Friday, January 28, 2011

A fact and speculation filled science post

On Vitamin D supplementation : how much is enough?

Two weeks after my missed miscarriage discovery and subsequent D&C, almost by accident and as a decided afterthought, I ordered a vitamin D test on myself.

Much to my surprise, I was deficient---anything less than 20 ng/ml is considered 'deficient', while if your blood levels are below 10 ng/ml then you are reaa-aahllly in trouble. I know people who have had bouts of frozen shoulder and some other not-so-nice musculo-skeletal issues when in this state.

25(OH)D Blood test results
Vitamin D Status
ng/ml nmol/L
Severely Deficient 0-10 0-25
Deficient 11-20 26-50
Low-normal 21-32 51-81
Normal 33-49 82-124
Optimum 50-65 125-163
High, but not toxic 66-100 164-250
Toxicity possible above 100 above 250
Since then I've been on massive supplementation- 60,000 IU/week first for 2 weeks. Then I checked blood levels, and they had shot up to an impressive 70 ng/ml.  I then dropped my dose to 4000 IU/day for the next month. This is 10 times the recommended daily doseOne month later, I checked vitamin D levels again, and I'm only at 35 ng/ml.  The lab report states that to be considered in the healthy state, you need to be above 32 ng/ml, with the range being 32-100.

Its shocking to me, that despite having taken so much Vitamin D --a grand total of  over 200,000 IU in about 5 weeks, over 15 times the daily recommended dose, I'm JUST over the threshold for being sufficient and am still on the low end of the normal spectrum!

On Vitamin D and estrogen

It is my theory that my first pregnancy probably sucked up quite a bit of my vitamin D reserve. Interestingly, in the cycles following the end of my first pregnancy, I noticed something new and alarming.

I use the ClearBlue easy fertility monitor, that examines two hormones, estrogen and luetinizing hormone(LH).  My usual pattern was that I had 3-5 days of 'high' fertility(= high estrogen) before going on to 'peak' fertility(= high estrogen accompanied by a LH surge).  The alarming part was that in the two cycles following the end of my first pregnancy,  my days of high fertility had dropped off sharply, from 3-5 days to a stingy one day.  This did not seem good; high estrogen before you surge is pretty important for optimum egg maturation, a good lining, etc. Usually, you could set your clock on the happenings in my reproductive system, they are that spookily similar from cycle to cycle, so any change, especially one so drastic was jaw-droppingly strange.

I'm in a new cycle now. I'm on CD14, putting me 6 days away from ovulation. I used the fertility monitor this morning- I'm already on 'high fertility ie my estrogen is already high. If I ovulate on the 20 day as usual, that would give me 6 days of high estrogen at least!

Has there been any big change in my physiology ? The only think I can think of is the drastic change in my vitamin D levels. I have no concrete thing linking the two. I did my usual literature search and I could fine one study suggesting that vitamin D is involved in estrogen biosynthesis, atleast in mice.

I have no idea if vitamin D deficiency can effect estrogen production-all I have to go on is that when my vitamin D levels possibly fell a little, my days of high estrogen decreased. When I increased my vitamin D blood levels, coincidentally my estrogen production has seemingly increased. Sure as hell not enough to make any sort of case about anything, but documenting it here cannot hurt.

Unlike this speculation about vitamin D and estrogen, one thing seems fairly certain though-  vitamin D could be involved in implantation. I've talked about it my 'Science of infertility' section and yesterday my RE just showed me another study backing this theory up. Everybody having issues in this department, or even suffering from general, unexplained infertility- please get this checked out. If your insurance does not cover it, it would be worth getting it tested out of pocket.

Tuesday, January 25, 2011

On the universe that does not give a damn and the resolution of loss

Horrible things have happened to me this year, and equally bad, or worse things have happened to other people I know. Chemical pregnancies. Miscarriages. Still births. I know of a couple whose two year old baby died, apparently, of SIDS. When such things happen, a lot of people can start losing another really important thing they possess, faith in a benevolent god. Luckily or unluckily, I've never had this to lose.

I regard religion as an institution created by man. Though I'll always be unsure as to whether 'god' exists or more to the point, how to define 'god',  I've always firmly rejected the view that such a supreme power is somebody made in man's image, who thinks like a man and hence experiences the same spectrum of same emotions we do.  I can say that I believe, confidently, that whatever 'god' is,  that entity is above emotions like benevolence or the opposite. Good things happen to people, bad-to-horrific-to-unimaginable things happen to a few and the wheel of life keeps spinning with universe/god not stopping to consider either the miracles or the tragedies. Entire species live and die, wars happen, genocide happens, people fall in love, heroic acts of selflessness occur, serial killers practice their craft, all while 'god' just lets the wheel spin.

But even if one is in agreement with such a philosophy (most people are not), how do you reconcile yourself to personal tragedy?  A line from a book I recently read stuck in my brain and is the inspiration for this post-- It went something like this 'Given enough time, does not every act of destruction ultimately turn into an act of creation?' Although this was a justification offered by the chief bad guy in the book, if you zoom out and look at chains of events over long periods of time, this could, in many cases, be true.

The horrible things that happen to us, like everything else, have butterfly effects- they set in motion a new chain of events, and if you wait long enough, something good might emerge from that new train of being. Then when you look at the good thing that happened to you (or somebody else), and weigh it against the tragedy that occurred before, what can you say?

Let me give the illustration of something I am personally involved with. I love my donor. He is open ID, and when you listen to his audio interview, you know that unlike the average sperm donor, he genuinely cares for any resulting children. His message to them is so darned nice and heartfelt. In his audio interview he states that he is a donor because of his wife- she cannot have children because she was in a car accident that damaged her ovaries and uterus.  He decided to donate because they could not have children, and today 3 children and 2 more on the way exist because of those donations. I've always been so struck by the fact that had that horrific, life-altering accident not happened to that poor woman, none of these babies would be. What can you say, really?

I've lost 2 babies, 2  precious promises that were never realized.  Even now, sometimes I wake up and cannot believe what has happened to me.  Other days I cannot  believe that I am so cursed so as to have to live through this while 95% of the population blithely sails through this process. Although I'm coping pretty well,  the sadness never goes away completely. But already, I can see the ripple effects of what happened to me starting up. God knows where they will lead, I'm just sitting here waiting. So yes, creation can be born from destruction, but when the destruction happens, words cannot begin to describe how awful it is.

I read something this morning that made me burst into tears and I'm so sad and angry...go here to express sympathy.

Wednesday, January 19, 2011

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. 


Monday, January 17, 2011

So fragile..

Four months ago, my parents rescued a tiny kitten from certain calamity. From a life on the streets where she would have probably lasted a few more days at best, this little thing went to living like a princess, cossetted by the entire family and our 2 dogs, who are very nurturing, loving creatures. However this kitten liked to live dangerously. It would  always 'escape' from our house for a few hours, managing to return unscathed. This week her luck ran out. She went up to a gang of stray dogs (being entirely unafraid because she lived with our pooches). They attacked her and would have killed her, if not for a neighbor who rescued her and brought her in.  She seemed physically fine, other than being in severe shock. She did not eat or and barely moved for 2 days. On the 3rd day, we thought she was turning a corner and were so relieved. Then yesterday, my mom told me that she just started mewling and crying and just died. Bloodwork revealed signs that she had probably had a severe heart attack when the dogs attacked.

She had so much personality and life and guts, despite being so tiny, I cannot believe she is gone.We had her for such a short time, I only spent a month with her but she inspired love, she was just so full of life. Before June of 2010, I had personally never been acquainted, in any way, with death.  Then came the loss of my first baby, then our beloved Labrador (she was 10 years old), then my second baby, and now this completely unexpected death.  I've received a crash course in how very fragile life can be and it is a horribly disconcerting feeling.

Although we really are emotionally strong, I'm also realizing how deep our capacity for hurt is. Being so darned vulnerable sucks. I cannot do anything about it, I just pray the grim reaper is done with me for a long, long time.

Wednesday, January 12, 2011

The WTF consults

I finally get  WTF conversations with my doctors this week. Although I don't think I'll learn anything new, I'm still a little excited. I have a phone consult with the SD RE tomorrow (saving me the cost of a walk-in consult, 300 $$ for a conversation seems very wasteful to me).  I have to say, Reproductive Partners Medical Group ROCKS. Their only bottom line is to help the patient and their staff is very dedicated. If anybody ever needs an RE in San Diego, go there!

The prime suspect, is of course PCOS and the only concrete thing likely to come out my conversations with the RE is WHEN I could start metformin.  I'm really waiting to see if the polycystic appearance of my ovaries changes after, that will be the biggest clue as to whether this really had been the issue.

But I'm really nervous that there could be something big that we are missing, and we'll go 'eureka!' after this horror unfolds a 3rd time.   But I've tried to cover every base:

Genetics: I have an appointment with a counselor next week. Hopefully by then, I have my microarray (mine and babies) back, and there will be somebody to interpret all those reams of data. My karyotyping is 'normal' but that is a pretty darned crude test, I could swear one of my X chromosomes looked shorter than the other, bu the lab pronounced it as 'apparently normal'  ('apparently' being the key word here).

Thrombophilias:  Factor V leiden and MTHFR are the 2 players. This is a good link on the topic.  There can be 2 ways to look at this, look at homocysteine levels, or dive into the complicated and confusing genetic typing. My fasting homocysteine levels (ordered in India, the land of cheap tests, by yours truly) came back nice and low, and hence not a worry.

Autoimmunity: Would be very surprised if this had been the issue. I've also mentioned it on the 'Science of Infertility' page, but there are some fascinating links between Vitamin D deficiency and immune problems in pregnancy. Since I've got my Vitamin D3 nice and high, my immune system should be even better behaved than in the past.

I'm doing everything I possibly can, using every bit of ingenuity and cunning I possess to make sure this does not happen again. But this is a ridiculously complex system we know very little about, its easy to miss something.

But science aside, there is that other thing I believe in, predestiny, in that all souls coming into this world have a predestined path that will be followed no matter what.  By this theory, if a soul is meant to be born to you, or come to you in some other way no power on earth will be able to stop it. Even if it is against all scientific odds, it will happen if its supposed to.   But, oh so cruelly, if its the wrong time, or if that precious soul is not meant for you, even though everything is in your favor, it might even start but it will never finish.   This obscure philosophy has been invaluable because it allowed me to accept the horrible things that have happened to me. But I pray so hard that it will not be needed in the future, I'm so tired of coping. Please, please, please god. (And I'm pretty firmly agnostic)..hah.

Monday, January 10, 2011

Infertiles are from Mars ..(with update)

...while the rest of the world is from Venus.  Its like once you enter the room with the 'infertility' tag, and start talking about it,  the rest of the world ceases to understand what you are about.  Labels like 'obsessive' and 'melodramatic' start getting applied to you and nobody understands how you can spend so much time preoccupied with this process.

I just got into a massive fight with my brother, and it started with me telling him how these blogs get readership from all over the world. He called it 'creepy' and chided me for putting all this information out there where anybody can read it,and why was I being so careless? I saw red instantly.   I tore into him for  for talking thoughtlessly about something he has no clue about (ie, this blog, which he has spent 5 minutes on many months ago), for not willing to listen to the minutiae of this process (he changes the subject within 2 minutes, most people IRL do), and yet, criticizing me for finding support where I can.  He promptly took my comments to mean that I was saying he is not supportive (not so; he will do all that is practically necessary, even at great cost to himself, to help me in this process) and moved into injured party mode.  I tried to explain to him that I need somebody to listen to me talk about the details and nobody in real life is willing to do so.

Now, my brother is a really amazing, wonderful human being I'm really proud of BUT at times he can really resemble an OX in his stubbornness (he accuses me of the same, BTW).  At this point, he said I was obsessive and melodramatic and said all I ever do is talk about this and of course people would not want to hear more. The last bit is not true. I would love to talk about this about 20 % of the time but realize my audience is looking impatient and squirmy and trying to change the topic after 1 minute of conversation, so I back off.

I am so ANGRY right now. I spend most of my time trying not to talk about this, except with immediate family (where the pressure valves have released some steam).  I've managed to sound ok to friends and extended family the day AFTER my D & Cs, so they would not suspect anything is up.  I've managed to make jokes the day after I found out my babies had died so nobody would have a clue that my world just fell apart.  To be accused of all of this from my brother is really too much. As a consequence, we are going to have one of our more extended fights. No worries, we will go back to normal in a while, we have had this Tom and Jerry thing going since our childhood and its not done our relationship any harm. We fight...get hugely mad and either talk it out/ forget all about it within a few days.

But right now, I'm just furious. All I want is to be able to blog in peace, so I can pour my heart out to the only people who can possibly understand, and more importantly, are willing to listen...not too much to ask for!!!!!!!!!

I'm also just mad at the rest of the world. What is wrong with them?!?! When I can spend 30 minutes talking to friends about what is important to them (for example the process of home buying, something I have no interest in at present) why do they never reciprocate with what is important for me?  Its something I thought I had accepted as a fact a while ago, but right now I just want to punch a wall.

Update: My parents, as usual, played peacemakers. They've had plenty of practice at it along the way, being always older and wiser than the two of us hotheads.  Anyway, they apologized (and meant it).  My brother apologized (through gritted teeth) so it did not make me feel one bit better. I'm in the process of learning a valuable, but difficult lesson here; to pursue this journey silently. I should absolutely shut up about diagnosis, treatments, plans, news, worries- anything I want to yammer on about in the 2 minutes before other people's lack of participation makes me shut up.  Because those 2 minutes, apparently, cost me dearly.

Need advice

Quick drive-by post here.  I will be moving to NYC in a month.  I need to pick a new RE there. One very logical choice is Dr. Liccardi (the guy who writes 'The infertility blog') at NYU.

I know that quite a few people from NYC have to come by here...have you been a patient with Dr. Liccardi, and if so, what is your experience?  Also,  do you know of any RE's  specializing in recurrent pregnancy loss who you would highly recommend?

Muchas Gracias in advance!

Saturday, January 8, 2011

Out of the funk!

After 2 days of utter misery (I was bursting into tears at the craziest things), I'm back to my normal even keel and I could kiss the ground in gratitude. I'm still  far way away from being anything close to happy though.  I just miss being happy, its something all of us are entitled to, but its gone from so many lives on the blogsphere now. A lot of us see life in greyscale.  For me, some of the colors are starting to seep back in, but I want glorious technicolor and I'm not going to get it for a while.

Since its going to take about 1 year to wrap up my life here to return to India, I have to take that much time off from babymaking. My mom requested only one thing from me; in this one year, live life instead of obsessively pouring over this process. I'm working on it, but yet, here I am home with my blog on a Saturday night while my friends are getting dinner and a movie. But there is a reason for that...I want to see as little as possible of one of them.

From my current group of friends, only 2 people know about the pregnancies and the losses. One of them is 33, kind of single and is a party animal. She has told me repeatedly that she does not 'get' what I'm doing. According to her I should be out looking for a guy (while having oodles of 'fun', her style) and not attempt such madness as in trying to conceive as a single person.   On the day I found out my baby had died, both she and the other girl forcibly came over to 'comfort' me. I made the mistake of talking about what was my next step, and she looks at me like I'm crazy and says, 'you should wait, find a guy, and do this naturally', like it was the unnaturalness of  this process that was killing my children. That was the final straw, I knew I never wanted to see her again. Unfortunately, both of us are part of a really large group that hangs out all the time, and I quite like everybody else there. This is where I become grateful for the workings of fate.  In October, I found out I *had* to move to NYC.  I loathed the idea at the start. Over time, I got used to it and even a little excited. Now I'm happy, it offers me an out from this uncomfortable situation.  Maybe somethings in life DO work out for the best!

I'll be seeing this person tomorrow. There is really nobody to be angry with when something like this happens, though you really wish you could find a target to rage at. This woman, with her arrogance, presumption and ignorance is the only person I can be comfortably angry at, although its certainly not her fault (or anybody else's) that my babies died.  But on the surface, I have to be civil, UGH.  Thank god its only for 3 more weeks!

Thursday, January 6, 2011

A very dark outpouring

Blue-that been my mood for the past 2 days.   It is not terribly surprising.  Immediately following my loss, I boarded a plane back home to India.  In the following month, given the circumstances, my emotional recovery could only have been described as superlative.  It was so because I was surrounded by the people who loved me and I was never really alone.  Now I'm back in USA, at home, except it does not feel like home anymore.  I've lived alone for the past 8 years and have been fine by myself.  I've had the fun social life (I still do, for what its worth) and I was completely self-contained, happy in the quietness that is part and parcel of living alone. But  for the first time in my life, that quietness seems suffocating.  I think its just a combination of vulnerability and sadness that should quickly pass, buts its tough going sometimes. Yesterday to get my mind off things,  I called up friends I'd been meaning to catch up with for a while, and they told me they were 3 months into an 'oops' pregnancy. Now, these people are amazing and I'm really happy for them, but of course, given my mood yesterday, that really reinforced the sadness and victimization I was feeling. I really did not need that, I can only marvel at a fate sneaky enough to make me call them on the one day that even a hallmark card could get me bawling.

I'm very good at recognizing my own limits, and the one thing I cannot EVER do again, is go through pregnancy while being alone.  It would be really nice if I suddenly met somebody tomorrow and we got to navigate this choppy sea together, but I'm not holding my breath.  So I have to wait until I'm about 2 months away from wrapping up my life (temporarily) in the US and I'm ready to make that short term move back to India. Only then can I try again.

I'm going to be candid in saying I am now utterly petrified of pregnancy. Even when I get past the first trimester, I'm going to be thinking of all the other horrible things that can go wrong.  A big part of this is because of the Turners syndrome diagnosis. When you know beyond a doubt that you have produced one bad egg, you keep thinking about what if the next time the baby actually makes it through to 5 months, and THEN you find out? I'm going to need help keeping sane the next time, obviously. Several months ago, my brother had asked my why I don't come back and go through pregnancy in India and I had unequivocally dismissed the idea. Pollution, mosquitoes, heat, monsoons...who needs that while pregnant? Moreover, I had wanted my child to be born in America so there would be fewer immigration issues to work out. Now, those concerns seem laughable, and of course, famous last words.

If you have read this far, thank you. This post is mostly like lancing a boil...I'm praying that it does not refill, I don't want to keep feeling like this.

Sunday, January 2, 2011

Goodbye 2010

I’m writing this post out in midair to San Diego. Very reluctantly, on New Year’s Eve, I packed up and left the comfortable cocoon that is my parents’ home. I’ve spent a wonderful month there, I spent the days rolling on the floor with my 2 dogs, playing with our newly acquired cat (pictures coming soon), having long conversations with my parents and brothers and getting ridiculously pampered. This past month has saved me, no doubts there. We all need support structures in trying periods and mine unfortunately is half a world away, but once I got to it, it was pretty darned wonderful.

I entered into 2010 a girl who had never experienced loss of any sort, as somebody starting out on this journey with stars in her eyes.  I’ve been pregnant almost half of this year, and all I have to show for it is 2 D&Cs, one yeast infection and 3 karyotyping results (my 2 babies and mine).  I could hate this year. Loathe it. Be angry and miserable when I remember it.  But I don’t feel that.   I actually don’t know how I’d describe 2010 one day in the future, but I’m waiting to find out.

 I’ve had numerous philosophical conversations with my mom . One theme we keep revisiting, is that as souls go through their various lifetimes, they can evolve (or devolve, if you think about somebody like Ted Bundy). Obviously, it is only suffering and challenges that evolve the soul, not the wonderful, easy times.  I don’t want to be one the evolved souls.  I wish I was a  slightly ditzy type got married to the love of  her life early on and plonked out 3 perfect kids and had a uneventful life.  I wish I had not an ounce of complexity and that my soul got through this lifetime with not one darned lesson learned.  But that’s not what was in store for me and since I’m being force-fed all this crap, then I might as well get something positive out of it.

The lessons 2010 has taught me:

Patience:  When such horrible things happen to you in a short period of time, you zoom in on the pain. You magnify it and you forget that it is only a moment in time. So much can change so quickly and there all these journeys and paths waiting for you, and you never know what will come in 6 months, one year or 5 years.  What I need to do now: wait for it, with equanimity. I’m doing this…after a fashion.  Diana Gabaldon (my all time fav author) has a line in her book which goes something like this: If Time is akin to god (in its ability to heal pain), then memory is the very devil. It is true. I have cried very little I found out Turbulence had died, mostly because my brain does not think much of that time, of her, or what she might have been. If I go there inadvertently, I back off like I’ve been scalded.  On the plane I was sitting surrounded by children. On the seat ahead of me was this adorable baby that kept playing peekaboo with me. I played with him for about 10 minutes then suddenly, I was sobbing helplessly, something I had not done in weeks.  Memories, they are the devil. 

Humility: I thought I could control my life.  I thought I could plan these all important things and they’d turn out the way I’d imagined.  2010 has ruthlessly demonstrated that I have no control.  I have none over my biology, over destiny, over anything really.  How do you deal with this sense of utter powerlessness?   The only recourse (available to me) is humility and say that I’ll do whatever I can to achieve my goals, but be ok with whatever results emerge, even if they are horribly cruddy ones.  It’s an exercise in faith actually, to say no matter what comes, I’ll be ok with it, that I’ll see it as a blessing.  Sometimes  I feel I’ve gone a little way towards this, and at other times I think of my worst case scenarios and my throat still closes up.  But still, I’ve come a long way from where I was at the start of this year.

So goodbye 2010.You were a pretty harsh teacher, I hope 2011 will be kinder.