Wednesday, November 28, 2012

No longer "unexplained"

I received a phone call today from my RE.  Remember how I had some blood work updated a while ago?  I saw the results online, but nothing really stood out except my white blood cells and platelets, which are always low.  I even briefly spoke to my MD about it at my annual visit, but nothing came up.  So when the RE wanted to speak to me about it, I assumed it was just normal protocol.

Except it wasn't.

Tonight I found out that I have premature ovarian aging.  My FSH is elevated beyond what it should be for someone my age.  This means that my eggs are "older" than they should be for a 31 year old.  It narrows our window of time for trying.  It also means that I likely only produce about 3-4 "normal" eggs per year, whereas a regular 31-year old only produces about 3-4 abnormal eggs per year.  So our chances are much, much more slim than the regular girls.  It also means that the quality of my eggs is not as good, and more pregnancies result in miscarriages.

That is all that I know about it so far.  I'm reading up like crazy right now.  The few articles I have looked at say that this is one of the most overlooked reasons for female infertility.  They also say that FSH is not enough to diagnose premature ovarian aging (POA, from here on), and that testing AMH along with FSH is a better detector.  From what I can tell, though, my FSH is quite too high.  It's at 11.8.  A year ago it was 8.8, which is still on the high end of the spectrum.  Other articles say that there are actually stricter age requirements for this test.  According to those requirements, even my "normal" test of 8.8 a year ago is out of range for a 30 year old (FSH should be under 7). 

My doctor said that it does not mean we won't get pregnant.  He says that since we are still young (how I hate hearing people say that... I don't feel young in this journey at all), and since I conceived once on IUI, our chances are still good.  He suggests trying IUI but possibly moving onto IVF sooner than later too.

I think I am in shock a bit.  I was near tears earlier, but now I find I can't seem to cry. 

If you know any other bloggers who have dealt with this, I would love to find them.  I'm not quite at the premature ovarian failure stage yet... though maybe that is around the corner. 

So it's been a bad day.  I had to go to the dentist and have my mouth frozen, go to the optometrist and have my eyes dilated, go for a meeting with a financial guy about setting up a will (borrrrinnng!), got this phone call AND AF officially came to town to top it all off.  I just guzzled down a Bailey's and hot chocolate, but I'm considering downing that bottle of rum in the cupboard...


20 comments:

  1. I know of a few. Just a couple of of well known ones to get you going. Both of these ladies are great resources.

    Jessica from Too Many Fish to Fry: http://jjiraffe.wordpress.com/
    Keiko Zoll from Infertility Voice: http://theinfertilityvoice.com/

    Finally, I'm so sorry. News like this is devastating.

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  2. I'm so sorry babe. I don't know anything about what you have been I know the feeling of shock of being unexplained and being told your young and have time and there is no reason you can't get pregnant to bam hello we have a reason. If you need to talk I'm here. Hang in there babe!

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  3. I had the sane diagnosis ... I took some herbs and vitamens and it went back down... then got pregnant naturally! See a natropath and he/she can gear u to what u should be taking!

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    1. And yay for your beautiful baby!!!! Thanks for the reminder of your success with this.

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  4. I had the sane diagnosis ... I took some herbs and vitamens and it went back down... then got pregnant naturally! See a natropath and he/she can gear u to what u should be taking!

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  5. I also found out I had high fsh after my failed ivf. It jumped close to 10 from 5.5 I think in6 months. My re acted like it was a death sentence for ttc, and I was devastated. I researched the hell out of it, and planned a second ivf immediately, however my re reacted as if it wasn't soon enough. After speaking with Amanda above who hot pregnant naturally, I did too a few weeks later.

    It is a scary thing to research, and looks grim, but I think it's it just unknown for re's how to deal with it. I think coq10 and other vitamins helped me tremendously. And you have to research cases of people that became pregnant after this diagnosis! There are a lot out there, and it definitely kept my hopes up. I think in 2 years, I've only had one good egg drop so that is 40 eggs in 2 years including the ones the retrieved for ivf. Crazy!

    Try, as hard as it is, to be thankful you found a reason now and be aggressive with treatment as you feel comfortable. Sometimes it goes undetected, so it's good you got tested again! 11 does not seem out if control and 31 is young, so there is still time to catch that good egg. Think of it this way, it's nearly time for that egg to come around. Ivf will help them see the quality of your eggs, although I still had a lot of inanswered questions afterwards.


    I will try to find those posts of mine for you. It was shocking news to find out for sure, but almost a relief to know there was a reason. But I know how you feel.


    I'm sorry, but do not think of it as the doom and gloom that re's do! Keep your research positive!

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  6. I hesitate to give you this one, but she has pretty extreme POA it sounds like: http://mybumovaries.blogspot.com. I hesitate because she is 9 weeks pregnant. I don't know if that's uplifting in the current situation or if it just feels like another blow.

    Hang in there. Knowing is better that not knowing!

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    1. I actually find these pregnancy success stories to be really encouraging, so thank you!

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  7. I'm so sorry you've gotten this diagnosis.

    I was going to recommend mybumovaries to you as well. I know it may be hard to read since she's pregnant, but it may give you hope as well. She was given very low odds of ever conceiving with her own eggs, but it happened for her.

    I'd like to echo what some of the other ladies have said about trying supplements to boost egg quality. It might be worth a try. There's some evidence that CoQ10, DHEA and vitamin D can improve egg quality. I honestly think they helped me. I have a bottle and a half of DHEA left I can send you if you're interested. (Sometimes it's hard to get ahold of in Canada.) You can email me at daphoenus@gmail.com.

    Hang in there. Hope is not lost. *hugs*

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    1. Agreed! These supplements can really help! Just be careful with the DHEA, here is the post where I was diagnosed with borderline high FSH, and some info on the DHEA. And the posts following this kind of explain what happened with all that leading up to my pregnancy.

      I started taking the DHEA from the recommendation of my RE, although it's unprescribed, so I bought it online, and it's not regulated by the FDA, so I think that some vendor bottled testosterone as "DHEA", and it really screwed with my testosterone levels and probably screwed up my IVF. :(

      The coq10 however is just fine to take. I got a two pack at costco, and took that along with other vitamins.

      http://www.unruffledlanie.blogspot.com/2011/12/just-girl-really.html

      Also, looking back at my posts from that time, it seems my RE thought that HGC shots during IVF could make a difference, so I think I was planning that for my 2nd IVF.

      Glad you got all this support from your readers! You'll beat this!

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    2. Thanks to you both. I will check out your posts Lanie. It's helpful for the reminder since I don't always remember who has which condition unless I'm looking ofr it.

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  8. Raising hand - me.

    I was diagnosed with diminished/decreased ovarian reserve (DOR) in January. FSH of 12.6, 12.7, 13.1. I'm 31. AFC of 10. I fully understand the shock you are in.

    Traditional Chinese Medicine believes that you can turn back your reproductive clock through diet/lifestyle changes, acupuncture, herbs and other supplement.(CoQ10 is one of the key supplements my acupuncturist recommended to me) I've been working on it for the past 10 months. Even though I am not pregnant I believe that TCM can really help us.

    We tried our first IUI w. injectables in September but the cycle got cancelled because I responded far too well to the meds. Based on my FSH levels and AFC I was supposed to be a poor responder but I wasn't. What I wanted to show you with this is that nobody can tell you how your body really reacts. You have to try it to know.

    I have read many stories about women with DOR falling pregnant naturally but just as many needed the help of ART. Because everything I read is pointing towards that age is really one of our best weapons (I hated that statement in the beginning as well, now I see it as one of MY personal advantages) we are now pursuing our first IVF cycle in the spring.

    Take the time you need to heal from the DX. It is a shock. I'm hear if you wish to talk.
    Hang in there. This is not the end for us.

    Hugs, Lya

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  9. OH Hon! I am so sorry....I would love to say at least you have an answer, but that doesn't help here at all....I agree there are many things you can do to try to help. TCM is definitely one way to go. My TCM guy swears he's gotten more old ovaries to get pregnant than young ovaries...I know he's just talking, but there has to be something to it!

    Keeping you in my thoughts dear...hugs!

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    1. It IS helpful to have an answer. And I do plan to follow up with TCM/naturopathic medicine for sure.

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  10. Deep breath, my dear (I know - easier said that done). First, know that this is not a test of egg QUALITY, just a rough predictor of QUANTITY. Some REs don't even depend on it anymore. My FSH is 11.6 and neither of my REs thought it was the end of the world. That's because my AMH and AFC are high (get that AMH drawn tout suite - you can do it any day of your cycle) and I've always been a good responder. There is no way to test egg quality other than to get an idea of how well things go with IVF. Really. This is one of those things where there is a ton of bad info on the web and you can scare the crap out of yourself. Age is a better predictor of quality and you're doing fine there.

    PS All the herb stuff out there to lower your FSH? You are born with all the eggs you will ever have. Herbs will not make you make more. They may artificially lower your FSH, but it is not making you make more eggs, so why bother other than for the psychological benefits of fooling yourself into thinking it's "better?" Quality is a different story, but when I see stuff about "Drink blah blah blah to bring your FSH down" I cringe. It makes no bloomin sense.

    Hang in there!

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    1. Thanks! I still have lots of questions, but I've not lost hope.

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  11. When I was 32 my FSH was 9.3. I was told that was on the high end of normal for my age. 3 years later, that number did not disqualify me from a shared risk refund plan for IVF. AMH is a much more useful indicator of ovarian age and egg quantity, along with your antral follicle counts on day 3 and your age.

    I am dealing with slightly lowered egg quantity(my response to meds is okay, not bad, but not great), but I am 35 now. If I could go back and change how I approached treatment that first year, I would move faster on to IVF and not spend(waste) too much time doing acupuncture, diet and supplements, and IUIs.

    It is a scary diagnosis. Wishing you the best.

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  12. Sorry to hear about the diagnosis. I'm in a similar boat and there's a lot of scary info out there. When I got my terrible AMH results (I'm 36 but have the ovarian reserve of a 43 year old, apparently) I fully expected my RE to talk to me about using donor eggs. She didn't...she just wanted us to skip IUI and go straight to IVF. She also put me on CoQ10 to help with egg quality. I think age has a lot to do with it. Even though you might not have as many eggs left as you should, being younger means that whatever is remaining should hopefully be of decent quality. Plus, FSH is just one number...they have to look at it in conjunction with a lot of other stuff (including how you respond to IVF stims) before they can count you out. You're still in the game!

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  13. Hi Girl... We are the same age, and although my story is different from yours, I wanted to chime in with the tests I have had done in case they can help you. As Hapa Hopes mentiones, FSH talks about quantity and AMH is more of an indicator for egg quality. My FSH came back normal, but my AMH is on the low side, so it is consistent with cero embryos developing (after fertilization has occured) on two IVFs with a good response on egg numbers. I would ask for a Clomid Challenge Test to have a better idea of your FSH and AMH combined. They test you on days 3 and 10 while you take clomid. CQ10 and DHEA are always recommended for egg quality and DOR, so it wouldn't hurt on your case. Good Luck and do not hesitate to contact me with any questions. HUGS

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