Thursday, July 22, 2010

More Tests

I went to the RE yesterday for a WTF after miscarriage appointment, and it went surprisingly well. I was truly expecting that given I’ve had 2 IUIs with injections, and both of them worked, but one ended in an ectopic, and one ended in a miscarriage, that he was going to say to just try IUIs again. And he did. BUT he said that we should do a miscarriage panel, to rule anything out before I get pregnant again. I was so happy to have him take my one miscarriage seriously. He said most doctors will wait until people have at least 2 miscarriages before they will do all this testing, but he said he didn’t want us to go through that grief if we didn’t have to – thanks doc! So here’s the list of tests that I’m going to have – all blood tests:

ANA w/Reflex if Positive
Anticardiolip Ab, IgA/G/M, Qn
Chromosome, Blood, Routine
Factor V Leiden Mutation
Fibrinogen Antigen
Homocyst(e)ine, Plasma
Lupus Anticoagulant Comprehens
Protein C-Functional
Protein S-Functional
Prothrombin Time (PT)

And a chromosome, blood, routine for the hubs. I think there are other tests that are part of the “miscarriage panel” but I had them done as part of the “treatment panel” so I don’t need to repeat them. I’ve spent the last hour on the phone with the insurance company and the lab company, getting procedure codes, and confirming that these are all covered by insurance, and it is, or at least 90% of it is. So I expect to pay $450 for these tests, which will max my deduction of $1,000 per year. Plus $80 for the hubs’ test, which is 10% of the total price. Not too bad when you consider what else we’ve paid!

Then I also talked with the RE about genetic testing after a miscarriage. As a reminder, the doctor and nurse at the RE office said there was no heartbeat, and then told me my options. I was such a wreck, and was not thinking clearly. I didn’t ask them about genetic testing. And then, a friend of mine suggested I go to my regular OB to confirm there was no heartbeat and talk through options. I did, and my OB was great, but when I asked about genetic testing, he said it was usually inconclusive and he didn’t do them, and didn’t recommend it and therefore doesn’t do it. He did the D&C, and we didn’t have genetic testing. I asked my RE about that yesterday, and he said that if they would have done the D&C, they definitely would have done genetic testing, and he wished we would have had that done. He said that it is inconclusive about 1/3 of the time, because it gets the tissue of the mother instead of the baby, but if they can get some answers about 2/3 of the time, then it’s worth it. He said most regular doctors don’t do it because it’s not usually covered by insurance, and it costs about $1K, but with us fertility patients, we’re used to paying out of pocket, and what’s another $1K if it gives you answers? Seriously, after what we’ve spent (see earlier post), and what we’re going to spend I’m sure, I’d love to have some answers. So I regret not having the testing done, and not pushing it with my doctor more. There’s nothing I can do about it now, but I told the hubs that if we’re ever in that situation again, that he needs to force the issue, and make it happen! He said ok. Plus now that I have the information, I think I’ll be able to be stronger about it. I see my regular OB next week for my post-op appointment (huh, just realized that will be 6 weeks post-D&C - I wonder when I’ll get my period) and I’m not sure if I’ll mention it to him or not. I really like him, and he normally deals with regular old fertile patients, I’m sure, but he should at least allow the option to do testing, particularly if the patient requests it! Sure, tell me the risks of inconclusive testing, and tell me the cost, but allow me the choice, right?

I can’t dwell on the genetic testing thing – I’m just happy to be trying something new. We’re at least seeing if there’s anything wrong, and then treat for it. It takes about 4-6 weeks to get the results of the tests, but that’s ok. We’re not going to do treatments again until October anyway, so that will be fine. Is it strange that I’m hoping that I have something wrong with me???


  1. I hope the 4-6 weeks go by quick so you can get some answers before tying another treatment. Best wishes

  2. I don't think it's strange at all. If it's something straightforward, like a clotting disorder, the fix is so darned easy.

    About the genetic/pathology testing, I'm really surprised your OB said that but am guessing that you're right, that in dealing with regular patients he just doesn't deal with it so much. It ISN'T worth fretting over now, but I think if it happens again your plan to ask for it is smart (and, incidentally, my otherwise CRAPPY insurance did actually pay for the genetic testing from my second m/c so it may very well be covered). The list of tests looks good and I really hope you get some answers.

  3. you're hoping something (minor) is wrong, so that you can address the issue, and not have another loss. makes total sense!!! be prepared for the fact that they will take ALOT of blood from you. they took 16 vials for me when i had the tests above, and i nearly passed out. was not mentally prepared for that. and if you're having the test in the morning, don't eat first. you want fasting levels for some of those things. thinking of you :o) xoxoxoxo.

  4. It might very well be strange but I totally know the feeling. Every test I have that comes back normal gets me a litle more frustrated. No, I don't really want to find out something is horribly wrong but at least attributing 14 years of no pregnancies to something specific and then working to correct that thing would be FORWARD MOVEMENT.

    I'm happy your doctor wants to get the testing done. It feels good to be proactive with this stuff.

  5. I don't think it is strange because I TOTALLY understand it. And, I really like that your doctor is actively moving forward with testing after "only" one m/c. That inspires me to try to talk to my insurance company and see if they will cover it -- our nurse implied that they usually don't after "only" one, but maybe they would do it. I really would like to do it because the thought of just waiting to see if it happens again absolutely terrifies me.

    Hoping so much that you find something small and easily fixable and that you can feel better about it all.

  6. So glad your RE is being so thorough. One thought about the genetic testing. Even if it was conclusive there might not be that much different you'd actually do. We're definitely going to have genetic testing out of my D&C today, but really, as I understand it the most it's going to tell us (besides just confirming whether it was a chromosome abnormality) for future purposes is whether we have a translocation or not. Which would mean we have a 10-20% chance of this happening again. Otherwise, even if it was a chromosome problem, we're back to having the same chance for having another chromosome problem as correlates to my age (which isn't fantastic). It *might* push us to donor eggs faster if we discovered translocation, but it might not. *Maybe* we'd do genetic testing on embryos before transferring, but that's pretty much a moot point for me since I don't respond well enough to retrieve multiple eggs for IVF/ICSI. (Although this might be a possibility for you.)

    All to say: I wouldn't kick yourself particularly hard about not having done the genetic testing out of your D&C. It might not have really changed how you'd proceed from here forward anyhow.

    Lots of luck with all the testing you have coming up. Maybe we'll be back on similar cycles in the next few months(?) but with a lot more success this time for both of us!!!

  7. It sounds like you have a great doc. I hope the time flies by and you get the answers that you're looking for.

    If you haven't had the blood drawn yet, try to drink lots of water helps things flow better!

  8. So happy for you that your doctor is being so proactive and getting you tests now ~ might as well do it now and avoid as much heartache as possible, if possible. It has to feel good to be moving forward. I wish that I would have gotten the tissue analyzed - I really would have liked to have known whether it was a chromosomal abnormality or something that my body did. I'll never know.

    I hope that they find something that's easily fixable. Glad you have such a good RE :-)

  9. I'm so glad your RE is being so thorough! That's so great that he'll put you through all of the testing now so you don't have to wonder about everything when you're pregnant again! I hope you find your answers and an easy 'fix'!

  10. It's not strange at all -- obviously _something_ is wrong otherwise we'd all have babies already. And finding out what it is, ideally something easily fixed, would make getting there easier. I think "unexplained infertility" is a tough label to bear, as you don't even know what to do to improve your chances.
    Have a good summer! And then good luck for the next round of IUI!

  11. It's fantastic that your RE is so proactive. There are some studies on the possibility of ectopic pregnancies being correlated with immuno issue (as miscarriages can be of course) so I truly believe this is the path to go to get answers. As for the genetic testing you are right, no point in dwelling on it now anyway. Onwards and upwards! Love, Fran

  12. I too hope that they find an answer to why you've had to go through all this. BUT, only if it is something easily fixable. Otherwise, I hope that they say you are all clear and just had bad luck. Although 'bad luck' feels like shit (why??? you know?), at least it means that your luck WILL change.

    As for the genetic testing, I agree with the other ladies here that you shouldn't worry about it now, although I agree that it might have brought you some peace to hear WHY this happened (if fetal genetics was indeed the reason). But the information is not in itself super useful for moving forward, so... anyways.

    I am glad you have such a great RE, it sounds like you are in wonderful hands.

  13. It sounds like you are moving in the right directions as far as answers. Many hugs to you!!

  14. Thanks for listing those. I'll be going in for my blood tests in October when our insurance kicks back in.

    One thing you might want to ask your RE about is testing for celiac disease. It's a simple blood test, followed up by an endoscopy if positive. CD has been indicated as a potential cause for miscarriages and infertility. It is often undiagnosed as IF may be the only symptom. It is treated with a gluten-free diet. A friend of mine sent me an article (I'll look for it for you) about this, as she has been diagnosed and is aware of our two miscarriages.

    Just something simple to rule out! I also hope something is "wrong" that they can treat -- answers always feel so much better than the unknown.

    Big hugs,

  15. Here's the link:


  16. I had the genetic testing done with my two D&E and both came back genetically normal...I had similar testing done after my first two miscarriages and at that point I did come back positive for the MTHFR and Antiphosphalipid antibodies...Before we got pregnant with our 3rd we did the Lovenox, Baby Aspirin, Foblic Tab, and Progesterone to fix the above problems but it still failed.....Tried again same thing with number 4 and failed again...and that when the immune testing began and when things really started to make if I was you and you are going to go through all of the tests you mentioned I def think it is worth it to have an immune workup done at least test for Natural Killer Cells...Not sure if your Dr. does this but all SIRMS do and also I see Dr.Kwak Kim and she see patients from all over the US...Does phone consult/accepts insurance too....I dont know maybe Im overstepping by suggesting this but it has worked for us and I wish I would have known about immune stuff way back when so I didnt have to suffer all those losses...Take care:)

  17. I totally know how you feel - as soon as my betas get back to normal, i am going through the whole work up of miscarriage tests. I have big fear that everything will come back normal. And maybe that will end up being OK, but that doesn't give me much hope as we try for our third pregnancy.

  18. So glad you are getting the additional testing. If there is a problem, I hope they find it and are able to help you.

    I've been thinking of you.

  19. I hope the tests reveal something simple and easy to fix. I'm glad you're having this done. I'm rooting for you lovely lady!