Friday, April 4, 2008

Consult following the fourth loss - and more tests!

So before I share about our new plans, I thought I'd catch you up on the tests and test results that Berilac and I have had following our most recent miscarriage.

We lost our fourth pregnancy to early miscarriage on Jan. 24th, 2008. In an effort to get pregnant that cycle we were using injectible fertility medications to try to release more than one egg. The cycle turned into a disaster (in my opinion) and in the process (maybe I saw the writing on the wall?) I booked a consult (a second opinion) with a second RE. The consult was scheduled for early February. In mid January, when we found out we were pregnant, I didn't cancel the consult. I guess when loss happens to you 100% of the time, it's hard to think it'll work out any different (at least that's what I used to think, today I have a very positive outlook on how things will turn out!)

I met with the second opinion RE, let's call him Dr. Danderfluff. It was very refreshing to talk with a doctor that was more interested in getting to the bottom of things, taking more tests, reviewing and comparing old tests to new ones, basically rolling up his sleeves and digging into the causes behind our recurrent miscarriages. My current RE, we'll call her Dr. Chubb, has always feigned "bad luck" and dismissed my ideas for probable causes - mainly due to their controversial nature.

It cost us hundreds of dollars to meet with Dr. Danderfluff. He works at one of the top clinics in the country. Of course they do not have a relationship with our insurance carriers and thus it's all out of pocket. As we discussed our history a few suspicions surfaced:

  • PCOS: I responded really well to fertility meds. If you remember, during one of my cycles I was producing 9 follicles when we were shooting for no more than 4. This response is especially surprising given that I have the diagnosis of early menopause, early menopause suggests that I should not respond well to drugs. Just to cross all our T's, Dr. D suggested I get tested for Polycystic Ovary Syndrome (PCOS). I don't show many of the obvious signs (obesity, male traits such as facial or chest hair, etc) but b/c I have recurrent miscarriages (more common for women with PCOS) and b/c I respond with many ("poly") follicles during a medicated cycle - it just might be that I've got PCOS.
  • Autoimmune issues: People with autoimmune issues have a higher liklihood of having miscarriages. In April of 2007, I tested positive for ANA - my Hashimoto's Hypothyroid was found. People who have one autoimmune issue are more likely to have others pop up over the course of their lives. If there is another autoimmune issue - it needs to be treated.
  • Uterine health: My first two pregnancies last longer than the last two. (10 weeks, 8w, 5w, & 5w respectively). Dr. D suggested that perhaps one of the three D&C's from the first two miscarriages perhaps caused damage to my uterus and thus did not provide a place for the 3rd and 4th pregnancies to nestle into my uterus.
  • Alloimmune issues: These are cousins to autoimmune issues. They are very controversial - very difficult to prove that they exist and that the treatment identified for them is effective. But women who test positive for these types of issues generally have recurrent miscarriages and vice versa.
  • Verification of early Menopause: So far my confirmed diagnoses are: Rh-, Hashimoto's Hypothyroidism, Compound Hetero MTHFR, & suspected early Menopause. The Rh- does not need to be treated while trying to conceive, the Hashi's and the MTHFR do need to be treated - and we are treating them. So still in question is the quality of my eggs and basically my "sell by" date. How close am I to menopause?
  • Sperm quality: So all of this time we've been concerned with my egg quality and we've NEVER tested Berilac - no basic sperm analysis, no nothin'! They never tested his sperm's swimming ability b/c we've gotten pregnant each cycle we've attempted - this implies that the soldiers are good swimmers. But given that we've lost all the babies - that could imply that we have sperm quality issues. Dr D pointed out that our second loss was due to XXYY (tetraploid) which indicates that more than one sperm entered the egg. This could be an egg quality issue, or it could be a sperm quality issue. It is possible that they swim well, that they just don't deliver the package of DNA well, or the DNA package itself has issues.
At the end of our consult he wrote up an entire lab sheet of tests for us to take. My first reaction was of excitement... finally someone was doing ALL the tests, not just the conservative (read: "standard") ones. My second thought was ... how much is this going to cost me outside of my insurance coverage? *Gulp*.

Then I had a bright idea.

I emailed Dr. Chubb, my current RE, and we scheduled a follow up appointment. I met with her just days before my expected period (as many of these tests have to happen on the third day of your period). She was so very compassionate, I think she even gave me a hug. It felt sad and strange to have the entire staff look upon me in sadness. The empathy was nice, the pity was a bit much - but honestly my heart is so broken, I have a hard time telling the two apart. But I put my head down and focused on the consult with my doctor.

I hadn't told her about my consult with Dr. Danderfluff, but proceeded to ask her to take all the tests that Dr. Danderfluff recommended. Surprisingly, I didn't have to work too hard - she was so compassionate and helpful, at this point this extremely academic and conservative specialist was suggesting I do the alloimmune testing on the side (as she doesn't run these types of tests). It was nice to feel heard.

So alas, after the consult with Dr. Chubb, she ordered the litany of tests that Dr. Danderfluff wanted to order for me - and because she works with my insurance carrier - all the tests suggested by Dr. Danderfluff were covered! Whew.

So you could be disappointed that I took this long to update my blog or you could look at the positive side of things - I have spared you the agony of waiting for the results - I took these tests back in early March. Drumroll please:
  • PCOS: in order to test this they took all sorts of blood levels: glucose levels, insulin resistance, testosterone levels, & LH:FSH ratio. I tested negative in every test for PCOS.
  • Autoimmune: We took an ANA Screen to see if there are any other autoimmune issues that might be lurking … although last year at this time I tested a very low positive for this, this year I was negative.
  • Uterine Health: My doctor ordered the gold standard of uterine evaluation tests. We did a Hysteroscopy on March 13th. What is a Hysteroscopy? Well, they send a camera up my wahoo to check out the landscape, see if it was a place where a baby could lean back, kick up their feet, and call it home. They had me go under general anesthetic, they were looking for septums, fibroids, polyps, and/or scar tissue and if any were there they were going to remove them. The results of the surgery were officially "unremarkable". I had no physical issues with my uterus – a very “fertile” uterus.
  • Alloimmune tests: we still have not conducted these tests. It’s so hard to consider taking these tests because the treatment for these tests, if you show abnormal test results, is called IVIg, which basically is a blood transfusion near pregnancy implantation. The premise is that you’re putting other people’s blood in your blood, so if you have any antibodies protecting your body from foreigners they are going to attack other people’s blood rather than your growing baby.
  • Verify early menopause: so unfortunately, our cycle day 3 FSH blood levels showed an increasing level – in July of 2007 my level was 11.7, today it’s 12.3 a woman my age shouldn’t have such high levels and the more it rises the more concerning it becomes. In terms of my AMH level. The test result range is between 0.0 and 6.5:
    if you’re above 5.0 you most likely have PCOS, if you’re below 0.3 you are in premature ovarian failure. A woman my age should have a reading around 3.0 … my level came back at 1.0 – this test result validates that the elevated FSH is pointing toward early menopause, rather than something less concerning – like maternal twinning (women who have fraternal twins run a higher than average FSH level, hence them having twins – their brain increases their FSH levels, the ovaries respond by producing more than one egg at ovulation) which can be passed down from mother to daughter.
  • Berilac’s sperm quality: this was the surprising test result. All this time we thought this whole miscarriage issue was all because of me and my rotten eggs. Well Berilac took two tests. One test came back normal, but another test, the sperm DNA fragmentation and decondensation assay came back showing abnormal results. Basically, this means that Berilac's boys are delivering packages well, they are just not unloading them properly.
So what does all of this mean?

It means that I don't have to worry about producing too many follicles during a technology assisted cycle (as I don't have PCOS) that combined with the fact that my ovarian reserve is seriously in question means that I don't have to worry about OHSS - one of the major complications that can occur while doing an assisted reproductive cycle. It also means that my biological clock, thought I don't hear the ticking, is pounding in my ... ovaries?? regardless of how young I am. And lastly, it could mean that perhaps these miscarriages aren't all because of the failures of my body, perhaps Berilac has contributed to the losses. Honestly, the idea of this feels good to us. It's hard for me to go through repeated medical procedures, medications, etc. while Berilac wants to take my place - and do all of the yucky tests and treatments instead of me. Although that's not possible, it does mean that there are supplements that he can take to improve the DNA within the sperm (21 pills a day!) so he'll do that for a few months and we'll have his test retaken - we hope this will resolve his contributions to the miscarriages.

So basically, we would really benefit from testing the quality of my eggs and the quality of his sperm (in the hopes that we find "normal" ones) when you use normal egg and sperm, you have a higher liklihood of creating normal babies - basic concept, I know. Just not one we have mastered yet. We would also benefit from preserving some of my 30 year old eggs for a few years so that if menopause comes knocking in a few short years, I'm not left emptyhanded.

The last thing I wanted to say is ... can you believe all of the informative links included in this post? It's frightening how much we've learned over the last couple of years - for those of you who know more than me, please share and post your references in a comment.


  1. Hey!! Wow you've been busy! I'm so happy that your Dr. was willing to do the testing and didn't have worry about paying for it out of pocket! At least you have some answers and can move forward with a better game plan. It sux to have to do all the testing, but what a difference having some answers. Praying for you and hubby and pray soon you will be holding a healthy baby in your arms! It will happen for us!!


  2. Holy Testing Batman! My goodness woman, you could have at least SHARED that you were going under general anesthesia with me!!! (tsk tsk) I'll leave the hand slapping till later...

    I know its probably going to sound bad, but I can imagine your relief in knowing that Berilac is contributing a wee bit to the issues and its not all 100% you. I'm glad, at least. (Is that wrong?)

    I'm also glad you sought a 2nd opinion. Good job. We'll be praying for you and his (gulp) 21 pills per day. Yikes!

    Sending love south,

  3. WOW!! I'm glad you are being listened to and many of your questions and concerns are being addressed. I hate being in the "unexplained" category. The whole "High FSH/twinning" was a new one for me. I am a fraternal twin. It took my mom a while to conceive us and I wonder if my more elevated numbers (I think I'm an 11, too) could have to do with multiple follies at O. Hmm....more stuff to think about. Thanks for updating us!!

  4. Hey, I'm contributing much more than a "wee" bit, if you know what I mean!

    It is frustrating that we didn't learn about my issues much sooner as we never would have tried the two IUI cycles. IVF with ICSI is supposed to dramatically improve our chances (even if the 21 pills per day don't).

    Wanna switch Polly? I'll take the shots and you take the pills!!

  5. Way to get tested!! Sending all kinds of you-will-prevail vibes your way.

  6. That's just great Polly!!!!!

    I went to church on Saturday and said a prayer and burnt a candle for you and your husband.


  7. Wow, girl, you sure have been busy. I'm so glad that your insurance covered all of those tests and that you were able to get lots of answers. I have such a good feeling for you and I thank you for inspiring me to keep trucking...

  8. Wow, Polly! You have been busy with the testing. As horrible as they are, knowing what is going on lets you know what exactly you are up against. I hope that gives you a little comfort. Sometimes it's all about the little victories, right? You are in my thoughts and prayers that you have a little one in your arms very soon. ((Hugs))

  9. Wow, Polly! Loads and loads of tests! It sounds like you're armed with the knowledge you need to proceed, though. I'm so, so happy for you. It sounds like your second opinion with Dr. D was a very good idea, and you learned some critical things.

    Not sure if I ever told you this, but my AMH came back at .2 with highest FSH at 17. I have a friend whose came back at .1. Both of us are pregnant. So, don't let the literature scare you into thinking that it won't happen... and clearly you haven't based on your next post on proceeding with IVF.

    Phew... updates! It's so good to see that you're moving forward. I can't wait to see a positive pregnancy posting from you. I think about you often and wish only the very, very best for you and Berilac.

    xo Fortune Cookie

  10. I'm so glad you found someone to take a deeper look into your fertility and the cause of the m/c in the hopes of helping you achieve a healthy pregnancy and have a baby. It sounds like the future could be very promising having all the new information.

    Glad to see your update. Been thinking about you. Keep us posted.