Thursday, August 16, 2012

So, so boggy

During my pregnancy, I had a dream that I lost the baby. I remember being utterly unsurprised in my dream state and thinking, well, this had the lowest progesterone and HCG of any of my pregnancies, so yeah, this is no shocker that its over. I woke up, had a moment of disquiet, and dismissed the dream to my fears manifesting in my subconscious. After all, these 2 readings have proven to be very imperfect in predicting the fate of a pregnancy.

But my dream reasoning was probably dead on. Of all 3 of my pregnancies,this is has been the worst looking one and it ended the earliest too. 2 weeks have passed, and I still have no concrete idea why. I had them run a progesterone test after they discovered the loss, and it was interesting, my progesterone had dropped like a stone. It was around 25 ng/ml in the 15-21 DPO period. On the day of my loss, it was 11 ng/ml(!!), while my HCG was over 40,000.  You have to wonder, what came first, the chicken or the egg? Was my progesterone low because it was a bad. ie genetically abnormal pregnancy (those tend to have lower progesterone, though the correlation is not very good) or did my pregnancy end (partly) because of low progesterone?

I'm still waiting on the chromosmal analysis. Right now, my biggest fear is that they lose the sample, or can't test it. As long as I get an answer of what the embryo was, I'll be satisfied with that. Any day now, the doctor should call me.

I also got my bloodwork of my RPL panel in my hand, and I pored over every result, and I'm very glad I analysed it myself, because the doctor who was looking at it (who I had an RPL consultation with), was really not detail-oriented. AAARGGHH.

The doctor I spoke (not the one I consulted with) to said I had issues with 3 genes related to clotting issues. Not actually true-- i have semi issues with 2 of them.
This is how it goes
I'm actually normal for the anti-thrombin gene (very good news, the mutant variant confers pretty strong risk for various issues)
I'm heterozygous (ie have one copy) for the MTHFR C677T gene
I'm heterozygous for the PAI4G mutation- I'm 4G/5G (where 5G, I think, is the normal variant)

The immunological bloodwork should be taken with a giant grain of salt because yeah, the did not send to the best testing lab. Arghhhh. I asked my doctor why that was and he said, it was because 'the others are expensive'. At that point, I wanted to find a nice wall to bang my head against, I mean, why bother testing if you cannot trust the results?

So---I'm in grey zone territory for thrombophilias. This doctor (who according to his practice was 'aces' at treating RPL) gave the following verdict- I should try again,  preferably with clomid to improve egg quality (why do docs love clomid, and not femara, which has fewer side effects??) and once I got pregnant, add asprin, lovenox, Prednisone (10 mg, 2X/day) and progesterone to the mix. Basically, throw the empirical, basic RPL cocktail at me and see what happens.

Errm. Moving on from what that doctor (he was SUCH a name dropper, he just kept talking about his famous patients) thought- here is my biggest fear. There are 2 flavors of thrombophilias which can interfere with pregnancy-- maternal and fetal. If  both me and my donor are heterozygous(ie only one copy) for a bad version of the MTHFR or the PAI gene, any baby has a higher risk than either of us, because it could  get the bad copy from both of us and end up with much higher risk for developing clots. I asked the doctor when he thought fetal thrombophilias play out, and he thought it has a role in later (second and third trimester) pregnancy loss. Interestingly, all my losses have occurred after the fetus has developed a rudimentary blood circulation---so theoretically, fetal thrompbophilia could be in play. This issue would not, in theory, be fixed by using a surrogate, unless the surrogate was given lovenox as well.

To have a better idea of what is happening, I really want to talk to an RPL expert, even if just to brainstorm. Some of the best minds in the RPL field, are, as Adele pointed out in the comments section,  are in England, at St Marys. I can't go to England unfortunately. But ANY of you coming by this blog get to talk to anybody who is expert with RPL- can you ask about fetal thrombophilias-- when they think they play out? Btw, if any of you are heterozygous(ie, one copy) for thrombophilia-predisposing mutations(such as MTHFR C677T),  testing your husband for the same is a very good idea. Nobody wants to have a child that is homozygous (ie, 2 copies) for these mutations, that could predispose to a lot of health issues later. I wish I could frogmarch my donor to give some blood, but that, sadly is not an option. The only option I have is to test the embryos.

I know what I want to do- I want to do IVF. Then after we biospy that one blastomere, I want to expand the DNA so I can do a lot of testing with it, including running genetic tests for the MTHFR, PAI and anti-thrombin genes. This is going to be extremely technically and logistically challenging and is going to need a lot of money and initiative, but thankfully, money is the one commodity I do have to throw at this problem. After that-- I want to do surrogacy. There is a part of me that shudders at the thought of being pregnant again, I just don't ever want to go through a pregnancy, for so many reasons, though I most definitely want to be a mother. I don't trust my body anymore. I don't know if its immune issues or clotting issues, right now, its fair to say that with my history I AM higher risk for all the later term complications, such as placental abruption and IUGR and all that other good stuff. I can't keep gambling like this, not when I have an out. Even with this preset idea of what I want to do, its going to be an uphill task to figure out what I should do and to find a plan that everybody involved can make a degree of peace with.

In other news, I got done with work, I'm packing up to move back to India, and I'm really, shockingly fine, from a mental standpoint. There is a lot more to say there, but as of now, time is a commodity of which I am very short of.


  1. I admit the most of this post goes way over my head but I am glad you're doing alright and wish you a safe move home.

  2. Hmm, my post kind of relates to yours, but you are way more advanced.  Your plan to do IVF sounds good.  It allows so many more opportunities for screening and knowing what's going on.  I'm sad hearing about your dream.  I do believe our physical bodies communicate with our brains/consciousness and have seen this in myself and others.  But often dreams are just emotions/inner conflicts playing out too so it's not so reliable.  You sound like you're moving forward and I'm glad you're mentally doing well.  Thinking of you and sending energy and support for packing.  Hope those chromosomal results come in very soon.

  3. Like Tiara said, much of your post is too technical for me to understand, but its great that you know all this medical stuff and can really hold your Drs accountable.  Its good that you have a go forward plan and I wish you the best with your move.

  4. I can understand your fear of pregnancy.  I am already afraid to fail again.  I agree with Sunflower that I am glad you understand all the test results and can make sure the doctors take it seriously.  As for the donor, he might have been tested for at least part of these.  I know my embryo's sperm donor had lots of routine (for CCB) genetic tests which is how we knew he was heterozygous for the SMA-causing gene.  

  5. I work for a private medical insurer in the UK, and they provide a service called Second Medical Opinion, where people send in copies of all their test results, scans etc, and they get sent off to ‘one or more of the world’s leading experts in the field’ to be reviewed for a second opinion. The service is only available to policyholders, but it’s provided through a company called Advance Medical, who when you look at their website it looks like you might be able to pay for the service directly through them, even if you don’t have insurance that covers it. Not sure that you would get any choice over which experts would review your case, you’d probably be lucky if it got looked at by St Mary’s, but you never know.
    Also just wanted to say that a friend of mine had 3 early losses in a row (and this a few years after having 2 ectopics back-to-back, poor girl), and then was diagnosed with some kind of blood clotting disorder, then as soon as they got her on the medication (called Clexane over here but I’m guessing it’s similar to Lovenox etc) her next pregnancy was completely fine, a healthy boy at full term, and she then had another normal pregnancy a couple of years later on the same medication.  So I guess I’m just trying to say don’t give up on your body just yet, it could still be something quite simple that’s easily fixed.  I know everyone has to choose the path that’s right for them, but having finally had a child through IVF after 2 years of struggle, it always makes me sad to think of anyone missing out on the crazy and amazing experience that is pregnancy and childbirth.  Then again I know those things aren’t as important to some people as they are to others, so of course you have to make your own decision about what’s right for you.

  6. IVF with PGD would give you more information before a next pregnancy, and perhaps help you with the anxiety a next pregnancy would bring. Could you not have a phone consult with the people at St-Mary's? It sounds like it's really important for you to talk to the experts and there may be another way than showing up in the flesh.
    Wishing you well with your big transition. I hope being in the midst of your loving familiy will bring you much joy and peace.   

  7. Wow, I'm heterozygous for MTHFR (don't know which gene). LG was never tested for it but maybe he should be if we go back to treatments/suffer more losses in the future. We never really got a reason for losing our first pregnancy.

    It sounds like you have a plan. I'm hoping being back in India is comforting to you as you move forward. Will you stick with the same donor or consider another one?

  8. Dear Jay,

    I am impressed with the way you bounce back so quickly !

    I personally think you are over-reacting  about your being a MTHFR heterozygote. MTHFR gene mutations are fairly common; nearly half the population of
    the United States may be at least heterozygous for an MTHFR gene
    mutation ! Running these tests is a waste of resources as it provides no clinically useful information ( IMHO). Overtesting can be harmful because you tend to chase red herrings :)

    Your readers may find the non-technical review at useful