Saturday, January 29, 2011

Thrombophila Results and Breaking Ties

Sorry for the delay in posting about our visit to the RE this week.  I had started the post that afternoon but then I had a 3 day work trip the very next day.  And to top it off the monitor on my laptop cracked so it was basically unusable and hence no lap top to write my post.  But now I'm back home with a computer so here it is!


We met with our RE regarding all the thrombophilia blood work I had done and everything came back as normal except one: MTHFR A1298C heterozygous. Apparently if you have to have one, this is the one to have. Yea me. And we never would have known about it if I hadn’t pushed for the test. Seriously, we are our own best advocates.

So what does this mean? Well it could effect implantation as well as clots that could have cut off blood flow to the baby. Although our RE is in the camp of Drs that only partially believe that it’s a problem so he wasn’t much help there. Honestly being back in that clinic talking with a Dr. that I have lost my trust in was so emotional for me. And to top it all off, as the RE was going through my results he absent mindedly pulled out our last ultrasound photos to get them out of the way while reviewing our chart and left them right there IN FRONT OF ME. So the whole time I had to stare at these pictures. Who does that?!?! I was really too emotional to talk and Hammer asked most of the questions, he did a really good job speaking for us. Here are some of the questions and answers we got back:

So do you think the MTHFR is part of our issues?

Not necessarily but I would put you on Folgard in the future.

So then as far as a possible embryo adoption cycle, would you do anything different?

I’d irritate the uterine lining because it might help with implantation although we generally use that for women who cannot conceive and you have proven that you can. It would really just be prophylactic since I think it might be an implantation issue. I’d also do the folgard as discussed and increase the progesterone.

Interesting that you would increase the progesterone. Do you think that this was our issue since the progesterone was 6?

No, your corpus luetum at that point in time was gone and the placenta should have taken over in the progesterone production so that’s probably why it was low.

So you don’t think that the progesterone could have been low the entire time due to an IVF cycle where you needed to give me progesterone thus causing a potential clot and preventing the placenta from functioning correctly?

Well most women don’t even need progesterone but we give it anyway because we don’t know who those women are necessarily.

Right, but in my case I wasn’t on any progesterone for nearly four weeks so could I have been one of those women?

[Here is where our RE generally makes odd faces and grunts while he tries to come up with an answer and generally ends up just repeating himself]

So if we did another IVF cycle what would you do differently there?

Same thing as the embryo adoption: uterine irritation, Folgard, increased progesterone and assisted hatching. [way to read our record because we did that this time!] You could also take DHEA at 50 mg.

Wouldn’t you want to test my testosterone levels first?

No, you certainly wouldn’t have high testosterone [Red flag for me here ladies because from what I've read you should never give it without testing first!]

So you wouldn’t change up the stimulation at all?

No other than maybe give you another 75 units of stims.

When we had a follicle check by Dr. S, he asked if we were on a combination Clomid/Injectable regimen?

I would not do that.  There isn't enough proof that it helps.

At this point I was completely done.  I feel like the deadhorse in the proverbial saying and he has the whip.  Seriously, what more can you get out of me using the same protocol every time!  We basically ended the meeting with him telling us to take some time to come up with a plan on what we want to do next. 

Afterward, Hammer and I sat in the car for a bit to talk and absorb everything.  While we did not come up with a plan, we did both agree that we were done with this RE.  Hammer himself said that he didn't feel our RE understood how to help couples that fall outside of the norm like us.  Finally!  He sees what I see!!!  We did discuss getting a second opinion at a clinic an hour and a half away (and that was Hammer suggesting this too!) but we're not moving ahead with that right now.  Although we have learned that this clinic basically takes the patients that ours cannot get pregnant and need more unique, individualized protocols.  Honestly it's not a given that this will happen but Hammer is more open to still trying after the most recent events. I think now I understand why I felt unresolved about ending treatment before.  I was so frustrated at why I could not feel resolved about our treatments coming to an end and ready to move forward with adoption.  I felt a bit of jealously for people who had this clear direction that I was lacking.  I'm not sure what God is doing right now, why he allowed this pregnancy to happen and end the way that it did.  The way is not much clearer than before and we are still praying for direction but we do feel that we are closer than ever to figuring things out.


Allison said...

((HUGS)) I'm so glad you've made a decision to get a second opinion from another doctor--I think it's what you need.

I have friends that cycled (and got pregnant) at both Cleveland Clinic and Reproductive Gynecologists (they have an office in Westerville as well as Akron, I think). If you want any information, please let me know.

Andrea said...

Bless your heart....I'm so very sorry that your RE was SO insensitive. Leaving those us pics was totally out of line. You would think that someone who deals with fragile emotions every day would be more cautious. Obviously this RE has gotten complacent....its sad.

Find an RE that shows you compassion. My RE did not sugar coat things, but was the eternal optimist...and a cheerleader of sorts. He felt like family to us and it makes all the difference.

Sending you love and HUGE HUGS...many prayers and encouragement :) You WILL find the perfect RE, I know it.

Hoping for our own Peanut said...

Im relieved you guys will try to get a second opinion. I think its the right move. I hope a new doc can give you a new sense of hope and get a plan of action together.

Kristy said...

I am so sorry you are going through all of this. I think you should reseach Dr. Coulam in Chicago. I am not sure how far that would be for you to travel. She specializes in failure to implant issue and recurrent miscarriages.

Brittney said...

I'm so sorry you're going through all of this. I hope you're able to find a different doctor who can give you all that you're looking for and more. I'll be continuing to pray or you and your dh. ((HUGS))

I have an award for you on my blog.

Mandy Peterson said...

So aggravating! I hate that you are going through that, and it sounds like breaking ties is exactly what you should do.

I've been thinking about you a lot lately, and was wondering if there was a way that I could reach out to you. My family started last Christmas raising money for people in need in lieu of Christmas gifts for each other. God worked so mightily through that, turning our $135 into over $3000 and changing our hearts to WANT to continue blessing others.

I was wondering if there was some way our family could help you, whether it's raising funds for another IVF round or for adoption or wherever the next step of your journey is. If you don't think it's necessary or are not interested, that's okay. But if you can think of any way that we could minister to you, please feel free to email me at

Amy said...

It seems like the RE already broke ties with you. Especially the trust ties. Still, I'm sorry to hear about that. I'm so glad that you pushed for the test to be done.
I gave you an award on my blog. Thank you for your encouragement and support!

Hillary said...

I'm so thankful you have peace to break ties with your RE. I'm sorry you even have to deal with this...but I hope a second opinion with an RE brings you some direction and hope.