I have a diagnosis!
After 9.5 years of no diagnosis, I finally have something! I am so flipping happy to rid myself of "unexplained IF"....
My testing came back positive for MTHFR (heterozygous C) and PAI 1. So, today I start Metanex and continue my baby asa for life. I know I was tested 9.5 yrs ago for MTHFR and it was neg and I carried a pg to term on baby asa only. My dr said rarely it can be latent and rear it's head later in life. I'm not sure if I was ever tested for PAI, I believe that's a newer thing to look for. I'm waiting for a call back from the NP to ask a few detailed questions (one of the office people called to give me my results, they are not the most knowledgeable of the practice). I have no idea if I have Heparin or lovenox in my future, just happy to have something abnormal to put my finger on!
Re: I have a diagnosis!
Remind me what PA1 is? What is Metanex?
I have homo MTHFR (two copies of C) which is the most severe. I take a baby aspiring (for life) and I do the Lovenox when I'm pregnant (shots never bother me but those suckers sting!)
You take extra folic acid right?
I'm glad you have some answers.
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Metanex is a different version of Foligard, it's 2.4 of FA with some of the B vits.
PAI 1 is Plasminogen Activator Inhibitor 1, it acts as an inhibitor of fibrinolysis which is how your body breaks down blood clots. So my higher levels mean my body is not breaking down clots, it's treated with a daily baby asa for life.
I'm waiting to talk to the NP to get more specifics, the chic who called me from the office was shocked when I asked her if my MTHFR was A or C and hetero vs homog. I have no issues with doing heparin or lovenox if needed!
I can't tell you how many times I've mention to nurses at either my OB or RE about my MTHFR and they look at me like I'm from another planet. I also remember when I was first diagnosed I called back to ask the nurse which MTHFR I had (you know, homo/hetero and the #'s that go along with it). She said she couldn't tell from the lab work, so I had her make me a copy of it and when I picked it up I found it right away. Plan as day.
I just take 4mg of folic acid (it's a Rx) and add b6 and b12 with it.
I also have an additional blood clotting disorder (Lupus anticoagulant). I don't mind taking the Lovenox because I was surprised that it stung. I hear heparin shot is not as bad.
glad u have some relief from the diagnosis. I remember I was diagnosed with MTHFR, but it was the less serious/more common one so all my RE had me do was take baby aspirin while i was TTC and prego. best of luck as you move forward.
Maha,
I have my appointment with RE on Monday July 5 to go over our bloodwork. I've had 2 miscarriages (Dec & May) so he wanted to do furhter testing. I'm hoping that he'll be able to tell me something so I too can put a finger on it.
carrie