Meeting with the Genetics Counsellor

This meeting ended like my consults with doctors usually do-- with them telling me that I've already thought of every possibility and managed to test it all by myself. He looked at my 'normal' karyotype and said we could rerun it if I wanted (because one X chromosome looked a little shorter than the other) but most likely its nothing and such findings are common because of the way they do the tests.

But the one staggering thing to come out the meeting-- he told me that the fault was more likely to be the donors. My baby had Turners syndrome, one sex chromosome was missing. I had assumed that it was most likely that it had been the egg that came missing a chromosome. He informed me that in cases of Turner's syndrome, its more likely that it was the the sperm lacking the chromosome.

They assume this because a sperm lacking a chromosome is lighter, so it can swim faster than anybody else there and get to the egg first . So by this theory, monosomy is more likely to be a sperm error, while trisomy is more likely to be an egg error. If it really was a crappy sperm that  jumped my egg, then its just sheer, horrible, bloody bad luck.

People have often asked me whether my losses are happening because I'm doing IUI with frozen donor sperm and my answer has always been a very indignant negative. But now I have to wonder.

What is the advantage with natural conceptions? In a way, it is that the timing is often off. Intercourse may occur well before ovulation, and only the fittest sperm are still left swimming by the time the egg makes its appearance. In a perfectly timed IUI (where you just inject the sperm into the uterus instead of making them swim their way through a hostile vagina and through the cervix and then make them hang around waiting for the egg)  you are removing a lot of the negative selection process that allows only the fittest to survive, and just sometimes, you might end up paying for it

Still, this stuff is completely inconclusive. It very well might have been the egg (I was informed that with an X monosomy, 70% of the time its the sperm, 30% of the time its the egg).  It could still be PCOS messing up my eggs (likely explanation for both losses), it could have been thyroid issues responsible for my first loss and sheer bad luck the second time. OR--- it could be that both the thyroid and the turners are red herrings, that I have more than one big problem and there is another stealthy culprit we have no idea about just yet.

I wonder if I really have PCOS and should be on metformin.  I wonder if it would be a good idea to actually mess up the timing of the IUI a bit,  that is, inseminate the day I see surge and not 24 hours later, when ovulation is likely to occur?Or should I do an ICI? Worth the risk of a BFN? I wonder if I should be changing donors, though at this point there is no logical indication for that.

I have no idea what is the best route to take.  Despite the science and all the information I have (far, far more than the average person would in this position), the path forward is still unclear. I'm horribly aware that I'll have to take another leap of faith, knowing that another crash landing is highly possible. 

ARGH!!!!!!!!!!!!!!!!!

bloodwork part 1

The best idea I ever had was to start a blog during this process. When you get results back, you WANT to share, but who really is willing to listen? Nobody other than you guys and I love you all for it!

18 DPO beta- 1702 (last time was 2500 at 19 DPO, so sounds about the same)

See the  betabase link for that day.

The rest is horribly technical but I'm sad to say too many of the people reading will actually be able to interpret these values easily,  oh for those days of blissful ignorance.

TSH- 0.4!! (nosedived from 2.86- its quite a dive down, but I guess I'm not hyperthyroid yet)
T4- 10.5 (close to upper limit of the normal range)
Lupus anti-coagulant DRVVT test ratio is 1.07- the same down to the decimal point as last time 5 weeks ago! You are considered positive for Lupus anti-coagulant (scary stuff highly likely to kill your baby) if your ratio is 1.2 or above, from this lab.


If I were a betting woman, I'd say the cardiolipin IgG value will come back as the same, which will probably get me put on aspirin. God knows what any of this means anymore.

I told my mother I was pregnant (I can never keep anything from her long) and she was 'not surprised'. She kept telling me not to be negative- man, I have to say, the pressure to 'stay positive' is itself stress inducing.

Fear

I need to start this post with the confession that I am quite unable to give my babies cute nicknames, only wacky ones. Sorry, my little ones. My first baby got stick with the moniker 'Bighead' at the second ultrasound when I was utterly struck by how huge his head was compared to the rest of him. This new one- well read on.

This post is about all my darkest feelings. As I continue to feel more of this new pregnancy every day (nausea, heartburn, uterine cramps), there is a part of me that is happy and hopeful but there is this sick, dark place inside me waiting for the Sword of Damocles to drop again, for me to go to an ultrasound and find out its all over all over again.

A huge part of this fear is because I have no idea what went wrong. Often when babies are lost its a case of slow doubling or low betas, when chromosomal abnormalities are discovered or at least, strongly suspected. My last pregnancy was not like that. My first baby ( poor little Bighead) was a champion to start off with. His betas were off-the-charts, unbelievably good and they doubled perfectly. His chromosomes were beautifully normal.  You cannot ask for a better start to any pregnancy, and yet, he was dead probably at the 10 week mark. Everything suggests to him being fine, that it was something else that went wrong. How can you box at shadows?  I'm hopeful yes, but there also lives this horrible place inside of me which is just mentally steeling itself for the worst.  I cannot shake it off, no matter how I try. Its almost like a defense mechanism, that horrifying news will be better tolerated if its anticipated. That of course is a load of crock, nothing can soften the blow if it comes at you again.

All of this fear is made worse by the fact that they DID find something wrong with me. If its just thyroid, then that, I think can be easily dealt with.  But then there are also the anti-cardiolipin antibodies. I had my consult with the perinatologist, and the verdict (which I had also come to) is to retest for them. If the repeat value comes back even at the slightly elevated, neither-here-nor-there value,  they start me on aspirin. Now, all the studies suggest that aspirin by itself possibly is not enough in case there is a real clotting problem. But my levels are not high enough to justify heparin, and moreover, giving somebody heparin when they don't need it is inviting trouble, you can have a bleed beneath the placenta which can itself result in pregnancy loss or you could end up in a potentially dangerous situation yourself. I will give blood to test for TSH and the dreaded cardiolipin IgG value this week.

I just need to genuinely believe that this will work, that my new baby (named 'Turbulence' because of the fact that she is tiny but already causing quite a bit of it,) will be ok.  She, like her older brother, is a strong, healthy baby.  I NEED to believe that my body will allow her to make it..I just don't know how. The proof is in the pudding, and I haven't seen the darned thing yet!

So everybody, put your hands together and pray for 'Turbulence'!

I'm a gloom and doom kinda gal and....

I need a BIG rap on my knuckles for it! I've been an impatient and overanxious knucklehead. I've had my scary test results for over a week now (because I made them give it to me), but thanks to the inefficiencies in communication between my OB-GYN's office and my RE's office, have not had the official medical interpretation until today. The part that was driving me nuts was my cardiolipin antibody levels (slightly elevated, but nowhere near the big, scary danger zone) and the fact that I could not interpret my lupus anti-coagulant test results by myself, with no reference ranges. Its a complicated test, I I think even docs would have a hard time with that one. Btw- its called the 'Direct Russel Viper Venom test'- kinda cool.

Anyway, I finally got the verdict from my doctor- I don't have to worry about clotting issues!!! They will retest if I make them (and I will) but right now its nothing to worry about. Most people trust what their doctors say implicitly but with my training and my neither-here-nor-there knowledge of medicine and science, cannot help second guessing them, which can be both a good and a very bad thing.

I still have the anti-thyroid autoantibodies and I start synthyroid before pregnancy to see how I respond. Its quite amazing how we adjust to new realities. When I first found out about this, I was a mess (with guilt and fear) but now I'm shrugging it off.

Finally- its CD2 of my new cycle and looking at my day 1 and day 2 temps (low, low, low) I know I'm going to ovulate early this cycle(by day 15-16) and its probably going to be a pattern similar to the one I conceived and lost in. I had sworn I would avoid such a pattern again because I thought there was something wonky with it, but now I'm not so sure it had anything to do with the egg and I'm sick of waiting. Oh for a crystal ball!

A future of being poked...

and a *probably* high risk pregnancy is headed my way. Perinatologist, here I come.

Issue # 1 : Thyroid - I have anti-thyroid antibodies- in addition, my TSH was 2.86. For the thyroid savvy, that is still in normal range, but that is a bit higher that one would want it to be during a pregnancy. I'm going to need a fair bit of thyroid hormones and a LOT of blood tests to monitor hormone levels. And thyroid insufficiency is a funny thing- I remember one glaring thing from my pregnancy- I was so cold, so often. 3 days after my IUI, I was just folding clothes, I'd been fine all day and suddenly I was chilled to the bone, a trend that continued on and off throughout that shortlived pregnancy. I'd sleep with sweaters on, something I never ever did before.

Issue # 2: Possible autoimmune clotting disorders too. I got cardiolipin and lupus anticoagulant back- I'm just straddling the far boundary of normalcy for both and the scariest thing is it is documented that it can sometimes increase during pregnancy. So I'm looking forward to very regular blood tests in that area as well and immediate treatment in case the levels increase.

I'm really getting angry with the OB who managed me. She is a lovely person with an excellent bedside manner, but her reaction to everything is, oh, lets not test, these things just happen. I want a super aggressive perinatologist to go with my super aggressive RE- UCSD is supposed to have a very good one.

I'm so utterly glad all of this is coming out now, and not after I have had another loss, which was definitely possible had I listened to everybody around me and left all of this alone. I'm also so utterly grateful I can understand and process all these tests and jargon so easily, it would be so much more scary if that was not the case. Although I now have good doctors, its so useful to understand what is happening so you are not entirely at some MD's mercy.

But it might not be so bad. Possibly I might not need more managing other than the thyroid. Lets hope it stays at that. Otherwise- bring it on, heparin, aspirin, even steroids- I'm ready.

And after that brave last statement.. I'm rethinking Lovenox(that is the heparin injection), it has to be taken 1-2 times a day in the stomach?!?!? Which sadistic SOB dreamt that one up?!?! OH praying I don't become more autoimmune with time!

Subclinical Hypothyroidism?!?!?

My thyroid hormones (TSH and T4) test results are back- all still in normal range, when I clearly have anti-thyroid antibodies! Just tells you that if I had not run this test, I would have never known. If everything else (Lupus Anti-coagulant and anti-cardiolipin autoantibodies) come back as normal, then I guess I will be put on thyroid hormones during the next pregnancy, though managing it will be tricky.

The thing that is making me very nervous is that these anti-thyroid antibodies are known to go hand in hand with T cell dysfunction and other B cell dysfunctions too, in which case you have an immune system running amuck- VERY difficult to keep it from kungpao-ing your baby :(

Praying its not this, and its just this one isolated autoimmune issue. I get hypothyroidism from both sides of my family, so its logical that I might have this problem.

Just a note for all mommies to be- if you have a family history of hypothyroidism, maybe its worth getting this test run, because as I am clearly demonstrating, this problem might not show up if you just test for thyroid hormones.

Being kind to myself

Its been a few days of serious mental conflict. After first deciding that I'd go ahead with insemination this month, I realized I just couldn't. You cannot do something so potentially life-altering when your mind swings like a pendulum every 2 minutes. I don't know if this guy I'm interested in could feel the same way about me, but I've realized that if I later discover that it is indeed the case, it would be a pretty messed up situation. One more month should be enough to figure out how he feels. I honestly don't think he returns my feelings, but I need to rule out the possibility before proceeding.

Plus, I just want to have some fun. These past few months have been grueling mentally. I went from somebody who has never experienced death to losing a child (thank god only at the embryo stage) and then 2 days ago, my beloved labrador was put down because of kidney failure and arthritis. I'm having visions of my dog meeting my baby in heaven, and its pretty funny because I'm agnostic.

But, boy is there conflict. There is a part of me that is saying, enough punishment, time for a little respite and then there is the other part of me that desperately wants to try again, wants to be pregnant RIGHT AWAY, and more than anything, wants to find out if I am capable of actually sustaining a pregnancy.

But the one thing I do have a lot of, is time. I met my new RE- LOVE him! Had the most seriously painful ultrasound which helped determine that:
a) my uterus has normal structure (slightly arcuate but still ok, according to the doc). No fbroids or anything else problematic.
b)I have so many antral follicles (16 in each ovary!!) that he is having me tested for PCOS. I have no symptoms nor family history of PCOS so I'm only slightly nervous about this blood test.
c)He wants my miscarriage investigated further by running an autommune (anti-cardiolipin and lupus anti-coagulant) panel, because he says the fact that the chromosomes came up as normal is a little suspicious. Quite a change from all my other docs who looked at the normal karyotype result, shrugged and said, just try again!

So I'm being sensible, taking myself off to New Mexico this weekend instead of sitting around in town trying to keep myself away from the Doc's office. I'm getting blood tests done next week. And after that, until that next ovulation rolls up, I'm going to have FUN. Maybe a trip to Vegas with the new gang!