Thursday, September 30, 2010

More Answers or Just More Questions?

First, my daughter Tania's artwork is featured on Still Life 365 today! 

Now down to business.  Today I finally got the clinic notes from the perinatology consult I had earlier this month.  To my surprise the blood tests actually yielded some interesting results, however this does little to clarify why my pregnancy history is so tragic or whether there's any hope for the future.  I'll spare you the life-threateningly boring science lesson about clotting disorders and just link to the heavy scientific explanations.  If you want to make your head explode, go ahead and try to understand this stuff.  Here are the results from my perinatology consult:

ANA (antinuclear antibody) – Positive 1:40 with speckled pattern
Apparently this is a low positive, so there's absolutely nothing definitive about it.  Just another positive result that makes doctors go "hmm", but not "AHA, now we know what's wrong with you".

Beta 2 Glycoprotein 1 -
IgA: 69.46 U/mL
IgM: 4.84 U/mL
IgG: 3.72 U/mL

Note from Mayo Clinic Lab for IgA, IgM, and IgG interpretation:
10.0 U/mL or less = negative
10.0 – 14.9 U/mL = borderline
Greater than 15 U/mL = positive

If IgM or IgG is positive, the diagnosis would be antiphospholipid antibody syndrome (a.k.a. Hughes Syndrome, which is certainly easier to say).  Only my IgA is very elevated and (surprise!) there is not adequate research to indicate what this means.  Again - "HMM" a little louder this time, but NOT "AHA!!".

In 2007 just after my first loss I tested positive for Anti-cardiolipin antibodies.  Results from testing immediately after delivery showed a "Moderate Positive" for IgG, followed by retesting the following month which showed an "Inconclusive" level.  Tests for IgM were negative.  Positive IgM levels indicate a problem.  Positive IgG levels - well, no one's really sure exactly what that means.  Hmm - not AHA.  Are you seeing a pattern here?

Subsequent Anticardiolipin testing has been completely negative both after losing Miles (July 2007) and now (September 2010).  As if things needed to be any more unclear, results on all of these tests are transient - you can test positive and then test again later and be negative.  Or vice versa.

Additionally, I've tested positive for heterozygous for MTHFT mutation C677T.  This means I have one copy of the gene.  The significance of this, as you may have guessed, is unclear.  Hmmm. If I were homozygous (two copies of the gene) then it would be clinically significant. 


So those are all the answers I've gotten from 40+ vials of blood, not to mention buckets of tears. I never expected any definitive answers about my horrible pregnancies from the perinatologist.  Indeed, I'm convinced that there's not a single person anywhere in the world who can give me solid answers.  Still, it's depressing to hear yet again that there is no certain explanation for my losses and no clear way to prevent it from happening again (other than remaining Super Infertile!). 

I've been reading more about Hughes Syndrome and I do fit a lot of the descriptions.   This post is getting pretty long, though, so we'll get into that later.  Sorry to keep you on the edge of your seat!  Seriously though, this blog is meant for the poor souls who will inevitably follow in my unlucky footsteps so we have to get into boring clinical stuff from time to time.

5 comments:

Nick and Kristi said...

I really think that my Dr....Dr.Kwak Kim in Chicago would be able to help u...n fact I know she would be able to this is all she deals with...all these blood test were done when I had my first consult...She in a Reproductive Immuniologist which is the key...she takes out of town patients and works with your re...ob...or peri...just requires you to come to her for first visit...I believe this is all good news if the right person can interperate/tx the issues....she is the only one in my opnion that truly knows about these issues/recurrent miscarriage or implantation failure...Just something to consider:)

Lori said...

Oh Annie...I have no words (mainly because I just don't even understand half that stuff!) but it sounds so reminiscent of SO much of the testing my sister has undergone in the last several years...throughout her miscarriages and her Lupus (and related issues thereof)...in the last pregnancy she had (back in March, which sadly she lost at about 7 weeks), she was able to be matched up with a doctor she found REALLY informative and helpful--a Lupus doctor (not sure what that is) who specialized in Reproductive Immunology at Duke (my sister lives in Cary, NC, so that's also VERY CLOSE!)

If you are interested, I could ask my sister if her doctor (still sees her for her lupus issues as well as some other things) would mind looking at these results and maybe throwing out a direction for you to head? It could be as easily as an email or two maybe...

I wish I had something valuable to say. Just know I'm thinking of you!

Shandrea said...

Annie,
I don't understand the medical stuff posted but i still want to send you some hugs. and want you to know that i am praying for you. I am hoping that you will get some definate for sure answers that can result in a healthy , full term pregnancy. Sending you love and praying for the best. May God close every door except the right door.

jrs said...

I am sure your willingness to post all this jargon and lab info will help others that follow. I am sorry that neither myself nor the perinatologist can make sense of any of this. Be sure to look out for my bill in the mail though. :]

I bet that was really neat to have Tania's artwork on that blog.

apsfa said...

Very sorry to hear about your loss and pregnancy problems. Looks like you have APS with no question.

Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org