Thursday, March 5, 2009

GUESS. WHAT.

So apparently all the signs that I was meant to get the testing for blood clotting disorders were for a reason.

I received a call today from my Dr, and finally all of the results came back. She was only waiting for one to come back for this long (all the others had come back already, megative). But the one that took the longest, until today, was the MTHFR test. And? It came back with TWO mutations. I have MTHFR.

Oh. My. God.

I can't even tell you how I felt after that phone call. It will sound insane, but you would have thought someone told me I won the lottery. Or, maybe a better analogy would be that I was one of 5 people who won the lottery (so, I don't receive the entire grand prize, but I do win something). I don't know why this is, exactly, but part of me thinks that maybe I CAN get pregnant- - and maybe fixing this problem is all I need now to make this dream come true.

Of course, then there's the added reality of... have I been pregnant before? Was my false positive from hCG last January REALLY a false positive, or were all my early pregnancy symptoms real? Was that our baby? Do we have a soul in heaven that we don't even know about, and haven't been talking to and praying to? I wish I knew for sure. But I never will.

I do wish I had kept taking the baby aspirin that I started taking last post-Peak phase, just as a pre-caution. But I didn't know how it would affect me if I didn't have the disorder. I'm on CD 11 today, though, so it should still be early enough to help this cycle... at least, I hope so. I was also advised to increase my folic acid intake, and will now take 3 mgs per day.

I am supposed to start a new Hydrocort medication for adrenal fatigue (as per Dr Hilgers) next cycle, as well. But with this new information, I'm wondering if he will want to change this protocol, or perhaps wait a while. My mother is REALLY against me taking cortisol, because my grandmother had Addison's disease and took cortisol for the last 23 yrs of her life. She is very scared of the side effects, and regardless of what anyone says, she thinks there is a link between her prolonged steroid use and the cancer she was diagnosed with in her 70s. She wants me to go to an endocrinologist for a second opinion on this adrenal fatigue issue. All I know is that when I filled out the questionnaire that Dr Hilgers sent me, I was like, "OMG, I am not lazy like I thought! There may be a medical issue that makes me feel tired ALL the time and sleep in until 10am!!"

I'll keep you posted on this part next week when I get a chance to call PPVI.

I'm still just so stunned that I actually have MTHFR. This is so huge. I think I'll call Dr Toth tomorrow and see what he thinks of this diagnosis, and if he thinks I should add anything to my treatment. I know some women take heparin or lovenox. Hopefully the baby aspirin alone will do the trick...

Wow. Can you believe it?

19 comments:

Hafsa said...

Yaaaaahhhhhooooo! I'm doing little dances in my chair. That is such great news!!!!!! Things are looking up for the IF women.

Sew said...

WHY DIDN"T YOU CALL OR TEXT ME THIS!!! CRAZY LADY DON"T MAKE ME COME OVER THERE!

Actually from what my Dr. said you need high doses of B6, B12 & Folic acid. That is what is supposed to help, but I am not really sure of the total treatment!

I am so happy for you! That is great news! Who would have known!!?? See I am good for something sometimes, I am not always a PITA!!! :)

This_Cross_I_Embrace said...

You ARE good for some things :) I asked about the B vitamins, and my Dr said folic acid IS the major B vitamin...? Oh well, I already take 500 mgs B6, so I have that covered. I just hope this is finally the missing piece of the puzzle that I needed to put in place!! (PLEASE, God! No more pieces!!)

Life In Mazes said...

Wow, that is so much to take in and I pray that this is your missing piece! You are going to be one excellant mom!

mrsblondies said...

It's so great that you got some info on one of the possible causes of your IF and that it's relatively easy to treat. I really hope that this was your last obstacle to motherhood.

Angry Infertile said...

What is MTFHR? (not sure if I have the acronym right) How did you realize you might have it?

Thanks for the prayers. I've been thinking about adoption for a long time. I also do not want to give up on pregnancy.

This_Cross_I_Embrace said...

Lol, I always mess up the acronym, too... I usually end up writing MTHRFR, because when I first saw this acronym written I thought someone was abbreviating a curse word!!

Anyway, I don't know TONS about it, but it is a blood clotting disorder common in women who have recurrent early miscarriages. The blood clotting creates problems in implantation, because the blood lines between the woman's uterine lining and the embryo is disturbed... hence, the m/cs. But apparently you can have this even if you've never been pg (or never tested pg) before!

It's a simple blood test, I just went to LabCorp and got a bunch of vials of blood taken (I had them run them ALL, all the known blood clotting disorders).

B, my guess would be that even in an IVF situation, if you have a blood clotting disorder of this nature, no amt of progesterone support could keep you pg. So if you can, try to get tested before your next cycle!

This_Cross_I_Embrace said...

Oh sorry, I just read your ? again, and you weren't asking HOW I found out I had it, but how I DISCOVERED I MAY have it.

Well... someone on a Catholic IF email group emailed me specifically to say she went 10 yrs through all kinds of IF treatments... also had never been pg. Her story/history was a lot like mine, too, with PCOS, etc. Anyway, she finally had a Dr test her for these disorders, and she tested +. Started treatment pre-conceptionally, and got pg the very 1st cycle!

THEN, my good friend Sew :) has a NaPro Dr who find that MOST of his IF patients have at least one of these disorders, so he tests everyone who comes in to his office. That really made me want to get tested. I felt like these were "signs"- even though I didn't really fit the description of the norm.

Find joy in every journey said...

OMG!!! What a SIGN!!! Are you going to see a hematologist? I can email you a list of drs. from the immune board I joined.

Check out this guy...I am toying with the idea of consulting with him.

http://www.haveababy.com/SIRM/aboutSIRM/centers/greaterlehighvalley.html

Sew said...

If you have a blood clotting disorder IVF can not come in and "save the barren day". ;) Another reason IVF is for the birds, it doesn't diagnose, just mask the disease! ;)

Praying for Hope said...

Congratulations on your discovery! One step closer to an answer and a pregnancy.

Jodi said...

I really hope doing the baby aspirin does the trick :)

Fight The Good Fight of Faith said...

WOW I can't believe it! Oh I hope you get treated fast and conceive soon!!
Thanks-be to God, all on His time eh?
You are in my prayers!!!

LifeHopes said...

I have to admit, that acronym is easily mistaken for that cussword! haha!!

Seriously, I pray that this is the last piece of your puzzle. How beautiful would that be? Some vitamins fixing the problem? Please, Lord!!!

Maybe we should all get tested.

Heat n Tequilla said...

I found you off of one of Tersea's friends blogs. Hope you dont mind but I wanted to give you some hope. I have MTHFR with 2 deformed genes as well. I am currently 22 weeks preg and our son is very healthy. I take a daily injection of Lovenox, in the stomach. I also take extra folic acid and baby asprin. I am swearing by this lovenox drug I have had numerous miscarriages and finally after starting this medicine a healthy baby. Good luck. If you need anything let me know.

:)

allyouwhohope said...

Great news!!!! I SO need to call about this. I can't wait to hear that the treatment worked!!

And thanks SO MUCH for the prayers by the way!

And the closeness to the swear word is how I've always remembered the letters!

Jeremiah 29:11 said...

WOW, keep us posted on all this. Have you heard yet what the treatment will be? How many different kinds of blood clot disorders are there? Do ALL of them lead to miscarriages? Just curious...

I called my doctor on Friday to inquire about getting tested! I haven't heard back yet, but I will keep you posted. :)

Thanks again for sharing about this. HOW CRAZY if this ends up being "the" problem for some of us??

Living Advent said...

I'm happy that you're getting to the bottom of the infertility and praying for you that you'll be getting that BFP soon.

barbie said...

Hi there! I just wanted to ease your mind. I'm on cortisol and it's the most amazing thing I've ever taken! I fell just like you said, I"M NOT LAZY! I can't tell you how many years I beat myself up for my lack of energy, telling myself I must be the laziest person in the WORLD! I would watch tv and think "how on earth do those people have the energy to do that?" I'm on 30 mg cortisol and am feeling like a completely different person than I did a year ago. I've been taking cortisol for one year now. This past week I get up at 6 am to workout and then go to work with my dh all day (he builds houses) Don't worry about taking the cortisol. If you have any concerns read "Safe USes of Cortisol" by Jefferies He literally wrote the book on using cortisol for adrenal fatigue. HE made me feel alot better about taking it! IF you have any questions feel free to email me! Sorry about the book I wrote here! Take care!