Thursday, April 8, 2010

Bad habits and protocols

I've developed a very bad habit of second-guessing my doctors.

They recommend Course A, and I am suddenly struck with a deep-seated compulsion to research Courses B, C and D.  Passers by shoot me strange looks as I sit in the parking lot of my doctor's office, surfing Google on my iPhone.

Why is A the best? 

Does he really know what he's talking about?

Why did he rule out B, C and D?

And what about E or F??

I've come to wonder what crazed, type-A infertiles like myself did in the world before Google.

This is often followed by a ritual known as, "getting a second opinion."  Or a third.  Or a fourth.

I'm embarrassed to report that in 2 1/2 years, a total of 4 REs (and an Ob-Gyn!) have had the dubious honor of probing my nether regions with the ultrasound wand. 

Of course, we all know where this bad habit has gotten me.  Doctors #1 and 2 advised me repeatedly not to have surgery for my endo.

"Your follicle count is too low already," they warned, punctuating their opinions with appropriately solemn head-shaking. 

But did I listen?  Nooooooooooooooooooo.

Instead I ran home and surfed story after compelling story of women who miraculously conceived (only one month later!)(twins!!) following their laparoscopic surgeries.

And I had a lap.

And was miraculously successful in raising my FSH from 5.6 to 17.2 in only two months!  Who says miracles don't happen?!

So I learned my lesson, right?  No more second guessing.  A Master's in Public Administration does not a medical expert make (duh!).    


Doctors #1 and 2 also told me I didn't have immune issues.  No such thing.  No siree, Bob.  Only an unscrupulous quack would even think to recommend such a waste of money as expensive immune testing.

And they were wrong.

And I was right.

How do I know?  Because those expensive and unscrupulous tests (can a test be unscrupulous?) told Doctor #3 my NK levels were some of the highest she'd ever seen.  And all the symptoms that doctors #1 and 2 attributed to endo, or a bad period, or a hysterical-infertile-who-doesn't-know-what-the-heck-she's-talking-about, suddenly disappeared after I began immune treatment. 

And here I sit, surfing Google yet again.

So here's the "protocols" part of tonight's post.

With all the hours upon hours that I've spent researching implantation issues over the last 2 years, I've spent very little time paying attention to anything IVF related.  I'm an IVF newbie in the truest sense of the word and all the endless permutations of different protocols literally make my head spin.

Like the the Micro-Antagonistic LV2A Conversion or the Long Flare GnRH Agonist + Menopur, or the...

OK, so I made those up.

But you know what I mean, right?

So here's my question.  Has anyone else here ever tried a Femara protocol with IVF?  My current doctor (who I really do like and respect) has me on a modified Estrogen priming protocol that starts with the patch on Day 16 of my current cycle (next Thursday) and adds Femara on Day 2 of the next.  Shortly thereafter come a mix of Gonal-F and Menopur every day, and it looks like I eventually add some Ganirelix too, although I'm not sure when?

The problem is I've read several places that Menopur can negatively impact egg quality due to increased LH/androgen production, and Dr. Sher recently responded to a question on his message board saying he doesn't ever recommend Femara with IVF for the same reason.  Not to mention, my LH already seems a bit high (6.1).

So are there any IVF vets out there who'd like to weigh in with their opinions on this?

Should I be concerned or should I (for once!) trust my doctor's expertise?

Edited to say:  Thank you all so much, by the way, for your comments on my last post.  I really wasn't expecting to have much in the way of followers so it's been a lovely surprise.


  1. I felt like you were writing your post about me :) I am the SAME way!! As you read, I added another RE to my basket of tricks and I am weighing all of what the last 3 Drs have said - hoping that the answers will miraculously pop up in Google... I am stuck..

    About femera, I have never taken it, but I know lot's of women who have. I have not heard of many bad things about femera. Isn't it similar to clomid? for those that can't hang with clomid?

    Can you send me an email (email on my blog) about intralipids? I am scared - you've done it, right? What's it like?

    Wishing you the best!!

  2. Oh wait, wanted to add- I was on menopur and I think it's il diablo!! I hated - HATED menopur!! I really don't think femera is similar to menopur... at least I hope not!

  3. Hi.. I don't have experience with Femara since my poor donor is the one dealing with that end of things, but boy do I have experience second-guessing my RE's! I routinely suspect that I have more information than they do... Lately it's been a little extreme, devolving into paranoid fantasies like he actually transferred arrested embryos so he wouldn't have to tell me there was nothing to transfer. Sigh.
    Thank you for your kind comment, btw. It was very cheering.

  4. Hi Julize - for what it's worth, when we asked my RE about Femara he said there had been some scare about birth defects in the past (although he dismissed them), but consequently, he never prescribes Femara. It is similar to Clomid, although I understand a bit more modern than Clomid and better. My IVF#2 (neither IVF#1 or #2 made it to retrieval) was intended to be an Estrogen Priming Protocol with Vivelle patch starting prior to CD1 and then Gonal-f and Menopur and eventually adding in Ganirelix to keep me from ovulating. I had to skip the Vivelle patch because we missed ovulation in the rest cycle (apparently it was day 7 of a 17 day cycle - craziness.)

    As one of the other posts says, Menopur is the devil - it burns going in - so not my favorite, but I hadn't heard that there was a thought out there that it resulted in reduced egg quality.

    I've determined that none of them actually know what protocol works better than another - it's only by random chance that they find one or the other that works slightly better for a particular patient. Even the reviewed research pretty much says there is rarely statistical significance to the success of one protocol over another.

    I'm with you on questioning every decision of our RE. But I don't see that as a bad thing. Our one second opinion so far was to do 'natural cycle IVF.' Yeah, right. I'm going to pay $12,000 so you can go searching for a quite possibly non-existant-that-month single egg in a retrieval.

    Btw, thanks for all your comments (and pointers) to autoimmune testing . I'm awaiting a call from our RE any minute now and it's on my list of things to quiz him about given my endo stage 3 diagnosis.

  5. Hi, just found your blog thru LFCA, and wanted to say hi! I'm also a beta-3 integrin lacker, just finished my 2 months of depot lupron, and on to prep for my first FET.

    I did menopur in my last stim cycle - also an EPP, with Saizen added. My understanding that it really doesn't matter what your "resting" LH is, when you are in a stim cycle, the meds control the levels. I've heard that adding a little LH helps with maturation. It does burn for a few minutes, but hey - a little burning in the grand scale of things- not such a big deal. Trust me, depot lupron is far worse, for far longer. But you'll survive it all!

    Good luck to you!!

  6. I wish I could offer advice, but I don't know much about IVF specifics. I just wanted to say kudos to you for sticking up for yourself in both situations. I know you have regrets about the first one. But really, we know much, much more about our bodies than our doctors do. So you have to trust your instincts, even if they're occasionally wrong.