Wednesday, December 29, 2010

WOW (edited)

For those of you who are following the vitamin D3- AMH story, here is the latest.

3 weeks ago, I was in the deficiency/low range for both Vitamin D3 and AMH.
Vitamin D3= 16 ng/ml, AMH= 1.1 ng/ml.

The low AMH sparked off an avalanche of fears about diminished ovarian reserve. Then I took gigantic doses of Vitamin D (60000 IU weekly) for 2 weeks

Then I gave blood again,  and tested both Vitamin D3 and AMH.
Vitamin D3 = 70 ng/ml (perfect) and most amazingly AMH= 5.18 ng/ml  (high and now in PCOS range)

Overall, a four fold increase in AMH levels (going from 'low fertility' to 'optimum fertility' in the lab classifications), which I found just incredible. Its always possible the first lab really messed up the test, but I think that there is really a fair chance (based on the study I posted about) that AMH went up because Vitamin D did. Anyway, I've let the group at Stanford studying this know and maybe one day a formal study might be launched. 

Right now, the primary emotion is  massive relief that I'm not dealing with a case of low ovarian reserve here.

Interestingly, my testosterone levels also changed dramatically, they went from being fairly high in the Vitamin D deficient state to being low after my deficiency was corrected.

Currently, my theory (derived from combining very few facts with a lot of speculation and intuition) is that my problem could be two-fold,  first low vitamin D3 (found in about 40 % of cases with PCOS ) and a possible undetectable issue with insulin resistance, which could be addressed with metformin.

Other than the now corrected Vitamin D deficiency, my only PCOS parameters are lots of antral follicles and now high AMH and slightly high DHEAS- The million dollar questions are:
1)  is this messing up egg quality and thus responsible for my two losses?
2) Is it tied to sugar metabolism and be fixed by metformin?

I have a very strong family history of type 2 diabetes (practically everybody in my father's side develops this), though I could find no indication whatsoever of insulin resistance in me. But still, metformin has been shown to help even when there is no overt insulin resistance. Nothing is a sure-fire fix. Last time I attempted conception I was praying the thyroid hormone would be the magic fix I needed. The next time, I will be hoping its all of this.

Friday, December 24, 2010


About 3 days ago I finally became negative on the urine beta HCG tests. Having gotten this green flag,  I finally went in for my antral follicle count today.

And...phew. AFC is 15 follicles per ovary(!!!).  Ovaries look polycystic but thankfully, ovarian volume looked normal. Most reassuringly, this definitely does not correlate with low ovarian reserve, which was my one gigantic fear since I found AMH was low.   I also gave blood to retest for AMH and (for good measure), Vitamin D3 since I've been on massive doses of the latter for the past two weeks. Testing in India is cheap so I go nuts. Off topic, but I'm also getting Vitamin B12 tested (nothing to do with fertility that I know of), but Vitamin B12 deficiency is really common in the Indian population and has also cropped up in my family. Interestingly, severe deficiency of this vitamin seems to cause some mental issues (periods of rage, stress etc).

So, overall,  it looks like I might have ovulatory PCOS (which according to my Indian RE may be compromising egg quality) but the jury is still out of the diagnosis. I'd be glad to have a confirmation, at least we would have something to treat.

Thursday, December 23, 2010

On vitamin D

I came across two things which I beleive I should share. The first was a news report about a finding presented at a fertility conference. This group at Yale tested blood levels of Vitamin D in 67 'infertile' women. 93% of women had levels that were low or clinically deficient. That is pretty amazing, IMO.

The second is this recently published study, where they basically found that higher the vitamin D levels in your follicular fluid, the higher your chances were of achieving pregnancy in IVF.

My advice to everybody struggling to get or stay pregnant- do a blood test for this vitamin. Its not the most expensive thing and seems like a reasonable thing to check out.  Testing your levels before taking vitamin D supplementation would be prudent because you would have to tailor your dosage to your blood level.  I was clinically deficient. Granted I had taken my last vitamin D supplement 2 weeks before this blood test, but while I was pregnant, I was consuming around 1500 IU/day, which is about 6 times the daily recommended dosage, and my levels 2 weeks later were still abysmal.

Switching gears now.  In my last post I had said none of my theories have been right.  I just realized that was not true, I have been proven right in the most horrible way. As my second IUI rolled around, I had become really scared as I had looked at my cycle and realized that it was one with fewest days of peak estrogen ever and I was nervous that egg quality might be compromised. (Prophetic blogpost here) 

I went ahead with the insemination because on ultrasound, everything looked decent and nobody knows what parameter really determines egg quality. I did conceive but it was my worst fear realized- a genetically abnormal egg. Its been only a month since that horrible ultrasound, that awful day.  I'm doing very well though, all things considered. I guess I should thank god for small mercies.

Tuesday, December 21, 2010


Welcome! I had put myself on the last ICLW, only to discover that my baby had died 2 days into it.  Needless to say, not much commenting got done. This time I want to actually participate.

To sum up, I started 2010 eager to become a mommy. Given my age (30), my family history (a bunch of bunnies all) and initial testing results, I confidently thought it would be a breeze. Well, the good news, I got pregnant both times I tried. The bad, I lost both my angels, late in the first trimester.  Two pregnancy losses in less than 6 months can either shatter you or make you stronger and tougher than you were before. Thankfully, the latter has happened. I'm facing demons I never thought I'd never have to face, or more to the point, never could face; recurrent pregnancy loss, the possibility that I might never have biological children, and I'm still standing. 

The other thing, I'm a science geek. I'm an immunologist and am intimately familiar with human biology to start with. Now, after countless hours of reading, inventive google searches, trawling of message boards etc  I've learned enough about reproductive science to give REs a run for their money.   A lot of this blog is about the science and the mechanics of it all, and if any of you want to wade thorough it, there is a lot of discussion on things like PCOS, thyroid issues, egg quality etc. Though I'm really scared, I'm also fascinated by the biology and love talking about diagnosis, treatments, clues, both my own and anybody else's!

So welcome, and I look forward to reading your stories!
The rest of this post is actually about science stuff (indulge me and read if you feel upto it!)

On Vitamin D and AMH

It looked like I might have PCOS which was compromising egg quality.  To investigate this further, we tested AMH, a hormone that seems to be elevated in women with PCOS. To my utter horror, AMH levels came back low, similar to that of a 37 year old's.  Interestingly, I had also found that I was Vitamin D3 deficient (I think every woman who has undiagnosed fertility problems and is not a lifeguard or something similar should get this one checked out).

On a hunch, I decided to look whether there was any link between VitaminD3 and AMH.  A google search yielded one single clue, this article (which basically says that vitamin D3 is capable of stimulating AMH production) written by a group at Stanford University.

I wrote to the scientists explaining my situation of low AMH and vitamin D3, and asked them if they knew of any studies correlating the two, and whether they were planning to do any.    This is the response I got back:

Thanks for your message which I will forward to Dr. Malloy.
The original connection of AMH and PCOS we made was not based on a study but an unusual finding we made in a child with a mutation in his vitamin D receptor. In other subsequent work it is clear that in some organs of the body, vitamin D stimulates AMH. There is no proof that vitamin d deficiency causes AMH deficiency. In any case, you should have your vitamin D deficiency treated. If it turns out that your AMH rises after treatment, I hope that you will let me know. We have considered such a study but to my knowledge no data bearing on this point are yet available.

It was definitely my POA to restore D3 to normal levels and then retest AMH. It is kind of exciting to know that if AMH goes up,  my story might assist in starting a new study which might end up identifying a major problem, if D3 indeed regulates AMH.  Its a pretty long shot, but at this point, a logical one.

Plus, I'm praying AMH goes up, I do not want to be saddled with a rapidly falling ovarian reserve at age 30 , that would really, really suck. So I'm praying Vitamin D is the answer that will fix all my problems, because right now, I have no other candidates to play biological white knight.

Disclaimer: I've had many theories, always inventive and sometimes even logical in the past few months.  Each and every one of them has been shot down by the evil universe.  The mental image I have of the process is Peeves the Poltergeist zooming over my head, laughing maniacally as he drops dung bombs on my theories.  One day, I will be right about something- looking forward to it!

Friday, December 17, 2010

random musings from the fevered brain

I'm sick. I've got a noseful of snot, a fever of over a 100 degrees (thank god for anti-inflammatory drugs) and a really nasty sounding cough. Very happy I've got people to pamper the crap out of me. Unfortunately we also had a weekend getaway planned to see another large family cluster of cousins and nephews and nieces. Sucky timing, I was *really* looking forward to it.

Anyway, back to talking about baby-making. Currently, I'm grouching over the impossibility of predicting CD1, sans period.   I had my D&C 18 days ago, and I'm still showing up positive (though its almost gone to nothing) on pregnancy tests. I always figured that once the beta levels dropped to nothing, that would be when my true cycle began. The point of this exercise is repeating an antral follicle count and then AMH early on in the new cycle.

Right now I want to talk about uncertainty. The RE I consulted with told me,  I guarantee you, 100%, that you will have a baby one day.  I have none of his certainty. All of my confidence ( in making a biological child) is gone. I'm confident I'll still be a mother, by what route though, I now do not know. Oddly enough, I have faith in one thing- destiny. I believe that you will end up with only the child(ren) you were destined to have, period.  I see people suffering so much, with repeated losses, with years of infertility trying so hard to have that biological child, and failing. I keep thinking, do these failures occur because there is another child waiting for them, and they have to make their way to him/her?? Maybe its a child that somebody else has created. Maybe its from a donor embryo.  Or that  its not yet time to have the biological child, because the right combination of sperm and egg has not yet been achieved.

These are at the heart of philosophical debates- is everything that happens just an accident, or is everything by universal design?

Right now, I instinctively believe that everything is preordained. Its a belief that sustains me. My mom said to me, if Turbulence was meant to exist, if she was meant to have a rich life that touched so many others, it would have happened regardless of the Turners. I believe that, and it brings me peace. In this baby-creation game,  we can do whatever we can but we have no idea what the universal plan is, all that is in our power is to try and then accept whatever comes, no matter how painful or joyous.

If adoption or donor embryo are waiting at the end of the road for me, then I want to be at peace with that idea. Why am I concerned about either? Because I'm a control freak and its unfamiliar.  When choosing my donor, I looked at over 200 candidates, and I found ONE that made me happy. Because I spend so much time thinking about it, genetics IS important to me. But this fear I can deal with.  A part of me is aware that it does not matter, genetics is a crapshoot anyway and all people are unique and beautiful individuals, that nurture is about as important as nature.  The problem is, its the great unknown that I'm having issues with.. You don't KNOW the birth parents, while I know and I'm comfortable with the bagload of genetics I carry. I respect my family. I respect their intelligence, their values, their kindness, everything about them.  If my kids turned out to be like my mom or my dad, I'd be ecstatic. I'm deeply in admiration of my donor's genetics too. Overall, from both sides, the genetics are admired, but more importantly, they are familiar.  I'm afraid of adoption or DE because I have no clue what I'm dealing with in terms of parental genetics. The sensible thing, of course, is to cross these bridges only when you get to them. But this is one area of my life that I need resolution with, now, to be at peace.

Cherry on top

 The rules: link back to the person who gave you the award, pass it on to five (or a bunch of) other blogs, and leave them a comment telling them of the award.
Babychaser at  The Baby Chase Project, Randi at Fervently Wishing and Aronahui at My Cheap Violin have kindly awarded me the "Cherry on Top ' Award. All of these are strong women who write beautiful blogs. If you have not discovered them already, please go over!

A lot of blogs have already been awarded this. I've been trying to find other blogs from my list who have not- here goes.

 Life and Love in the Petri dish 


Park Slope Purgatory

A litte blog about the big infertility

The Pause

Skating on the edge of madness

These are all women that I feel privileged to know, if only virtually. Suffering builds character, and it also makes for great writing, exemplified here. Go over if you don't read them regularly already!

Wednesday, December 15, 2010

'There is more to life than reproduction'

This is what my mother (in exasperated mode) said to me this morning. We were getting ready, and I was talking about testing and logistics. She turned to me and said, you don't really think about anything other than this, do you? I truthfully replied that that is kind of correct- no matter what else I'm doing or pursuing, this is always at the back of my mind.  I've never really pursued anything this vehemently and determinedly.

My mom let it go but she hates what this journey is doing to me, and her view of all of this is so very removed from mine. She does not want her baby to suffer, and she sees this process primarily as one that has hurt me more than anything else ever has and so she wants me to ease up and step back, for my own sake. Me, I'm incapable of it for the most part.

In addition to fighting infertility, you also have to fight the perceptions that others have. Not blaming them for those perceptions, but boy, its exhausting.

On the test front: This journey is littered with clues that may well be red herrings. Another such one has come up. I had Vitamin D3 checked- my levels are low (16 ng/ml for anybody interested). This vitamin is low in PCOS. I also spent a while asking Dr. Google in creative ways if AMH and Vit D3 are linked, and lets just say I found one tantalizing paper saying they were (Vitamin D binds to the AMH promoter and stimulates its production).

So I'm starting Vitamin D supplementation (that part is fine and sensible, 16 ng/ml is clinically too low)  the part that irks me is that I'm looking at this issue and hoping and projecting it to be the magic fix for all my problems, just like I did with the thyroid.  I'm so tired.

Monday, December 13, 2010

Shattering my preconceived notions (karyotyping results)

I got the karyotyping results back and they were what I had been praying for since I heard my child's heart had just  stopped- a chromosomal abnormality, Turners syndrome (45 X0).   It does not seem that way, but I actually got lucky. Turners is a genetic condition with wide variation. In the least severe cases,  the child can survive, but have some serious physical issues, including heart defects and sterility.  Chances are, had this loss not occurred, I would have detected it in  the 5 month ultrasound and would have been faced with the agonizing decision whether to terminate or not. I thank god, the universe, whatever, that it did not take me to that place.

I would put this down to really crappy luck, except, though, as an effort to determine the PCOS diagnosis, we finally tested my AMH.  To my absolute amazement, it came back  on the low end, at 1.1 ng/ml. The reference range for the testing lab is 1.23- 8 ng/ml. AMH is touted to be the most accurate predictor of your ovarian reserve. The lower it is, the fewer eggs you have and the closer you are to menopause. My value, while not abysmally low, indicates that my ovarian reserve may not be as good as I thought it to be.

What this has told me- don't have preconceived notions about your own biology. I always thought that I had plenty of good reproductive years left. My grandma gave birth to my dad, her 9th child, at 45.  My cousin conceived her one and only child (a perfectly healthy boy) at the age of 43!  My mom got pregnant every time she wanted to, and produced 3 healthy children. Reproduction is NOT an issue with my family. When I had confessed my plans to that cousin who reproduced  (by accident) at 43, she tore into me for not waiting any longer, because according to her, I could have have done this comfortably even when I was skimming 40, given our history. At that point, I thought I could too. Now I don;t know anything anymore.

We have not yet confirmed that its a failing reserve we are dealing with here.  Overall, my test results can be summed up in one word- confounding. I'm baffled, nothing seems to add up.Adding weight to the PCOS diagnosis,  I have high-ish male hormones (though still within normal reference ranges). PCOS is associated with insulin resistance, with fits with my family history of type 2 diabetes. Because the universe has decreed that nothing should ever add up, I have the opposite,  insulin sensitivity- low insulin, normal sugar in fasting levels. With respect to ovarian reserve too I'm scratching my head.  At the last test around 4 months ago, the other good indicator of ovarian reserve, antral follicle count came back ridiculously high at 34. So we don't have the full picture yet, we need to determine if I have PCOS, or a close-to-failing reserve. Of the two problems, I'd pick PCOS I think, though its choosing between the devil and the deep sea.

Sometimes, things happen that really make you wonder if there is a gran plan to things, even if  a particularly perverse, slightly evil one. The day Turbulence was conceived, something told me it was a girl. After the loss,I've been praying it was a boy because then I thought, for some weird reason it would not hurt so much. It also it takes the guesswork out- if your karyotyping results are a chromosomally normal female, you will always be left a little in doubt, it might have been your cells they examined by mistake. But all in all, I was really anticipating an answer that would definitively give me the gender of my child. I've even been very mildly obsessive about this point.  When I got this result, I started laughing (the alternative was to cry). With an XO genotype, my child was essentially genderless.  Talk about the universe telling you, in a creative, slightly evil way of course, that sometimes, there are no answers.

Sunday, December 5, 2010

On the haves and the have-nots

My mom has told me repeatedly that she is proud of me for how well I'm coping.  I'm proud of me too, but boy, do I want to be doing better than what I'm doing.

One part of me occasionally wallows in all the reasons why I feel I'm being singularly picked on by the universe. My biggest gripe is that I have to go through the hell of RPL while being single.  I read 'Coming to Term' and there are some stories in there that make you break out the kleenex while  breaking out in a cold sweat, you could not believe that anybody could be tortured that much. I kept thinking, well, atleast they had each other. But at the end of the day, you realize one thing: you should not compare yourself to other people (even the happily married fertile mrytles who get pregnant every time they blink and pop out broods with no issues) not because of a matter of right or wrong, but just because its an exercise in futility that hurts only yourself.

This post is about envy and gratitude.

The envy lists

I could be jealous of somebody who has had just one miscarriage and went on to have healthy kids after.

I could be jealous of anybody who has ever gotten past a week 20 u/s, especially since there is a part of me that cannot even imagine that I would be so similarly blessed.

I could be jealous of somebody who has had a loving partner to share in her grief, and who has somebody to brainstorm the future with.

But then, on the plus side, there would be people who look at my situation and envy my advantages

I get pregnant every time I try.

Because of my unique situation, repeated IVF and surrogacy is an economically viable option for me.  I don't have to break the bank to pursue these lines of action,  or failing that, adoption.

I have family that are the most supportive that anybody could ask for, I have a work situation that allows me the right levels of flexibility.

I can afford to take a year off(or two) from my career and return to a land of cheap IVF and plentiful surrogacy to focus on the holy quest that is baby-making.

When you put all of this together, you realize envy is pointless. I have my blessings and I have my trials, and these are mine alone. Forget about what other people might or might not have, this is MY lot in life and I have to deal with it. This is the mental attitude that is keeping that monster called self-pity at bay for good amounts of time. Don't get me wrong, self pity drops by a lot, and I hate each and every visit. That is why I said I want to be doing better.

Then there are also gratitude lists:

I'm grateful that I'm not bitter. After I've lost these little precious embryos that would have been my two babies, I've let go and just accepted that they were not meant to be. Its not been easy and there is plenty of grief, but still there is acceptance without rage. Bitterness is something that corrodes one's spirit, and I'm thankful it has not visited me yet.

I'm grateful that if there is something wrong with my babies, the defect is enough to end the process at 8 weeks instead of me finding out during a 16 or 20 week u/s that things have gone very, very south. There was a bit in 'Coming to term' talking about this, and you realize that a lot of the time, miscarriage is not about nature being cruel, its about nature being kind. The cruel part was that there was something wrong to start with, but after that has happened, if nature steps in and halts the process early, you get spared a lot of pain.

I'm grateful that I've realized what I need to do to get through the next few years comfortably- make peace.

I don't know how exactly to achieve this but the two steps I'll be taking is seeing a shrink (who needs to help me not to cope with grief but the thought of giving up my dream to have biological children without falling apart) and then seeking spirituality to make sure that my happiness does not end up depending on any of the goals I have set. This is not at easy but but I'll be making a start in this while I remain in India.

The most important goal is always, always, always, to limit damage to ones self. And that is something really hard to do when battling infertility of any sort.  Its a lesson that also spills over to the rest of life- things do not  become cushy and rainbow filled because you have children, those are actually when the real battles can begin.

I wish myself and everybody else attempting this luck with this horrendously difficult task. We have no control over our own biology. What we can attempt to control, are our selves, our emotions and our reactions.

Thursday, December 2, 2010

Grand plans

I met with this RE in India who came up with an interesting potential cause for my losses: PCOS that was affecting egg quality.  My regular RE had thought my ovaries looked slightly polycystic (~17 antral follicles in each ovary), and he had checked DHEAS and testosterone. DHEAS was in PCOS range (over 200) but testosterone was low, so the PCOS diagnosis had fallen by the wayside. This new guy now wants to recheck antral follicles and also LH and AMH (both of which are elevated in PCOS, and have never been examined in my case).  This offers a possible answer and the fix would be metformin both before and during pregnancy.

I know that there is still a higher than normal risk for miscarriage with the next pregnancy. This is, after all, only an emperical treatment. On suggesting gestational surrogacy, he flatly refused. He told me by all accounts, that I had a healthy uterus, and using surrogates just because I could would be premature and wrong at this point. In all fairness, I have to agree with him. But, I'm not ready to face the prospect of another short lived pregnancy and loss, while back in the States and alone.  I need a good support system and I can get this only if I  a) magically find Mr. Right and get hitched or b) come back to India and try here while being with family. All in all, I've reached the end of my tether as far as going-it-alone is concerned.

Setting the stage for short term return to India will take one year.  I'm willing to put off babymaking for that long. I''ll be only 32 at that point, and by all indicators, would have plenty of eggs left. The only real hurry has always been in my own head. To stay sane, I need plans with contingencies upon contingencies, so here goes.

The Plan 

1)Check genetics (mine and babies) and run every RPL test under the sun. If all is normal, then do nothing for 1 year. Enjoy life and return to the the person I used to be before pregnancy loss.

2) Return to India, start TTCing with unmedicated IUIs after 3 months on metformin.

3) If a loss occurs, then do IVF using 2 different donors ( including my original, who I just don't want to give up on yet) and THEN (with  this RE's blessing),  go to gestational surrogates. This is the part which can be repeated again and again, if need be. 3 losses would be when I'd stop using myself a s a guinea pig, its just too much. With surrogates and a shitload of dough though, its a different thing. I'm really lucky to have these options,.

4) If multiple tries here fail too, then that implies the issue is genetic and with my eggs.  At this point, go to donor embryos and use my body to carry them (hoping that all parts are still functional at the end of this and the issue was never with my uterus in the first place)

5) if this fails too-adoption in India. 

I can deal with the prospect of short-lived pregnancies and more losses, but I need to choose my battleground wisely. Having lived through the last few days mostly easily, I know being at home will do it.  But importantly, finding real peace requires preparing myself  for the final 2 options which involve letting go of a biological child. Once I become ok with this concept (its going to take work) then who cares how long it takes to get there? Life is making me work for a child, I have faith that it has something good (even if its not what I originally envisaged) waiting for me.