Estrogen and Factor V-Updated*

You have to read this if you've been dx with any type of clotting disorder.

As soon as I had Charlie, just moments after, I was asked something about his name and if we had a girl name picked out too. I said something to the effect that we would just use it in the future.  I wasn't confident we would have more children, I was confident we wanted them and we would try to.  Everyone in the room (and there are a lot more than you'd expect) was shocked I was interested in thinking about #2 so soon.  They joked no one speaks of #2 that soon.  I said, of course-#2, #3, etc and grinned.  My husband wasn't surprised.  He just laughed and shook his head and he likes to retell that story.

Somehow, I don't remember the exact conversation, it came up again with Anthony.  Again, I was quick to talk about wanting more children.  Again, the shock.  Again, my husbands' knowing smile.  God willing is always part of that statement; whether spoken allowed or not, it is implied.

IF is never far from my thoughts. That is a big difference between moms after IF and other moms. I never take for granted I will be able to have another child. Hopeful, yes. Confident, no. Around Christmas I realized that if we were going to have #3, an additional challenge stood in our way. At the time, it was an unkown, and I wanted to post once I knew a happy answer. But, so far, there isn't one. It continues to be a waiting game so I decided to post about it now, to inform and also to ask for prayers.

I probably visit the doctor too often, but I feel better safe than sorry.  The day after Christmas I went to the ER because I couldn't get into a doctor.  I had been sick with that awful strep like virus, but at night I was getting the horrible feeling my throat was swelling shut.  It probably wasn't, I knew, but just in case I wanted to be seen.  It was really creeping me out.  Well, my throat wasn't swelling, it was just all the junk running back and so thick (lovely), but I did learn something especially important.  As the PA was taking my history she said, you know with factor V you should never be on estrogen.  I replied that I was on estrogen to conceive both of my babies.  No, never again, she said.  She and her sister both had factor V.  Her sister died on estrogen, she told me; it made clots more likely and it was a clot that killed her. There is evidently  government website out there now to increase awareness.  You are 80 times more likely to develop a clot, she told me, on estrogen. Its along the same lines of why we are told not to smoke and be on the pill.  80 times is what estrogen always does I guess, but this is a bigger problem with those with any clotting issues.  Even though I just have one gene? Yes.  Even if I am on baby aspirin? Yes.  What about hcg I asked?  She didn't know.  What if this is just to get my level to where others already are, not higher?  Doesn't matter. 

Well, you can imagine I was in quite the hurry to call Dr. Hilgers.  Due to the crazy business of their office and the holidays and snow, etc., it wasn't quick either (though I spoke to a new nurse, so they are hiring more people to handle the increased load).  Basically I wasn't told much.  Yes, they agreed, I am not to be on estrogen.  The nurse asked if they knew I had factor V, but she saw it in my chart before I could answer.  Clearly they had dropped the ball.  Everyone makes mistakes.  No harm, no foul.  I am okay.  I have two babies.  But now what?  She said I could still be on hcg.  What if my estrogen is still low?  Well, we will cross that bridge when we come to it.  It may not be.  Hcg was enough for my peak plus 7 est level to be fine for my first two failed pregnancies (that isn't why they failed).  But after my second miscarriage, it bottomed out even on hcg and it took 2mg of estrogen on top of the hcg post peak to bring my level back up to normal range.  So maybe it will go up enough with the hcg this time.  One can hope, even though it didn't go up enough on hcg alone after Charlie.  But if it doesn't, I didn't get any sort of plan of action revealed to me.  How important is the post peak estrogen level in getting and maintaining a pregnancy?  No real answer was given for this.  I am not much more knowledgable than I was in the ER.  

The next steps given were ones I am intimately familiar with already.  Wait for my cycle to return.  Get a peak plus 7.  We will medicate based on this.  The soonest I can try is the third cycle.  First cycle get a peak plus 7 level.  Second cycle medicate based on tests and retest.  Third cycle try and continue the peak plus 7 levels monthly as well as the cycle reviews until/if pregnancy is achieved.  With Charlie, I nursed a year even though I faded way back after 9 months due to 5 bouts of mastitis severely affecting my supply.  Despite this, I didn't have my cycle return until he was 13 months.  (AJ was conceived on the first cycle we were allowed to try -the fourth cycle was what we were told that time).  So, it may be another 13 months of waiting.  But maybe not.  I guess the first baby doesn't indicate the cycle will return at the same time.  Still, it could definitely be awhile.

What to do in the meantime?  What can I do except wait.  Pray.  Trust.  Enjoy my two beautiful children. 
TCIE or Dr. Gianna, if you are reading and know the answer to my question-how important is post peak estrogen to a newly conceived baby...and are there alternatives one can take in addition to hcg to raise the post peak estrogen without increasing my clotting risk...?

***UPDATE I went and saw my ob again recently (told you I visit the doc a lot!)  The bleeding was still going on at 12 weeks. Of course, as soon I made the appt (Murphy's law), it stopped, but I didn't dare cancel it.  Turns out I passed another nickel sized clot and that was probably why I was still spotting.  After that I literally could feel my uterus contract a few days and now all is well.  FINALLY.  Except the freaking yeast infection I got from the mastitis antibiotics.  Wow, tangent. Sorry. (I clearly write like I talk and I appreciate you putting up with all my typos, etc.  I know if you do something, you should take the time to do it well, but right now taht would mean not at all and I can't imagine that right now)  Anyway, visit the ob/gyn and mentnion the estrogen thing.  He says since I am a) one gene not two and b) I wasn't on much estrogen and c) I wasn't on it many days or many cycles, he would feel comfortable putting me on it to conceive if needed.  He said it was more like estrogen therapy for menopausal women or something that would be too much. Hmmm.  He is very pro life awesome Catholic man who trained under Dr. Hilgers for a week so far and is very new to Napro.  I am wondering, from his response, if Dr. H would have knowingly kept me on it thinking there wasn't much risked until I called and said "is it true there is this risk, etc".  I mean, it seems like a liability if he kept me on it after that right?  Or is their normal protocol not to?  It seems news to the nurse, but then again, it seemed news to all of them I was factor V despite my dx in the chart.  Anyway, I told dh and he is such a numbers man, he wanted to know what kind of risk we are talking about.  It is hard for him, a CPA, to make a decision without facts.  Whereas I am thinking, okay, I will go on it, but not for more than three cycles :)  Man, what we'd do for those babies.  Is that dumb?  I mean, I want to be around for the babies I already have!  I guess that is where the numbers come in...

My head is spinning.  It is a long time to wait with the unknown.  I am glad to have the info though, and I think it is important to share it with anyone who has a clotting dx.  I have two sisters with the dx-one threw a blood clot in her lung 8 months pregnant and the other (though not officially dx) had a 2 inch clot as a result of an IV.  My mom almost died of DIC (related?) where her blood wouldn't clot and she almost bled out during a D&C for a baby that passed at 5 months, and my mom's side has some crazy clotting issue we all tested neg for but I can't recall the name (very serious though).  I am glad to pass this information on to my family and to you, my friends, in case it is helpful.  I am sorry if it puts any stress on you like it did me, but I feel knowledge is power, even if it is sucky knowledge.
And sort of off topic (but aren't I always?)...I think there are a lot of things unique to IFers, both before and even after they have children.  Once a part of you, always apart of you.  That is why I am so grateful for this community.  We have fellow Catholics to relate to, to pray for us, to give us hope, understanding, and compassion.  I appreciate all of those that take the time to read my blog.  I know that time is a comodity for sure, and I especially appreciate those with IF actively ttc that are still able to read given the content is very mother focused at this point.  I don't want to apologize, it is where I am at right now, but I am grateful that you all can be truly happy for me and I can provide hope to you on your journey.  I continue to read as many blogs as I can.  It is entirely random who I read though, as I can't stand to shorten my blogroll which is already too short in my mind.  I get on, read the most recent at the time I am on until my time is up, and that is how it goes.  I often read but don't comment, but know that I am reading and doing the best I can.  I appreciate each and every one of you, and love to stay updated on your lives.  I continue to pray for you intentions.  Please pray for mine- that I can patiently wait, and that I won't need anything to conceive that I am not allowed to take.  


Anonymous said...

Hi there - Andrea Starosciak here. I would be interested to know if the clotting factor is with both 'real' estrogen (e.g., Estrace) or with fake estrogen (the kind that is in the bc pill)...could make a difference!

lifecapitalIF said...

Thanks so much for posting...I have the Factor V gene as well, but hadn't heard anything about the warning against using estrogen. Will be sure to bring it up with my new Doc!

Tridentine Wife said...

Oh gosh, I'm sorry that you had to find out this news but also glad you did receive the information to save your life. I hope something helps and they can figure out a new plan for you.

Katie @ Persevere in Prayer said...

I've never heard of Factor V before. That sounds so scary! Prayers (as always!) that you can get that figured out.

JellyBelly said...

My Napro doc didn't want to test me for clotting disorders. After reading this I need to be more pushy!

Jasmine said...

Hey... I'm so sorry you are going through this. I do know that even with medicating with E in the post peak phase, my E levels wouldn't rise until my adrenals were healthier. At the time this was accomplished through acupuncture, etc. for adrenal health. Dr. H didn't start putting out his adrenal stuff until more recently. But just because you may not be a candidate for cortisol doesn't mean that there aren't things you can do to support your adrenals. Adrenals also produce small amounts estradiol, and actually may be responsible for a portion of the E of in the luteal phase. Makes sense to me why my E levels went up after my adrenals were healthier.

Also I don't know if this applies to you, but I saw it work with a client with low E levels in luteal phase unresponsive to HCG. After her endo was cleared up through surgery and PMS improved from HCG, etc.; she had read, and I had read about full fat dairy with IF and improvement of ovulation. She tried this next, E went up, and she conceived. Pretty cool! Not saying it is a magic bullet, but may be part of the equation. I also saw the full fat dairy thing in Dr. B's presentation from the AAFCP 2010 conference. Pretty interesting. So women with low estrogen eat your full fat ice cream, whole milk, and cream on top yogurt...yum. Assuming no dairy intolerance, might as well, IF is rough enough. Might as well indulge don't you think? Let me know if you want references.

Little JoAnn said...

Great post. So true.