First of all, thank you for all the information out here. Tis is the first place I have found where I can read about APS and real people's thoughts and experiences.
Here is my story - early this year I got pregnant with my first child. In May, at 22 weeks gestation I went into premature labor and lost my baby. Until tHen, all the ultrasounds were fine and my baby was developing well. I had had a couple of bouts of spotting but nothing serious. After I lost my baby, my obgyn made me do a battery of tests, from which the following results emerged -
Anticardiolipin antibody IGG - 38 the normal range is unto 20 I think
The igm and iga were normal
Antithrombin III activity - 62% the normal range is 80 - 120. %
All my other tests came out clear.
ANA, lupus anticoagulant, protein s, protein c, glycoprotein beta
As of now, I am on no medication. I have had no problems so far and before my pregnancy had no worries.
I will be repeating the ACA test in 3 months to confirm the diagnosis. Do I have APS? I'm really scared reading about strokes and clots. My doctor doesn't think I should be on any medication until an 'event', but that's just freaking me out. Will I have an event? What is the possibility of having APS and not having a stroke, clot etc.
I really need answers and no doctor seems to concerned or willing to talk at length.
SC333, hello & welcome. First, I send my condolences for your loss. My heart goes out to you. I hope you're getting the support from family and friends you need during this difficult time.
Right off, I must warn you that I have lupus without APS, and may not have correctly understood the APS info I read. The most "medical" (detailed) info I found on how APS is diagnosed has two required parts. For the first, History, your single late-term loss seems to count. (You should ask your dr.)
The second part is Test Results, which must be duplicated at least 12 weeks apart. I gathered that at least one of the 3 following must occur twice and more than 12 weeks apart: (1) LA = lupus anticoagulant, or (2) aCl IgG (> 40 units) or IgM (> 99th percentile), or (3) mid-to-high anti-beta-2 glycoprotein.
I read your post to say that LA and anti-beta-2 glycoprotein were negative, so maybe (1) and (3) don't apply so far? And (2) may not apply so far either, since your IgG was less than 40 units? Plus, you still need the 2nd set of results...
Only your doctor can explain these tests, your history, and what it all means. But I think those layered definitions do suggest some questions you could ask your doctor. For example:
1. What are the criteria for APS? How did I meet (or not meet) them? (You could ask the dr. to annotate a hardcopy for you, and give you copies of both sets of tests. If he doesn't want to, you could say you must know this info is readily available. What if you move or travel, and need the info PDQ?)
2. If I don't meet the criteria now, if I'm only "close", should I be retested later? If YES, when and how often?
3. What's suggested for people who aren't yet diagnosed but have had some abnormal values, but aren't taking an anticoagulant? (For example, low-dose aspirin?)
4. If I were to plan another pregnancy, should I consult a doctor before becoming pregnant?
I'm sure there's lots more to ask. I'd keep reading, if I were you. And I hope others here more knowledgeable about APS chip in soon. Again, I'm sorry for your loss, and I hope you get your many questions and concerns thoroughly addressed. Thinking of you, sincerely, Vee
