The scavenger hunt continues

This section is for discussions with other women who have probably been through the same signs/symptoms that you may be experiencing. Please note, we cannot offer medical advice and encourage members to discuss their concerns with their doctors. New members, come on in and introduce yourself!
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heather j
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Location: TN

Re : The scavenger hunt continues

Postby heather j » Wed May 30, 2007 11:57 pm

Nothing more to offer, but you are dead-on with the stats on PAI. 50% is what I was told by the geneticist, most people aren't tested for it, and it's usually only screened for on an as-needed basis (hypertension, PE, hx of blood clots). In fact, my doctor explained that it is one of the more common disorders in terms of coagulation. All in all, though I can tell you're a bit worn from it all, it sounds like the hematologist was an excellent contact for you to make. There are some active members in the Houston area. Try posting an inquiry in the Texas forum - I'll see if I can dig up some people for you to email.

adgirl
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Joined: Mon Nov 13, 2006 01:22 pm

The scavenger hunt continues

Postby adgirl » Wed May 30, 2007 11:49 pm

I'm really getting tired of this whole search for answers I've been on. I started late last year researching PE and trying to make some sense of what had happenned to me. Based on input from the forums, I sought out a peri to see about testing for underlying disorders -- he didn't feel it was necessary b/c I made it to term and my child and I both lived.

I didn't care for that answer and still wanted to be tested for underlying disorders, so I went to my regular doctor and requested. He ran a panel, but it didn't include everything listed here, so I asked my OB to run what was left. Two weeks ago, the tests had all come back normal except for the PAI-1 4G/5G mutation. My OB had no idea what to do with that information, so she sent me to a hematologist.

I met with the hematologist today and he was a little gloom and doom and even went so far as to say that he and his wife only had one child b/c she had had pregnancy complications. I kind of felt that I wasn't going to get a very objective opinion from him on TTC again. Also, he didn't know a whole lot about the PAI mutation and said that it was not a common clotting factor. (My research says that about 50% of the population has it, but it is rarely tested for, but that's beside the point). ANYWAY, he is going to do some research of his own before he makes any recommendations. He thought maybe Lovenex would be in order for me. He is going to consult with some colleagues in Houston that specialize in this stuff. He also wants me to have a consultation with someone in a medical group in Houston. I ended up pretty impressed that he wanted to get to the bottom of all this and figure out the best way to proceed.

So, I'm getting frustrated at how long it's taking to sort it all out, but I do want all the facts and best treatment methods before TTC again.

My question for you guys is a)does anyone have any more info/research on PAI-1 4G/5G? and b)does anyone see a peri in the Houston area?

Feel free to email me directly with the Dr. recommendation...

Thanks!


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