no idea.

Here's what happened (with a bit of a backstory so you fully understand).

I was diagnosed with compound heterozygous MTHFR gene mutation in December of 2009 after my second miscarriage. My RE had flat out refused to run any testing on me prior to my next IVF even though we had already paid her well over $10K for failed fertility procedures in our quest to conceive, so I requested that my OB run the recurrent miscarriage/habitual aborter blood testing. He agreed. What came back was that I was compound heterozygous for the MTHFR gene mutation - having one copy of the C677T and one copy of the A1298C genes. To oversimplify a bit, MTHFR is as clotting disorder that also inhibits your body from being able to properly metabolize folic acid. This is a huge deal during pregnancy (obviously), but it is also something you need to be mindful of for the rest of your life as it increases your risk of cardiovascular disease, stroke, blood clots, and a whole host of other problems.

Anyway, I was taking a prenatal vitamin called Neevo while I was pregnant that contained a metabolized form of folic acid that was readily available to be used by my body. I felt great while taking it. I was also taking baby aspirin - one a day - during my pregnancy. I still had some Neevo at home and I had continued to take it along with my baby aspirin after my girls were born. I ran out of Neevo two weeks ago. I quickly became exhausted lethargic. I thought maybe it was because I had twin babies at home and I was now working. But I hadn't felt this way before, work wasn't high stress or physically demanding, and the girls were sleeping more now than ever. I thought maybe it was because I wasn't exercising enough. But when I would exercise do something as simple as climb stairs at work I would get so tired, and so almost lightheaded that I would have to stop after 5 or 6 flights.

Then I thought about what had changed. I had run out of prenatals and had switched to a different brand that didn't have them metabolized form of folic acid that the Neevo did. So I requested more Neevo from the pharmacy. The pharmacy contacted my OB's office, who DENIED the request. Really? Denied? It's a prenatal vitamin, not a controlled substance for Pete's sake! No worries I thought. I had seen my OB multiple times since the girls had been born because my body just wouldn't stop bleeding after my C-section. I ended up having not 1, but 2 D&C's post partum, the last one being on New Year's Eve day and being ultrasound guided to make sure that my OB "got it" - a necrotized piece of something (not placenta, and not cancerous) that had literally grown into the wall of my uterus and was refusing to come out with "simple scraping". I had my post D&C follow up visit (from D&C #2) with my OB yesterday. I figured I would talk to him about the Neevo, it would be no big deal, he would refill it, and I would go on my happy way.

This is what happened instead:

Me: "What should I be doing in terms of supplementation of folic acid or taking prenatals now that I'm not pregnant?"

OB: "Nothing. There is no need for you to supplement anything."

Um, okay. That wasn't in my plan. So I reminded my OB that I was compound heterozygous for MTHFR and I asked him what I should be doing in terms of supplementation of folic acid and the other B vitamins as my body still can't metabolize folic acid, so I know I still need to do something.

Me: "But I have the MTHFR gene mutation - I thought I needed extra folic acid at the very least - regardless of if I am pregnant or not".

OB: "No, there is no reason for you to take any folic acid at this point".

Me: "Really? I thought I had to always be on folic acid, and I really liked the Neevo that I was on while I was pregnant. Could I get more of that?"

OB: "No, there is no need for you to be on that"

Okay, so lets add another layer to this story. Si and I have made the decision not to prevent future pregnancies at this time (mostly because I am breastfeeding and I don't want the hormones to mess with my milk supply), so there is a very very slight possibility that I COULD get pregnant on my own. You know, the way a one tubed, stage IV endometriosis, infertility and recurrent loss patient could. . .I think my quoted chances of getting pregnant on my own - less than 2%. Yeah, I'm really not concerned. And if it did happen, we would definitely consider it a miracle and a sign from God that we were obviously supposed to have another child. But that's not the point.

I figured at this point he would say oh yeah, since there is a possibility you could get pregnant you should stay on a prenatal. Instead, this is how the conversation went. . .

Me: "You know, we aren't going on any sort of birth control, so I suppose there is a very slight possibility that I could get pregnant. . ."

OB: "Oh it could definitely happen. I've seen it happen many times before"

Me: Blank stare. . .

OB: "After you get pregnant next time we will start you on a prenatal again. There's just no need for you to be on one, or anything else, right now."

Me: Blank stare. . .

OB: "You do need to make sure you are taking your baby aspirin every day though. And any time you fly you need to take an entire aspirin to try to prevent clots."

Me: "Okay, I get that. I've been so tired though lately, and I suspect it's because I no longer am taking my prenatal"

OB: "You are probably tired because you have twin babies at home and have had 3 surgeries in 12 weeks. You should be tired."

Me: Again - blank stare. . .

I mean, what do you say to that? I have never had 3 surgeries in 12 weeks before, so I guess I don't know how tired I should be after that. But don't you suppose that if this was just a "normal" tired for me that I wouldn't bring it up? I mean of course I'm tired! I have twin babies that keep me running 24-7! But I'm used to that. And it's WAY better than it used to be. But I'm more tired now than ever. And I did try supplementing iron again (on top of the OTC prenatal) in case I was anemic. . .no change. =(.

Okay, so let me review and tie this all up in a pretty little bow for everyone, except my OB. My body CAN NOT fully metabolize folic acid. Folic acid is 100% absolutely necessary AT THE TIME OF CONCEPTION. As I am not on birth control right now, conception could potentially (although definitely not likely) happen ANY TIME. If my body can't fully metabolize the folic acid that I am taking in from food, and I am not supplementing, there is no way that there is going to be enough folic acid readily available in my system to prevent neural tube defects in a baby if I did get pregnant (in which case I would probably ultimately end up miscarrying). The very simple solution? A prenatal! Preferably one that has the metabolized form of folic acid I need. Is anyone having difficulty following me, or is it just my OB???

Besides, isn't it standard procedure now to put women of child bearing age on a a prenantal REGARDLESS of whether or not they are trying to have children, just "in case" they do get pregnant??? It thought that was the new standard reccomendation. I know I was on a prenatal the entire time we were TTC/not preventing. . .so for 6 years before I was actually pregnant. And he had no problem writing the script then.

I am so confused. And now I have to figure out what my next step is. I was taking the metabolized form of folic acid, which is what I need to make the folic acid readily available to my cells. And of course, it isn't available without a prescription. Sigh. Now what? My PCP maybe? I am so mad at myself for not pushing this more with my OB yesterday. I really do love my OB, and I normally trust him fully. Which is why this is such a shock to me. Now I don't have another appointment with him for 3 months when I go in for my "annual exam". . . .

I know that many of you aren't in the same shoes, and may have no idea what MTHFR is, but do you have any thoughts on what you would do in this situation? I guess I just don't understand what the big deal is to give me the prenatal, so I'm lost at what to do next, or who should be next on my contact list. I'm most definitely not going to do nothing. . .

Ugh! TGIF!


  1. I would go in to your regular general practitioner and ask for it. In my experience, those people will hand out pills like they're candy. Especially since you've had it before. Good luck, I can tell you're beyond frustrated.

  2. First of all, according to my OB you should continue taking the prenatals while you are breast feeding.

    Second of all, I'd call the OB and say, "I want to continue to take this prescription. I feel better on it and this is a decision I have made. Will you support me?"

    If its no, then go to the PCP.

    Don't beat yourself up. You ARE tired and you were taken off guard. You can do this.

  3. You should be on prenatals while breast feeding!
    I just had two back to back surgeries and it is exhausting so I'm sure that's part of it but you should be taking a prenatal.

    Oh and I was given less than 3% that all three embies would take:)

  4. Stephanie - good call! My PCP probably would give it to me. I'd have to explain to him why I had to have that certain one though - think he'd get it?
    Sheila and MJ - That's what I thought too! As long as you are breastfeeding you should be on a prenatal. I started on an OTC prenatal when I ran out of the Neevo so I was taking something, but for him to tell me that I didn't need anything at all was just crazy to me. Not at all what I expected.
    MJ - hope you are recovering well after your surgeries=). LOL@ less than 3%! Look at the beauty you have to show for it! Your trips are BEAUTIFUL! Such a gift =).
    So I actually have a friend that called in the script for the Neevo for me. She couldn't understand why they wouldn't refill it at the OB's office either!
    Hope you ladies are having a great weekend!

  5. MTHFR - Ok, it could be just me...and you know me! But when I see MTHFR my immediate translation is (excuse the expletive) Mother Fucker! Right? I mean really...I think it fits and through this whooooole process you've been through I'm sure those choice words have crossed your mind. Hehe :) But alas it is all worth it AND MORE in the end! Love Love Love those darling girls of yours!!! xoxo~B

  6. Hi Megan, thanks for your blog..I have the same Gene Mutations as you, Compound Heterozygous for C677T & A1298C. I just bought a supplement by Thorne Research on Amazon called (5-MTFH), it's got amazing reviews and suppose to help our condition.

    I just had a miscarriage on 12/29 and had to go through 2 D&Cs. Since I conceived through IVF I insisted on the tests and exams. I'm now giving my body some time to recover before our next transfer. Fingers crossed..I think being passed 30s it's slightly harder to conceive naturally for me. Wish me luck!

  7. Ooh Tahirah that's awesome that you found that supplement! I'm so glad that they are finally starting to make metabolized forms of the folic acid that we can actually use. It means science is catching up!! YAY!
    So sorry to hear about your m/c. I'm glad that you had the testing done. I hope that will help prevent any future heartache. Tons of good luck and sticky vibes your way for your next transfer!! Please keep me updated =)

  8. Geeze, I got a little extra tired just reading about your ordeal!!! <> I hope you get the supplement you need and start to feel better soon.

  9. Hi! I'm just curious how this is going for you. Have you continued taking vitamins, or when you stopped did you notice a permanent lack of energy? I'd love to hear more. Thanks:)

    1. Hey there! I have been on and off of the Neevo several times over the last three years and every time I go off, whether it's for a week or several months I can absolutely tell a significant difference. I just refilled my Neevo prescription last week after being off for nearly a month and WOW....every time I am reminded that I am going to need to be on Neevo (or equivalent) for the rest of my life. No doubt about it. The negative, of course, is the cost. At this time my insurance is still paying for part of it, presumably because I am still nursing my youngest. Even with them paying part it still runs me $52 a month. It's worth it though!!! I would encourage you to try it. You may feel a difference within the first couple of days or you might not. I think for me, it took me being on it for a while, then being off of it to really tell a difference. I'd be interested to get your feedback after you try it!


Thanks for sharing your thoughts with me!