Saturday, February 26, 2011

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.


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.

11 comments:

  1. Wow. That is incredibly insightful. My gf has PCOS and thyroid issues, however had a successful pg/conception with the help of Femera. It's amazing how much more there is to learn. Apparently, I am quite the study myself. Hope NYC is treating you well. Sometimes a whole lot of change can sure help us deal with the crap that is thrown our way.

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  2. So would taking thyroid meds not help the problem? I am woefully uninformed on thyroid antibodies b/c I was negative for them.

    This has been a whirlwind few months for you. I hope that the good changes whirlwinds, like getting in to see a good geneticist, come more frequently than the frustrating ones. I'll be interested to see what you're yet-to-be-found geneticist has to say.

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  3. Jay, just wanted to say thank you for educating us all. I had to have a blood test prior to deploying. I really didn't pay attention to the laboratory results (nor did the Dr.) as long as it indicated I could deploy. After reading your article on Vitamin D deficiency, I went back and checked my laboratory records---and low and behold, the only thing which was not within normal range was my Vitamin D--in fact it was extremely low. At any rate, I made sure I bought a 180 day supply of Vitamin D so that I can improve it while overseas.

    I just wanted to share this with you and thank you for making me more aware!

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  4. C- thats a good question, I don't have the answer.

    2 mechanisms have been proposed of how anti-thyroid abs(ATA) contribute to infertility
    1) Shortage of available thyroid hormones- fixable in theory by giving thyroid hormone.
    I should add that thyroid hormones have succeeded in reducing m/c rates in the first trimester in woman with ATA
    2)ATA is a readout of generalized autoimmunity (activated T cells, NK cells, maybe other autoantibodies are present too.

    That study suggests that women with the FMR gene mutation have the 2nd problem. This one is much harder to fix. If women have the FMR gene, PCOS and ATA antibodies, have managed to conceive but have lost the pregnancies repeatedly, or having BFNs in IVFs even with prednidasone or IVIG/intralipids, then one might want to consider surrogacy, IMO. Of course, you should also try to first determine if the pregnancies were chromosomally normal.

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  5. Jendo- you are so welcome. It makes me happy to think that good, constructive things have come out of what happened last year.

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  6. 3 short months - wow you have learned so much in such a short time. I continue to be so impressed by the way you are your own advocate and have learned so much information, and shared it with us. I hope all this education gives you the answers that will solve the mystery forever!

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  7. This is so interesting! Thanks for this. I have been diagnosed with PCOS and my anti-thyroid peroxidase antibodies in labwork registered at 871 (should be less than 35). While The Hubs and I have talked about IVF and decided against it (for right now), we are wanting to try IUI's (always assuming our RE will let us - right now he "doesn't feel comfortable helping us to persue a pregnancy" at my current weight.). I wonder if it affects those the same way?

    Thanks for your comment on my blog, btw. I really appreciate the support!

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  8. I just love when I come across informative posts such as yours - thank you! We have yet to undergo any genetic testing but perhaps it is about time we did so.

    You have had a very busy three months! I am glad you were able to get home for the initial part of the painful post-loss journey, and it is fortunate that you've had the move & resettling to keep you busy.

    Looking forward to finding out what the geneticist says when you get to him/her.

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  9. ThebabychaseprojectFebruary 28, 2011 at 5:17 AM

    Jay, for peace of mind.. go ahead run a Fragile X test. Fragile X is caused by an expansiion of a CGG repeat in a region of the FMR1 gene. Women who are premutation carriers of Fragile X do have infertility because they have premature ovarian insufficiency.. this does not sound like your case at all. But, Fragile X is mandatory now for all women who undergo infertility treatment. This is probably more information than you should know..

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  10. yes, it should not matter whether you are doing IUI or IVF, the anti-TPO antibodies have to be 'managed'

    You might want to talk to a practice that takes all the usual steps to deal with a too active immune system during pregnancy, and you should make sure you have enough thyroid hormone as well, you most probably have to be on supplementation.

    Best of luck!

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  11. Stasis is the worst of all possible states. I agree wholeheartedly. And also that change is hard. I'm glad you had that nurturing month in India. It's very hard to move under ideal circumstances. When circumstances are less than ideal, it can be excruciating. You're also right about it never ending (or certainly feeling as though it never will). But each day that goes by you assemble more knowledge. And sooner or later (if it hasn't already) that WILL translate into power.

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