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.

12 comments:

  1. Best of luck to you with your upcoming testing. I am so, so sorry for your recent loss. I can relate to your frustration. I have been told at various points that I likely have lean PCOS but unlike classic PCOS, it is so amorphous and poorly defined what lean PCOS exactly IS in the first place, it is difficult for me to consider it a 'real' diagnosis especially in the absence of elevated androgens . Sure, classic insulin-resistant PCOS is a clear entity with at least a somewhat understood etiology but it only takes a little digging around to see how much disagreement there is in the literature regarding lean PCOS and based on the somewhat vague diagnostic criteria, I sometimes wonder if it's a label slapped onto almost every case of ovulatory dysfunction with unknown etiology.

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  2. There are so many things that can be dis-regulated in PCOS, testosterone, DHEAS (the androgens), then there is LH, then finally you have AMH. If you have polycystic ovaries with ANY of these being high, I would believe the PCOS diagnosis, atleast long enough to see how it responds to metformin. I should add that even the insulin resistance of PCOS is not clear cut, and there are lots of women with PCOS with no overt insulin resistance too (who still respond to metformin). Overall, this makes you clutch your head and want to whimper!

    I'm grouching that syndrome has been so difficult to diagnose in me. But I should be grateful I I have so few of the manifestations, which is what has allowed me a happy, healthy life up till now. Classic PCOS (with all the problems that come with high testosterone) is no picnic!

    For women with suspected cases of PCOS like me (and you), I do believe our best shot is seeing how we respond to metformin. Have you ever been put on this drug??

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  3. I've been dreadfully behind on my journal reading this past year, and have been depending on things like JournalWatch to keep me updated - and today I got an email I thought you'd be interested in. And it turns out it's from September! I don't know why it didn't show up on my searches at the JCEM website a few months ago, but anyway, this is something I thought you'd find interesting about thyroid and miscarriages: http://jcem.endojournals.org/cgi/content/abstract/95/9/E44 What I thought was REALLY interesting is that these were antibody negative women - and we'd talked before about how your antibodies weren't really terribly high in the first place. Makes me wonder if your two losses might truly have been completely unrelated, and the second one just really bad luck.

    That same issue also had a study in which the authors looked for an easier way to clinically diagnose PCOS using AMH, follicle counts (I'm assuming antral counts, I haven't read the study because I can't remember my password! LOL), markers of insulin resistance and ovarian hyperandrogenism. http://jcem.endojournals.org/cgi/content/abstract/95/9/4399 If you can't get the full text through your sources, let me know and I'll figure out my password.

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  4. Thanks for the articles! Yes, definitely the losses may have been unrelated, and thyroid could have been the main contributing factor with the first loss, but can't be too certain anymore.

    What I cannot comfortably buy is the fact that with the second pregnancy, that genetic error occurred by sheer bad luck, I think there could have been a physiological issue driving it.

    Remember I was so scared that my days of high estrogen had fallen from around 3-4days, to just 1 day before the LH surge began? This change happened after my loss, and the shift in patterns was very clear to me.

    That was, in retrospect, quite likely to be the problem. WHAT that change was due to is the million dollar question.

    Btw..I got the full text for the second article. Basically the authors say that AMH and AFC are excellent markers of 'ovarian anomaly' but to tie it to PCOS, you need either irregular periods, or hyperandrogenism. And I'm in a big gray zone for the latter, and dont have the former, so can anybody tell me if I have PCOS?!?

    But I keep thinking of Tiara's case- her doc did not do any of these brain-numbing tests on her (right Tiara, if you are reading this), they just looked at her ovaries with the many antral follicles, gave her metformin, and hey presto, antral follicles go down and everything goes beautifully the next time around.

    Sigh...I want that too.

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  5. ThebabychaseprojectJanuary 14, 2011 at 1:43 AM

    Hi Jay, I am now catching up on your blog. let me know the outcome of your genetics consult. What is the recurrance risk of having a livebirth with chromosomal conditions once you have a fetus with XO? I would be interested in finding out your recurrance risk.

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  6. I'll ask, but I'd think the risk would remain unchanged. From what I understand, aneuploidies arise because of random errors (chromosomes not separating properly) during the cell division process. The only way your risk for this could go up is you have some OTHER error in your chromosomes, like say, a balanced translocation, which predispose to errors in the cell division process.

    So, in such cases both parent's karyotypes are examined. My donor's karyotype is normal (and he has produced 4 healthy babies, though one of these is still in utero :)) and so no worries there. My karyotype is 'apparently normal' too.

    My only worry is about the sensitivity of karyotyping as a test, but its not something we can really address. I'm getting the microarray results in a week, my headache will be how to interpret that data, I'm going to need some serious help doing it.

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  7. How did your phone consult go?
    Also, I also truly believe that if a soul is meant to be with you, it will come back to you. I know you are so tired - but hang in there. Sending you strength and support as you navigate your way through to answers.

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  8. I haven't tried metformin but the literature IS convincing that even for those of us who are lean and non-insulin-resistant, it's worth a try. In truth, I hesitate to bring it up with my RE because it seems everyone I "know" in IF land who has been on it, has gotten horrible diarrhea from it (yeah, I know, a small price to pay for you know, getting pregnant! Just to clarify, when I said I didn't have elevated androgens, I didn't mean just adrenal androgens but testosterone as well. Also, I had a 2.0 lh:fsh ratio on my first cd3 b/w but it was happily sitting at 1.0 on my last round. In short, I think my lean pcos dx is many shades of gray. Anyhow, enough about me! How did your phone consult go? What is your current plan? Will you be starting met?

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  9. Haha, I've been uttering that exact phrase 'my pcos diagnosis is many shades of gray' to a lot of people lately. We have a LOT in common.

    I don't have the high LH to FSH ratio either. I have a feeling that is a big factor interfering with healthy ovulation-- if your LH is too high it causes your egg to be released prematurely. My ratio (not done on a true CD3 though) was 0.5, my LH was half my FSH. Since I've always had very nice looking ovulations, its logical that this parameter was normal in me.

    About testosterone, the jury is still out. I've had 3 tests.

    4 months ago, blood drawn in the evening: - 17
    2 weeks after D&C; blood drawn first thing in the morning- 85 (!!!)
    2 weeks after that, blood drawn in the evening- 26

    All my readings fall in the so called 'normal' range for women, but if total testosterone is over 60, they consider it PCOS range. I recently found out that testosterone (and DHEA) are hormones that have huge diurnal variation, levels are highest in the morning and taper off as the day progresses...maybe that explains my crazy 4-fold variations?!?! I'm going to have another fasting testosterone test, see what that shows.

    Though I've never considered myself to be 'hirsute' ie hairy like traditional PCOS cases, I decided to look up how one decides that one is 'hirsute'. This is the way to do it...

    http://www.hirsutism.com/hirsutism-biology/ferriman-gallwey-score.shtml

    If you have a ferriman and gallewey score of above 8 (even above 6 might work)- they will give you the 'hirsute' diagnosis. Its kinda hard to evaluate one's self, but I *think* I might be over 6, even 8.

    What I'm trying to say is a PCOS diagnosis is seriously hard to nail down in some people. I've very clearly got the ovarian anomaly found in PCOS, and I'm in the gray zone for hyper-androgenism. If I am hyper-androgenic, I'm just barely over the threshold.

    Right now, my phone consultation with my San Diego RE ended with him saying I'm not at all sure you have PCOS, lets run more tests. I'm being absolutely bulldog- like about all this, so we'll explore every avenue and lets see what turns out.

    Have not talked to my Indian RE yet, but he seemed to be more willing to say, if you have polycystic ovaries and high AMH, you have PCOS so lets throw metformin at you.

    From what I've read, metformin can really fix the ovarian anomalies (polycystic ovaries, high AMH) by itself and that is what I am waiting to check out. I know what you are talking about with the side effects of metformin, I'm nervous about that too. The one way to avoid that (or so I've heard) is to take a low dose and slowly go up. But I'm too nervous to go in without trying it the next time because the stakes are too high, and it seems likely that metformin is my best shot at getting this to work.

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  10. Thanks CC..no resolution from the phone consults yet- hopefully should get some by the end of the week.

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  11. ThebabychaseprojectJanuary 18, 2011 at 4:58 AM

    Jay, I've only counseled parents who have children with chromosomal conditions (livebirths).. and their recurrence risk is 1% or 1 in 100 (does not matter what maternal age is).. but I don't know the recurrence risk chromosomal conditions in first trimester loss.

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  12. That's interesting that your RE suggested more tests. I have expressed my confusion and frustration in puzzling over my own test results and findings with my RE re: the lean pcos diagnosis and his attitude is that whether we decide the label applies to me or not is irrelevant to the way that he will treat me (as someone who can't get pregnant on her own and over-responds to low levels of ovulation induction), so he has suggested we just drop the issue for now. I do think that it is worth me asking about met, though. It seems many 'classic' PCOSers are given the met before they add even Clomid, and that there's been great success with this approach (as you point out), so I agree that adding met is probably worth a try, at least before making the jump to IVF.

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