my drug habit…

I went in for my last (hopefully) blood test for a while.  It was to check my homocystine (?) levels, which is realated to the MTHFR.  I’m not sure what will happen if it comes back that I have that, too…more meds?  Don’t know.  Anyway I’m really hoping that we’re now at the point where I can get pregnant and sustain it all the way through.  Sadly it’s taken 3 doctors, 3+ years and 2 lost babies to figure this all out.  I’ve learned that I need to be more proactive about my own diagnosis and fight for the things that I want.

When I first went in to see Dr. Freakin’ Awesome (the MFM doc) I was asking him all kinds of questions about baby aspirin and lovenox, since I know so many of you ladies have been put on one or both of those.  At that point (rightly so) he didn’t think it was necessary, since we hadn’t run the blood work yet.  I was kind of just feeling out what might be used for some treatment.  Now with the MTHFR diagnosis he has put me on baby aspirin, plus the extra folic acid.  I’ve been doing a lot of “research” (by that I mean, Dr. Google has been consulted on this), and have found that most women diagnosed with MTHFR are then put on the baby aspirin, extra folic acid (on top of a prenatal) and then when they become pregnant are prescribed lovenox or heparin.  I’ve found this article, that I have now printed off to put in my files.  If (when…) I get pregnant I will be using it to convince whatever doctor I have at the time to put me on one of the two of those.  I hate needles – really hate them, but whatever it takes ya know, as I’m sure you all understand.  I also stumbled across a blog called The Expecting Father – MTHFR gene mutation and pregnancy.  It’s written by a man who’s wife had recurrent miscarriage (2) and then was found to have the MTHFR gene mutation.  When she became pregnant again she was given lovenox and delivered a healthy baby boy.  They have since had another baby boy just a few weeks ago with the same treatments.  I also know my dear blog friend K of Waiting for Sunflower has used the same treatment and her little guy should be coming in the next few weeks!!  You can be sure I’ll be very proactive about getting this same treatment for myself.

In other news, I’ve scheduled a consultation appointment with a new ob/gyn (for May 24th).  I found her by searching online (I know, kinda scary) – but she was reviewed on Yelp! and all of the reviews were 5 stars!  She is covered by my insurance as well.  I’m hoping to go in to the meeting with all of my medical records and just be very straight with her what I want.  I’m hoping she has some experience/knowledge of infertility issues, specifically PCOS and now MTHFR.  She sounds like a great doctor, but if she can’t meet my needs, I’ll be looking for someone else.  I’ll let you know how it goes.

Okay, now on to the actual reason for this post!  I wanted to do a show and tell of my new drug habit (sorry this beginning part kinda got away from me).  First off, I’ve turned into an old lady – yup, I bought a pill box.  I figured though if I need a pill box to keep track of everything, it may as well be a “hip” pill box, so this is what I got:

It’s individual canisters that screw together to make this stack.  There’s an extra lid so if you’re going on vacation, you can just take the days you’ll need.  It’s pretty fun, and allows me to see if I’d remembered to take my pills for the day.  I just put my morning dose in the jars.  I have an alarm set on my phone to go off to remember to take my Metformin at lunch and bed time.

Here’s a shot of the bottles of pills:

The big jar is the pre-natals (some generic brand my insurance company picked out…).  The next generic looking jar is my Metformin.  The yellow is the extra Folic Acid (I’m supposed to take 1 mg a day, but they only came in doses of 400 mcg, so I take 3 of those) and the smallest jar is the “baby” aspirin, which isn’t for baby’s at all, they just call it that.  Though it is chewable and orange flavored!

So the grand total for the day is 8 pills: 6 in the morning and then then other 2 through out the day.  Here they all are!

Nice, huh?  The prenatal is a very vibrant pink.  There is even a warning on the bottle that it may turn your pee colors for a while…yeah, really.  Luckily I didn’t get that side effect!  I don’t know why they had to make it so pink!

That’s my update for now.  Hopefully my results will come back soon and I know for sure the full treatment for me, and hopefully, it’ll work!  Oh…and btw, I’m on CD-21, and no sign of ovulation.  My temps have been all over the place throughout this whole cycle.  I forgot to do my OPK this morning.  Might do it tonight and see what happens…

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Okay…so, I was just getting ready to hit PUBLISH and my phone rang.  It was Dr. Freakin’ Awesome’s office and my blood work came back normal!  Yay!  So I just stick with the above until it works!

more info on my mthfr…

Okay, got the test results in “writing” back from the doctor.  Here’s what it says:

“This individual [yours truley] is homozygous [I have 2 copies of the mutation] for the C677t mutation and neagative (normal) for the A1298C mutation in the MTHFR gene.”

So the fix is to add 81 mg of Baby Aspirin (the chewable kind, yay) and 1 mg of Folic Acid to my already growing drug regimen.   Like I said in the last post though, anything to get my baby!!

I’m also being sent in for one more blood test, Homocysteine Level.  Basically to see if I have B12 or folate deficiency.

I’m happy with this result, because it seems fixable, but 2 things kind of scare me about it:

1) Apparently the MTHFR gene mutation can tie in to vascular disease.  I’m now in 3 high risk groups for a heart problem (women, obese and MTHFR gene mutation).  Great.

2) I’m absolutely TERRIFIED of blood clots.  Seriously, I’m constantly worried when I’m in a car for too long I’m gonna get a clot.  My grandpa and aunt both in the past year have had blood clot issues and it scarred the tar out of me.

Anyway, that’s what’s going on in my life.  One fun thing with my blood work, a copy of all my genes was in the envelope!  Now I have pictures of my DNA…it’s pretty interesting!

Oh, forgot to add this…an interesting article I found on MTHFR and Miscarriage.

dr. freakin’ awesome & answers…

Have I mentioned how much I love my MFM doctor?  I really do!  He’s been amazing to me…I’ve only seen him once, but when I have questions or tests come back HE calls me personally!  Can you imagine that??  A DOCTOR that makes phone calls with test results???

Therefore I dub thee: Dr. Freakin’ Awesome!  From now on, that shall be how I refer to the MFM doc.  I wish I could have him for all of my ob/gyn, infertility, MFM related appointments…

Anyway, he called me this morning on my way to work (DH was driving luckily so I could take the call).  My über blood work came back (really quickly too, as I though it’d be late next week before I heard anything).  He said everything came back normal except the MTHFR – basically it means that my body doesn’t hold on to folic acid (which is a tiny bit important when trying to create and sustain a life…).  It also can cause clotting problems that can lead to miscarriage.  He thinks however (and he told me this when I met him the first time) that my 2 losses had just been bad luck and it didn’t seem there was anything particular that led to the losses.

He’s going to send me in for one more test…some sort of enzyme.  I don’t recall the name (I’ll tell you when I get my requisition form).  He’s also giving me copies of ALL of my test results, in case I ever move or get a new doctor so I don’t have to repeat the tests!  Did I mention how freakin’ awesome Dr. Freakin’ Awesome is??  Cause, well…he is!  My DH is heading down there after lunch to get my results and the blood work order form.

So…what is the next step?  I will be adding a folic acid supplement to my daily Metformin and Prenatal.  Also I will start taking 1 baby aspirin a day.  So that’s a total of 6 pills a day!  Oh well…if it gets me my baby in the end it is absolutely worth it!!!

Can I just tell you all how happy I am right now???  It sucks that there is so much wrong with me, and that it’s been a constant battle with my body and doctors these past 3 yrs, 3 mo – but now there is a better answer, and a way to deal with it that just may work.  Now with the combo of my Metformin (so I am FINALLY able to ovulate on my own) and the Folic Acid/baby aspirin (to keep my baby once s/he is concieved), this just may work out!!  A huge swell of hope has hit me again, and it was MUCH needed!!

I emailed my best friend yesterday because I’ve been having such a hard time the past month with all of this.  Baby announcements, births, preggo bellies everywhere and nothing for me but empty arms where my 2 little ones should be.  It hit me hard yesterday…if you’re on twitter, you probably saw my Infertility Pity Party tweets all day…it was a rough one.  But, now today!  I have hope again, something which is desperately needed.  This just might work…