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.

Back from the Andrologist

The long awaited, long overdue andrology appointment for Mr. Hammer was yesterday.  We were actually concerned it wouldn't happen because a snow storm came through the day before.  Since we were going to a satellite clinic where both us and the Dr would have to travel we had reason to be concerned.  But the storm was not as bad as predicted and the snow quickly melted in the midday sun.  We did make sure to leave earlier than planned and had no problem getting there. 

We had been asked to complete a very extensive health history for Hammer which included the history of infertility on his father's side.  And I also brought copies of every SA Hammer had ever had done by our RE plus the DNA fragmentation results and the list of supplements he is taking.  I have to admit that I was nervous the Dr would look at how Hammer's SAs had improved, dismiss the DNA test and laugh us out of the clinic.  When we arrived at the clinic we did not have to wait at all and Hammer was immediately weighed and we were taken into an exam room.  Once in there we did wait nearly a half hour before the Dr came in.  Hammer began to get increasingly more nervous but he never complained considering everything I had already been through, this was very minor.  Once the Dr came in he apologized and explained that there was a lot of information to review and that Hammer was in a small but 'elite' group of men vying for the most SAs ever performed.  Lucky us.

I'll just say it now, this appointment was everything that we prayed it would be.  For the first time in a long time somebody took us seriously.  He even created an excel sheet timeline (A man after my own type-A heart!) of each SA and had us fill in when the various supplements were added.  He said that from where we were at right now based upon the most recent two SAs everything was finally looking normal and he felt we were on the right track.  He reviewed the supplements and was very pleased with every thing Hammer was taking and said it was exactly what he would have prescribed (yea!)  He did not think anything else was necessary which I was glad to hear. 

Then came the part Hammer was dreading; the physical exam.  But the results were good as well.  There is a small spot on the left side that he'd like to get an ultrasound of but said it very well could be a benign cyst.  He prefers to be thorough and still would like to get it looked at just in case especially with our long history of infertility.  So we'll be getting that scheduled in the next few weeks.  Hammer will also get his testosterone and estrodiol levels tested and if they are off he will be medicaid as appropriate.

Finally he discussed our DNA results which he agreed was a major problem.  What vindication we felt after having our current RE tell us he "didn't believe in it."  He confirmed that at our level it would not only prevent creation of a healthy embryo but would lead to early miscarriage.  The fact that we had a healthy fetus this last time was a good sign that we are figuring things out.  Of course if my body was involved in the loss of our last pregnancy then it does give us hope to know that we really might be getting closer.  He is also going to have us do a repeat DNA test in March after we've done a few lifestyle changes i.e. get that darn laptop off you lap like I've been telling you for the past 3 1/2 years *sigh*  And also because I discovered that while we were in Marco Island, FL Hammer sat in the hot tub so the Dr wants to make sure that we've had 3 months of supplements post 3 months from the hot tube incident of 2010.  He also confirmed that 'cleaning the pipes out' before the test would be helpful except instead of seven days he wants ten days, abstain one day and then provide the test sample.  When we told him we did about 6 days prior to our most recent IVF he was very encouraging about the benefits of that technique for our success.

We left there so encouraged and hopeful.  I wish I would have demanded a referral the minute we got the first DNA test results.  But in reality we would have likely ended up going to the super old local guy and not this one.  I'm so glad we chose this Dr.  and both Hammer and I agree it was not only a great decision but we would refer anyone we knew to him in a heartbeat.  He took so much time with us, listened to us, made us feel so comfortable, was so professional and knowledgeable and we haven't had that sort of treatment in a long time.

So the plan:

• Ultrasound of the left side 'spot'

• Blood work for testosterone and estrodiol

• Continue vitamins and lifestyle changes i.e. laptop

• Based upon the results of the blood test we'll do a repeat DNA test in March or early April with the 10 day; abstain 1 day; test sample 'technique'

If our results come back close to or in the normal range then he would have us do the 10-day technique for our next fertility treatment.  Of course Hammer and I need to talk about that part.  Ever since Hammer found out that our baby was healthy he's pulled back from adoption.  It was totally unexpected so honestly I'm not sure what this means quite yet but we're just taking this one step at a time.  This coming Tuesday we'll learn about the results of my labs.

I am my best advocate

So after some thought, I did not get my blood drawn on Saturday.  Instead, I waited till Monday and requested that they add in the test for MTHFR.  Which they did.  So later that afternoon I had 5 vials of blood drawn; one for each test.  We'll have our appointment to get the results on 1/25 and maybe we'll have some answers.

Completion

Today AF arrived which signaled the completion of our miscarriage. Really everything with the D&C was text book. I barely bled the day of the procedure, had no bleeding for 20 days after the surgery and took about 5 weeks for AF to arrive. I suppose if you have to go through one this would be the best outcome.

I also got my list of additional blood tests that I will have drawn tomorrow:

• factor V (Activated Protein C Resistance) - treatment = heparin or aspirin; may need Foligard if due to high homocystine levels

• antithrombin III (AT III) - treatment = heparin

• protein S (normal is greater than 60% non pregnant, greater than 35% pregnant; If positive retest for free and total values) - treatment = heparin

• factor II (Prothrombin) - treatment = heparin

So at our next appointment we'll get those results as well as for the other two tests for anticardiolipin or lupus anticoagulant.

I am curious why he is not testing for the following:

Protein C - recommended to be tested along with protein S
Fibrinogen
Factor XIII
fibrinolysis (PAI-1)
thrombosis (Human Platelet Antigen-1)
Methylenetetrahydrofolate reductase (MTHFR) gene

I know that I've read they have been associated with 2nd and 3rd trimester loss but I have also heard that a high number of people have MTHFR and that if it is associated with another of the clotting tests that it's a bigger problem. Hmmmmm.

Thank you for all your kind comments and those that shared your stories. It's been a great encouragement. And let me clarify that when I say, "I'm to blame" it's more a wording rather than a negative thought I have about myself. So no stinkin thinkin is going on :)

D&C Results Are In

We just got the results of the D&C. There was NOTHING wrong with our baby.


Of all the results I prepared myself for this was the one I feared. Strange really since it should give us some comfort and joy to know that we can make healthy babies. But now I have to deal with what caused our baby to die. Was it my body? Or worse, was it because of a lack of progesterone because they had told me to stop giving it? I have literally being avoiding this possibility because I have been afraid to let my mind wander down such a dark path of anger and blame if I didn’t have any proof. But now I’m not sure what to think. I am getting more blood drawn for additional tests to see if for any reason my body rejected the baby. Until I get these results I’m still going to withhold my judgment for my own mental health. I still need to recover emotionally from this loss. I should know in 2 weeks if I am to blame or our clinic.