Sorry for being MIA..

I rarely blog nowadays and the reason for that is twofold- first, there is nothing concrete to say and secondly, life is, in a word, frantic, with work during the week and a fairly hectic social life on the weekend.  The second part is surreal.  A year ago, I gave up my carefree existence to start TTC. I gave up drinking completely, I became a homebody, I completely lost interest in the opposite sex.  After my 2 losses and the move and having to shelve my TTC plans temporarily, I'm suddenly thrust into this 'Sex and the City' lifestyle which is all about having a good time and meeting new people.   Its just a completely different set of priorities. This change actually feels good. It feels weird thinking about giving all up to go to last years way of life,  but there would be no regrets. All of this is fun, but if I had to abandon this to stay home in sweats and watch TV while being pregnant, I would do it without a second thought, and with complete happiness. 

Things are changing so rapidly, I feel like Alice in Wonderland, not knowing what will happen next. I think its highly unlikely that I will meet somebody and abandon plan B, but at the same time, I have no idea how the future is going to unfold. I have just a feeling that this year has some tricks up its sleeve- I just hope they are ones that lift me up, not knock me down. But even if they are ones that knock me down, I have to say, what does not kill you only makes you stronger. Despite all my misgivings of whether I will be able to handle another catastrophe in the baby-making department, I know this- I have a far greater reserve of equanimity than when I first started out. I've started realize, and more importantly, accept that I have no power, so when life does not go my way, I  have a better chance at not fighting it and just accept and adjust to whatever comes along. There is nothing else to do.

Science stuff

My antral follicle counts- done twice last year, have been very high, in the 30s. At my appointment with Dr L, I was shocked to see that one ovary had 11 follicles (small decrease), while the other had only 4-5 (huge drop down), giving a total of about 15. My antral follicle count has decreased by half. I was flabbergasted. I don't know what it means.  As you all know, I tend to attribute everything to the change in my vitamin D levels (because that has been the only big change in my physiology). Metformin has been shown to decrease antral counts in women with PCOS,  but that data, as my SD RE put it, is not too good. It would be interesting if vitamin D could do this as well, because both things actually influence sugar metabolism, which is has mysterious, ill understood links to fertility and egg production.

I don't know if my decreased AFC is good for overall egg quality, we shall see. As my next TTC cycle will be completely unmedicated as well, the only thing I have to go on is quality of my natural cycle. This takes into account BBTs, length of luteal phase, number of days with egg white cervical mucus, number of days of high fertility, etc.  Following your fertility signs can tell you a lot about your own cycle- this doctor describes it well here. The problem is though, you are shooting in the dark. The last cycle I conceived in, was, in my own opinion, an absolutely crummy one. I was very concerned about egg quality. Nonetheless, the RE, looking at my uterus and ovaries the day of ovulation, thought things looked good and we proceeded. And it was all good enough to produce an embryo that implanted beautifully and thrived in the first 6 weeks even thought it had a gross chromosomal abnormality. What I would love to know is whether my egg was missing an X chromosome because it was produced in a cycle with less than one day of high fertility before the LH surge began, but I will never know, will I? And even though I understand my cycle far better than the average person, I haven't a hope of figuring out what works and what does not.

Miscellany

Life is progressing well in NYC. I think at this rate, my liver is going to be pickled (quite a change from the I-don't-touch-alcohol slogan which as the backbone of last year) but I'm slowly settling in and meeting new people.  Loads of fun!

I *finally* had my new RE appointment today (Dr. Licciardi, NYU). I walked out of it fairly pleased, on the whole.

The highlights
Finding out IUIs will be covered (or so I believe at this point)
No forking out 300 odd dollars for a new consult- only a flat small copay!
He agreed right off the bat to genotype me at the FMR1 locus (this is also the fragile X test)

The Plan Forward- do I really have a problem and can it be fixed??
We have no idea why the crapfest that was the last year really occurred.  I think the question to ask is- do lean/ovulatory PCO woman really have problems either conceiving or maintaining a pregnancy? There is a trend to suggest this, but really large, well designed studies have not been done. What I want is the opposite of the studies that are done- I want them to take women who conceive easily and have had multiple healthy pregnancies, and ask if THEY have lean PCO and thyroid autoimmunity and heightened NK cell activation and anti-phospholipid antibodies and all the million other vague problems that plague infertiles.   Sigh. 

Dr. L was willing to go with the theory that I might have lean/ovulatory PCO, but was completely noncommittal (as any sensible person would be) on whether this was the real cause of my losses and whether metformin would help me.  The way he put it- there are two types of PCO patients...The first category, that I fall into, which he referred to as 'New York PCO' (ha) wherein women are thin, are not visibly too hirsute and might even ovulate regularly. Then there is the second class of overweight women with overt glucose metabolism issues and ovulatory problems. In his opinion, metformin really helps the second category, but seems to not do so much for the first. I've read the studies, I've read the reviews discussing the studies, I can't really be sure metformin helps either, but nor can I discount it. There are studies which show it does seem to reduce the antral follicle counts and AMH levels, however bigger and better designed studies are needed IMO. So as it stands- we agreed I would start metformin about 3-4 months prior to my TTC cycle.  I think there would be significant debate about when to end it- I would probably atleast go to the end of the first trimester.

We are also getting my glucose metabolism investigated. I've had fasting glucose tests done and they are excellent- normal sugar levels and actually LOW insulin, indicating insulin sensitivity, not resistance. What we have not done though, is a glucose tolerance test. Given that I love to shock my system with an insanely sharp sugar spike atleast once a day (such a good idea for a girl coming from a family of type 2 diabetics...NOT), it will be interesting to see how my body responds.

More on vitamin D and BBTs and charting and follicle counts to come soon----and I've also got the doctor reviews to put up. Not that I have that many- but- my page is now the FIRST that comes up when you do a google search! Its even pulling up doctors mentioned in the comments- super cool!

Why does miscarriage hurt so much?

I was honestly, given everything, taken aback at how much my 2 losses have hurt me. I can understand why a woman who has gone through IVF or years of infertility is that shattered by a pregnancy loss, its not just the the fact that she has lost an incredibly precious promise of the future, its also about the years of emotional investment, of taking nasty drugs that disrupt your body's natural processes, its almost like the Sisyphus and boulder situation, you have spent eons pushing that boulder up the hill, only for it to flatten you on its way down.  I can understand their pain and frustration.

In my case, so far, I have paid relatively little money and even that I could comfortably afford. I have had no drugs injected into me (or taken orally for that matter), my conceptions were entirely without any medical intervention other than getting the swimmers into me. I got pregnant both times I tried. My 2 first trimesters were pretty easy.So basically, I went through the entire get-pregnant-and-lose-babies with a minimum of financial and physical liability.

With early pregnancy loss, its not the same as have lost a child you know, its more like the loss of an infinitely precious promise that had yet to be realized.  From a philosophical standpoint,  I'm pretty darned aware that miscarriage has happened billions of times.  All this has made me wonder, has my soul ever occupied the body of any child that died, at any point, during those 9 months? If the theory of the soul + body is really true, then its highly likely. Maybe after that death, my soul entered the body I occupy now. If I had gone somewhere else, I would'nt be where I am now. I would maybe have different parents (NOT ok with that!), a different identity.  When you think about it in this way, then the grief associated with early pregnancy loss diminishes a little.

Also, one really does not think about this, but sometimes, your situation could be far worse than what it is. If we think early pregnancy loss is hard, then imagine a parent watching their child die of Tay Sachs, or or childhood cancer, or some of those completely horrible premature aging syndromes.  Or imagine a child being born with a disability that would make his or her life difficult forever. If, as Hinduism puts it, that the body is only a garment for the soul, then I wish, above all else, that my child gets a good dress, with no rips or tears or sleeves missing. So if a first trimester miscarriage is really saving me from something worse, then I am ok with that, honestly. I've been in a unique situation, of actually knowing that to be true in the case of my second pregnancy, with the Turners syndrome diagnosis.

So- little physical or financial investment and being at ease, mentally, with the theory of the journey of souls---and still this hurts like crazy. I feel like I've been scarred for life, with each loss gouging the cut a bit deeper.  I want to make that hurt go away, because, I might have to go through the process of pregnancy loss yet again. And if it keeps hurting so much each time, I fear I would not have the emotional resources to keep at it multiple times, to find my golden egg.

I've always been an eminently practical person. That practical nature, now is demanding that I diminish, in some way, the specter of miscarriage, so even if I have to go through it again, it is a little stumble rather than a giant fall.

Despite all this tough love and merciless laying out of facts, I fear I've made little progress.

Astrology and me

For anybody reading my blog who does not know this already, I’m Indian.  If you have ever heard the stereotype about Indians fervently believing in astrology, it is true.  There are armies of astrologers telling a gullible nation of a billion people when to plan their weddings, when they should start a business, when they should buy a new house, the list is endless.  And they buy it.  They bend over backwards, arrange everything around the prediction. It is bloody incredible. 

Astrology is an ancient practice, with a mathematical system behind it.  Interpretation is drawn from the positioning of the planets and the stars.  Most modern day ‘astrologers’ are charlatans, not knowing anything about this ancient system. There are a few people who actually have made a study of it and apply it properly, though the real question is, is there is any validity to the system?

Courtesy of Google Images

I don’t believe in astrology. However, I cannot sit here and confidently say that it is absolute rubbish either. Its kind of like my position on god, where I’m neither a believer nor an atheist.  My parents, however, believe in it. They have taken my charts, my brother’s charts, various family members’ charts to the astrologers, and occasionally I am surprised that they get interpretations that accurately sum up the situation, since the astrologers have never met the parties in question and do not have the data to make up something that will fit the case.

But still, I am disposed to definitely *NOT* believe in it.  But every now and then, I hear something that just makes me want to tear my hair out in confusion. In the past 2 months, my parents have taken my charts to two separate astrologers. Both have assured my parents that I *will* get married (My response to that…..HAH + rude finger sign). The part that raises my eyebrows is the following

Both parties independently predicted that there is a strong likelihood for me to meet somebody this year . Spooky bit is that both parties independently predicted that the likelihood arises in the same month- July

One of them said there is a huge protective influence, which will make sure nothing really bad happens to me (enough things that have happened in my life so far make me want to agree with this one)

The other (who has no idea of my pregnancies) told my parents that it was really good that I had not been married till now, because my charts indicate that if I did get pregnant before November 2011, there is a strong indication my life would have been in danger.

This last part is truly the one that makes me want to screech in frustration. Why would they make up something like that? Why bring up pregnancy out of nowhere? Why go and name that one month?!?! Because, adding to the weird factor, my tentative date for trying again is December 2011.

I’ve been wondering why my babies died. My brain just keeps buzzing back to this unanswerable question, picking away at it. I’ve always had this sixth sense about things that proves itself right maybe 50 % of the time.  That little annoying voice has been piping up saying that that there was a reason all of this happened, that I just did not know it yet.

Everyday, my brain is so tired from buzzing around endless explanations, the scientific and the philosophical. Then when my parents relate all of this to me, and the buzzing just rises to a bloody crescendo. Ugh.

Do you believe in destiny? Do you think there is a grand plan to things? Would you buy all of this as whacky coincidence? Feel free to not hold back when you answer.  

Reviewing Doctors

Thank you all who have come by from LFCA to the Good/Bad/Ugly post and shared stories of your doctors. Somebody asked whether I was doing a national listing. Another person asked whether I would be willing to put my review up somewhere else.

The main reason why I wrote those reviews, was to harness the power of search engines. The most direct way to find information about anybody, is to google them.  It is the universal  and easiest way of locating anybody. I hence want to create a page that will contain honest, detailed reviews about doctors from everywhere, that has enough tags, and sufficient hits to pop up on the first search page. This last part is really important. You can write a review about somebody, that might be so far behind on the google searches that anybody who looks for the person will never find them, because your review is sitting on page 6 of the search, in a rarely visited website.

It does not matter if the doctor is American or international.  It does not matter even if they are in a small town on the other side of the world. The point is to put their names, with their hospital affiliations and regions on one giant page, which has all these different tags it can be pulled up by.

I would have to consider how to organize the page if I got a lot of material. I think I will stick with having 3 categories (Good/Bad/Ugly), and then further group by region. International is fine.

So this is the format I would prefer

Refer to yourself by any nickname you choose.  Link to your page if you want.
Choose review category (good, bad or ugly)

List full name of doctor with clinic name, region
Specialty: Example OB/ RE/ Perinatologist 
Description of your interaction

It would be easier if you emailed me the information- my address is Justlookingsd30@gmail.com

Once I have enough, I'll enter all reviews in this new format.

Three short months

I checked the date yesterday and I was shocked that it was exactly 3 months after discovering my second pregnancy had ended.  It blows me away that it has only been such a short time, I’ve changed so much, my situation has changed so much that it feels almost like years have passed.

I’ve traveled 1000s of miles in this time, and I’ve spent one month each in drastically different places, India, California and now New York.

My first month was in India. It was the happiest of these past 3 months, which is mindboggling given that it was immediately after my loss. But---being with family was going into this incredibly comfortable cocoon. It’s the same one I will return to, to fight out this battle of trying to create another human being.

The next month was spent in California, with the stress of moving cross-country while dealing with my new reality. 

The third has been spent in NYC, and here it is the stress of settling into a new place.

I’m just amazed at the speed at which my life has been moving, and the utter lack of control I have over anything.  Its also just bewildering how much I’ve learned in this short time. The most shocking revelation was that my baby had Turners syndrome. Then came the vitamin D story. Then finally came the PCOS story.

Ever so often, you learn something new, often entirely by accident. You start to tug on one chain, and it takes you someplace you had never intended to go. Sprogblogger had recommended Dr. Barad at the Center for Human Reproduction (thank you, sprogblogger!).  Absolutely by accident, I ended up looking for papers Dr. Barad had authored, and found a pretty darned interesting one.

I’ve remarked on this on ‘The science of infertility’ page : I found it very interesting that a lot of woman who had PCOS also had anti-thyroid peroxidase antibodies. I could never think of or find a link.

This paper I just found says, YES, there IS a link between the two, and it comes down to this gene on the X chromosome, called FMR1.

Women who have low copies of this gene product have both manifestations of PCOS and autoimmunity (often anti- thyroid peroxidase antibodies) and have, according to the good doctor, a much lower chance of pregnancy in IVF cycles.

Just another thing for woman having these 2 issues together to check out, if you feel up to it. However, I should add, if you do discover you have this, I think it would end up being a face-palm moment because I don’t see what you can do to fix this. But still, having this information has to give you better clarity in figuring out what your path forward is.

Despite the fact that I have both PCOS AND thyroid issues, my microarray results (gotten a while back) suggest I’m normal for this gene- still, I have to confirm that with an expert. Also, I have no issues in getting pregnant whatsoever, and this paper is all about low pregnancy rates in women mutant for this gene.

But yet, I do have a little piece of my X chromosome missing. Interestingly it is the cytoband adjoining the one that has FMR1. And I’m starting to read more and more that some of the X-linked abnormalities contributing to fertility issues- I think I’m going to have to see a top notch geneticist, just for my own peace of mind.

It never ends.

And a lot can happen in one day, let alone 3 months. I should not be so surprised  (nor unhappy) on account of  the volume of change in this short time.

Stasis sucks.  Rapid change, although disconcerting, is better.

The good, the bad and the ugly (with an update and a request)

Prior to November 2009, I think I had seen a doctor maybe 4 times in my life. Most little infections and all things medical were managed by my mom, and she was my mom, even when she had her doctor's hat on.

Then, I started the TTC process. So began a year of a ridiculous number of blood tests and visits to a variety of doctors. I've encountered disinterest, callousness and  sheer laziness: doctors who could not be bothered to look at anything other than the most basic things and got annoyed if you asked them to do even a little bit more.  But I've also encountered the opposite. Some of my doctors have been genuinely kind, caring and empathetic. Others have been sharp as whips, keep up with the literature and most importantly, are interested in the little details which sometimes can be the most important ones. Some of them  (all of the smart ones actually) managed to combine the two (kindness and competence) and these are the best!

I've written up bad reviews  for the worst offender and good reviews for the nice one. But still, websites like Yelp can hide your reviews if they are too positive or negative. So this post, where I name my doctors, their practice and  review my experience with them, has been a long time coming. My blog is also google-search able so anybody trying to decide whether to go with these doctors will also have more information to help make that choice.

The Good

My RE in San Diego, Dr. Gabriel Garzo at Reproductive Partners Medical Group.
I love this practice, overall. The doctors actually do the inseminations themselves!  Their bottom line is just how much they can help their patients and they are genuinely kind on so many different levels. Dr. Garzo listened to my history carefully and ordered that really important test for anti-thyroid antibodies, we would have never caught that problem without that.  I've sent him many papers and he actually takes the effort to read them. The nurse coordinator there who dealt with me (Lindsay Ray) was just wonderful. Lets face it, I'm not the easiest patient to have. Medical practices are not used to having a patient who knows so much and hence demands that they go in so many different directions to investigate all possibilities. She dealt with all my requests for tests, my going off on multiple tangents with amazing patience. She always came through, always tried her best to followup on test results even if it meant staying late. I was very impressed by her professionalism.  Kudos, all the way around.

Dr. Robert Lind, an Endocrinologist with New York University.
While most doctors today do pretty much the same things and follow, more or less, similar treatment philosophies, what sets the really good ones apart from the run-of-the-mill ones is an ability to listen to the patient, care for the patient and see them as more than a face in a parade walking in through the door. Another important quality is the keeping up with latest scientific literature, and to be able to judge to objectively. This doctor had the best reviews from the endocrinologists my insurance let me go to, and he more than lived up to them. I went to because I wanted somebody to manage my thyroid during pregnancy. He took an extremely detailed review on my history, covered every single avenue when it came to testing,  and showed that he was extremely well versed with the latest studies and judged them sensibly, and more than anything, was willing to carve up time from his day, to follow up, to listen to me, to accommodate me as a patient. He responds to my emails. This is a very small thing, but its important. Another doctor, an RE, also at NYU, on my emailing him with a question, wrote back, just to tell me to call his office with the very same question, and not email him on the subject(!!!). Doctors and their egos. Dr. Lind is different, he is the best kind of doctor. I recommend him wholeheartedly.    

 The Bad 

Dr. William Hummel at San Diego Fertility Center
This was, sadly, the first practice I went to. Lets get the minor offences out of the way first- you never see the doctor after the initial consult, and all interactions are through nurse practitioners. The doctors love to delegate everything to somebody else- ultrasounds, IUIs everything short of an egg retrieval is done by nurse practioners. 
The more major offences:
Laziness: They do not re-wash thier IUI-ready sperm. Most clinics actually do this, and there is a reason for this, that there could still be prostaglandin contaminants which will make you cramp horribly after an IUI.  After my first IUI, done with this clinic, I was curled up in bed wishing I had a hot water bottle, the pain was fairly bad. My second IUI, done by Dr. Garzo- I was fine all day after.
Utter lack of interest and sheer callousness: 2 weeks after my first miscarriage, I had a query about cycle parameters (estrogen, length of luteal phase etc and corresponding egg quality). It was not a question the nurse could answer, and I asked her to forward to Dr. Hummel. One week later, I get a reply by mail saying basically this." I am a very busy man and do not have have time for such questions. Luckily for you, there are lots of other REs in San Diego, go to one of them." I've saved the letter because I could not believe my eyes, it was incredible. BUT--that was the biggest favor he could have done, I then ended up with Dr. Garzo.
Utter lack of attention to details and incompetence:  In the initial workup  this clinic had asked for had included a TSH test. That value had come back at 2.74. Now, any RE or OB-GYN worth his salt will know this- a TSH of over 2.5 is not good for pregnancy.  This is a paper that 3 different doctors I've seen have mentioned to me, it is a hall mark study. This practice was either unaware of this paper or ignored my test result - if they had followed up and tested me for anti-thyroid antibodies at that point, who knows, I might have been sitting with a 1 month old baby right now and not writing this sad entry. Ironically, this doctor has written a book on miscarriage and successful pregnancy- guess what features prominently in pregnancy loss list of usual suspects??? Anti-thyroid antibodies.  This guy is the main reason I'm writing this post. Accountability is much called for here.

The Ugly

Dr. Andrew Hull at Repromed Department of UCSD.
This was the perinatologist who saw me during my second pregnancy. I was actually first struck by both his and his colleague (Dr. Maryam Tarsa's) brusqueness and shortness, but that is ok.  It would be icing on the cake if you were kind and interested in me as a patient but that is not really a requirement.

Why he is on this list is because of what happened after we found out my baby's heart had just stopped. After the initial shock (during which utterly no kindness or empathy was shown, its like, whoops looks like your baby no longer has a heartbeat) I was just standing there saying F___ no, this cannot be happening again. At this point he stops me and says, " Please do not swear in my presence". To this, I replied something to the tune of, my baby just died, what do you mean I cannot swear right now? The words 'I don't care' were left unsaid, but he just repeated- "please don't swear again'. Don't know what to say about this guy, you can only shake your head. I was going to let it go, but I think this story deserves to be out there.