Thursday, December 15, 2011

My sister's AMH results are back


Well...we got my sister's AMH results back. 

The news is not good. It is in fact decidedly bad. 

Her AMH level is 0.19.

The Denver clinic would like to see an AMH of at least 1.2 for a donor, so 0.2 is really not even close.

Obviously we will not be using her as a donor.

Here is a chart on AMH values:

Ovarian Fertility Potentialpmol/Lng/mL 
Optimal Fertility28.6 - 48.54.0 - 6.8
Satisfactory Fertility15.7 - 28.62.2 - 4.0
Low Fertility2.2 - 15.70.3 - 2.2
Very Low / undetectable0.0 - 2.20.0 - 0.3  


I feel terrible, absolutely terrible. Because I will now have to talk to my 31-year-old sister and explain this news, news she would never have to know if we hadn't asked her to donate. Based on what I can gather, this, in conjunction with her borderline high FSH (9.78) and low antral follicle count (7-8) mean that she would need to try to have children immediately if she wanted them. And she is currently not ready to do this. And my understanding after talking to the Denver clinic is that the likelihood of her succeeding - even now - even with immediate IVF - is slim. 

We will pay for her to have a consult with a reproductive endocrinologist if she wants to talk to someone about what all this means.

But I just feel awful for bringing yet more bad news to someone, this time someone I love.

And us? Well, who cares about us, really. But back to square one we go.

Mo


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61 comments:

  1. Oh Mo, I'm so sorry. It may never be an issue for her if she never decides to have kids, but either way, I'd say you've done her a favor by unearthing information she otherwise wouldn't have had. And forewarned is forearmed & all that. But still.

    And I am just crushed imagining what you must be feeling right now, as well as for the prospect of having to have That Conversation with her sometime soon. Thinking of you all.

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  2. :-( Sorry. Sucks big time all around.

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  3. I just don't understand how things can be this way.

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  4. What a terrible burden to have to bring this news to your sister. That said, it's so much better to be informed, than not. That way she can make an educated decision about her reproduction.

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  5. Dear Lord, I keep thinking you're going to catch a break and then I read more heartbreaking news.

    I've been quiet because I've been at a total loss as to what to say.

    Just know... I'm so so sorry - this sucks, big-time.

    XXX

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  6. That IS low, I'm never really looked up a paper for AMH and antral follicle count correlations but that AMH number does seem a touch low for her AFC. I would think that she is Vitamin D deficient (you mentioned you were deficient, its amazing how these things run in families). If she takes supplements, there is a fair chance, based on what IO found and a couple of others did as well, that it would go up. But that is for her in the future.

    This does not look like it will work for you, at this point...I'm so, so sorry Mo, and I'm sorry for your sister too- I don't know if she wanted kids, but it looks like it may not be a easy road if she does, and that SUCKS.

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  7. Oh no! Not what you wanted to hear at all. I feel so badly for both you and your sister. I guess it's better she learn about this now than later, but I wish it wasn't so.

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  8. Mo - so sorry to read this news. Wish it could have been better. Would it be advisable for her to freeze some of her eggs now?

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  9. Oh, wow. At 31? I'm so sorry, Mo, that you have to explain this news to your sister, on top of everything else. I'm just so sorry...words aren't close to adequate.

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  10. Oh no, I am so sorry Mo! I just cannot believe this keeps happening to you, and I feel terrible for your sister! However, it's better for her to know now then later. Oh goodness, there's nothing good to say here. I just want to send you hugs and let you know I'm thinking of you...

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  11. Oh geez...that's a tough pill to swallow. Hard enough for you to deal with let alone having to give the bad news to your sister. So sorry you have to deal with this Mo.

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  12. Ugh! So sorry to read this. It will be hard to give that news to your sister for sure - but better for her to know now.

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  13. Oh no! Terrible news! For everyone! What a terrible thing to have tell your 31 y/o sister and of course, bad news for you too... I guess she could maybe cycle and freeze her eggs if she wants to have a chance at having bio children... maybe... This is very sad news. So sorry.

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  14. The universe needs to back off! It's just not fair. Sending good thoughts your way (and your sister's way as well). Hugs to you all.

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  15. Oh Mo. I am so sorry about this newest batch of bad news. It is so unfair. I don't know what to say. I want to say a bunch of swear words and kick something and cry for you, Will, and your sister. JFC, could something, anything go your way for once? I don't understand why bad shit happens to good people. I wish there was something I could do to help. Please know that I am thinking of you guys and have such hope for you and your future baby, however it appears in your life. Many many hugs, my dear.

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  16. Can I please cuss on your blog? That is all I can think of: Fuuuuuuuuuuuuuuuuuuuuccccccccccccckkkkkkkkkkkkkkk!

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  17. I am so sorry to hear this Mo. Sorry for you guys, and sorry for your sister. But at least she will not be blindsided in the future and can start to seek some help now. It is nice of you to help with her consult if she wants it.
    I'm wishing you a speedy path to your next step.

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  18. I am so sorry to hear that for both of you. I sure hope things start getting better, IF sucks! Hang in there!

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  19. That's quite low for her age. I'd suspect lab error and run it a 2nd time just to be sure.

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  20. Oh this is just too much. I'm so sorry :(

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  21. Sad with you. And wishing there were something to do or say besides that I'm here. But I am.

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  22. I'm so sorry. I know you said she wasn't ready at this point, but at least she'll know what she's facing in case she decides she does want kids in the future. I'm so sorry for you. The whole thing just bites.

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  23. Well this def. isn't the news you wanted. But my take is this--what if she really wanted to try and cycle? We've all seen people with low AMHs get a few eggs and if they're QUALITY that's all that matters. I know it's a huge gamble but I guess I just hate that they have a cut off point and that's all that matters. If it's all about protecting their donor stats then that makes me mad. I don't know, am I confusing the issue here? Hugs to you for having to deal with yet another setback.

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  24. Oh Mo, I'm so sorry for you and your sister. 9 years ago, and long before I ever wanted kids, I had an ovary removed. The whole ordeal was difficult and left a large question mark on my fertility. I remember vividly someone saying to me, well at least you don't want kids. Ouch. Even though I didn't at the time, that comment still stung. I imagine that is how your sister will feel when you tell her. It's one thing to not want kids now or even in the foreseeable future, but it's another thing entirely to have that decision made for you.

    Hugs to you both. I'll be thinking of you both.

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  25. I am so sorry. I am not sure where your sister lives but I would also want to at least see if her lab values were rechecked due to that low finding. Perhaps that was why it was redrawn in the first place? The old "lab error" story? Perhaps you guys could talk with her doctor as well to help her with her options?
    We have had to do the same with our daughters who both have an inherited disease that is autosomal dominant for which there is currently no PGD available. Knowing early in their lives has helped them make their plans and has helped them prepare. One has chosen to remain childless and the other will
    use donor eggs when the time comes.

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  26. If it weren't for bad luck it would seem you have no luck at all :( UG! I am shaking my fist at the universe on your behalf.

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  27. I am so sorry for your sisters bad news. I am glad she has someone like you to walk her through the process.

    I feel like the hits just keep coming.

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  28. Given how surprisingly low her number is, could it be a lab error? Or at least worth a retest before making any conclusions/decisions?

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  29. Hugs. I wish this weren't happening to you...

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  30. oh man. It is one thing to think you won't want your own biological children and entirely other thing to not be able to. Wow. I am so sorry. What a ridiculously crappy bad luck shit thing to happen on top of all the rest of it. just crazy. I am so sorry.

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  31. I really truly sincerely hope your luck turns around... I watch out for posts from you every day. I am waiting for a day when you post better news and then even better and then great news. This day will come, I am sure. It just has to. If I wouldn't make myself believe it, I don't know how I would be surviving the 7th year of infertility... Things will get better for you - i just don't think they can really get much worse... GOOD LUCK, MO!!! Wish you as much strength as you need and more...

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  32. I'm really sorry that things have turned out this way and your sister is no longer a suitable donor for you.

    Maybe the way to look at it is this . . . she is now going to get the opportunity to find out something about herself that she can actually do something about now. Sure, she doesn't want kids now at 31, but maybe at 37 or 38 she'll meet the right guy and want kids. Knowing this information she now has the opportunity to freeze eggs while it's still an option. Having not gone through this, she may have just been out of luck later down the road.

    So even though you have to deliver bad news, at least she know has an option that she may not have had in the future. All the best to you.

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  33. Oh Mo, I'm so sorry. That just sucks all the way around. :o(

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  34. Oh hon, that's tough, for both you and your sister. Thinki g of you xx

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  35. What a punch in the gut for you both. I am so sorry. Many hugs.

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  36. please remember- YOU are not the cause of her numbers... please don't take too much personal blame onto yourself in this situation.

    i remember being 21 years old and just having had a hsg because of a large tumor i had, the r.e. told me 'if you want to have children, you should have them now- or sooner than later'. at 21, and not being at all ready to have children then, his words sounded peculiar at best, and at worst, 15 years later, ironic and sad. my point being, sometimes information doesn't mesh with the schedule of life, but if it is there, it has to be told. your sister is fortunate to find this info out now- i would encourage her to talk to have a consult so she can really see what her options are. and frankly, i would want my amh re-tested after 2 fucked up results- one stupidly high, one very low for her age and other numbers too.

    either way, this sucks for you mo and will!!! made worse by the effects of the depot. please regroup with dr.sch and see what he thinks. my advice is still to transfer your own embryos now. you need either the information to move forward, or the freaking success to end this torture. will be thinking of you.

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  37. Oh geez, Mo. That is terrible news, for you, for your sister. I'm so sorry - and sorry still that you will have to explain this news to her too. I just keep hoping all these karmic marbles in the jar will come back to you in spades. Soon.

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  38. Hi Mo and Will

    Its Anonymous doc from the great white north again...

    So, yeah, those numbers are not ideal...

    It may be tough on your sis to know that her fertility is not in a good place.

    However, what you've done is give her knowledge, and as a result, power to plan for her future, and to get good with it in her head, that things might not go as planned for her. You've given her the opportunity to be her own best advocate (it always comes back to that) now, long before decisions are made for her...

    I recall having a fiance ditch me when I fessed up that having kids would be a challenge for us, (wow, did THAT ever turn out to be the understatement of the century) I was somewhat pleased to hear recently that his wife (with their 2 beautiful children) left him for another man. I know, I'm a horrible for thinking such thoughts. But I'm human. And he was such a jerk to leave me for that reason.

    Hopefully that will never happen to your sis. She will have all her options laid out before her, and when emotionally she's in a good place, she will choose, or at least prepare a short list of choices, and plan for her future.

    You will have spared her the agony of being 40 and possibly with a partner, and finding out then, that she needs donor eggs or a GC. Being ambushed by such news can be pretty darn de-stabilizing in a relationship.

    It will allow her to align herself with those who would support her, and not hurt or abandon her...and I can think of no greater gift one sister could give to another.

    Mo, Will, you guys still have some decent options...put on your big girl and big boy pants and soldier on.


    We decorated the tree last night and dared to hope...this could be our last Christmas without kids...our GC is 28 weeks along now...

    I wish you and yours all the best this Holiday Season. May all your wishes come true.

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  39. I'd like to borrow a page from Womb for Improvement and leave you with a string of curse words (although at our house currently 'bathroom words' aren't allowed, so I'm not so good at the cursing like a wounded sailor anymore), so cursing 3 year old style:
    crappy, poop, poop, nose dirt, ask!

    I really hope that you get a break soon (for real universe... you hear me!?). I hope that your sister can at least make informed decisions going forward, and really, you did her a favor by giving her a heads up before she was ready to look into it... But I sure do hope that you get a break and SOON! Geez.

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  40. That sucks, but at least she will have the information. sorry you have to give it.

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  41. Sorry to hear that you have hit a wall.

    Regarding your sister, I am thinking that I wish someone had told me when I was younger that my fertility was declining. I would have made different choices back then. Because of you, she now has information about her eggs that she probably wouldn't have had otherwise, and can take appropriate steps to freeze eggs if she wants to.

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  42. Okay...the complete suckiness of this just blows! I'm so sorry.

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  43. Wait, wait, stop. I agree that ... in a probabilistic sense (high FSHer here ... I have seen many "compatriots" get pregnant, even using IVF ... with numbers like that) this does not bode well for your using your sister as a donor. It's not like you and Will are really looking for a badly rigged crapshoot at this point, and unfortunately using ART with numbers like that is something of a crapshoot. Not necessarily a do-not-pass-go kind of proposition; I've got one in a Ladybug onesie (well, no, he's outgrown it, plus the other kids would mock him) at preschool right now. But, not good.

    But, wait, stop. Look at the emphases in what I wrote (not the "right now" bit, the "even using IVF" and "using ART" bits).

    "Bad" numbers (similar to your sister's) do bode less than well for those of us who are infertile, meaning we have had trouble conceiving and/or carrying a pregnancy. We have no idea what they mean in the general population. Seriously. Go ask 100 pregnant women -- they're always so easy to find -- what their AMH and FSH results were before they conceived. How many do you think will be able to tell you?

    You (Mo and Will) are both trained medical professionals -- you know (if you take a step back; don't get me wrong, I realize this is an emotional gut-punch you've just received) and will understand this -- it's a selection problem. You are thinking of the implications of this news were your sister in one group (those with fertility problems) and/or pursuing one course of action (ovarian hyperstimulation). While your sister may well want to talk to a reproductive endocrinologist and I'd certainly advocate supporting her in doing so if she chooses to, REs really don't know beans about the fertile. (Words spoken by my own RE). They specialize in and see people who are having trouble conceiving, and they know (something) about what the technologies they have available can offer -- and their likelihood of working. Absent data to suggest your sister has a fertility problem there is no reason to think that anything you've just learned bodes ill for her prospects of conceiving the old fashioned way.

    (If she wants to do anything, honestly, I'd recommend getting her a copy of Taking Charge of Your Fertility and tracking her ovulatory patterns -- if they're regular and predictable, I'd bet she's fine; if not, then in her shoes I'd seek medical advice -- but not before then, for all the reasons outlined).

    OK. (Climbs off soapbox) I am so sorry for this news in terms of your own family building plans, and certainly it doesn't bring me joy in terms of your sister -- but neither does it horrify me, for the reasons outlined above, and nor should it horrify you (on her behalf). Really.

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  44. Yuck. That definitely correlates with her FSH. Her AFC is decent I think for doing some cycles of egg vitrification. If she wants some info, www.highfshinfo.com offers good resources. It also lists high fsh friendly docs who can help her. If she is near you up in NYC, there are several who will work with her if she does want to move forward. There is also a great support board at http://www.network54.com/Forum/209394.

    As for you, dont know any magical answers except that it is one more mountain to climb. You guys will conquer this.

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  45. yuck. it just seems unreal, you know? how many things can throw a monkey wrench into this situation?

    big hugs to you as you talk your sister through these results and what they mean for BOTH of you!!

    xx

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  46. F*Bomb...no wait...F Atomic Bomb. This is such tragic news on so sooo many levels. Mo...I am at a loss for words why you have been heaped with such an enormous amount of bad luck...and your sister. I am just so so sorry.

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  47. Mo, not sure why you and your sister are going through this right now but I continue to be amazed by your b*lls of steel. For real.

    Big hug to your sister as she wanted to do something so generous and now is going to find out news that she doesn't want to hear. The silver lining is that you might have given her a chance for vitrification that she might not have considered.

    You rawk. Remember that. There are a gazillion of us waiting to read your wisdom each day.

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  48. That is very crappy news - for you and your sister. But I agree with the others who have said that this discovery gives her an opportunity to do something quickly. Had she gone on with life, and not made this off, had she not been the kind soul she obviously is, she would only have discovered this issue when it was far too late for her to do anything about it. Your need for an egg donor has not caused this low reserve - it has revealed it and created a chance to deal with it. Little comfort at the moment, to either of you, I know, but hopefully it will help in the long run. From my own point of you, I can only say that having a totally unrelated and unknown egg donor - and only very minimal choice (yes or know to a very scant few personal details) has not stopped me loving my son WAY more than I thought it was possible to love anyone.

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  49. Good gods, I am so sorry to hear this news, for all of you.

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  50. @Alexicographers: I have to highly disagree with your suggestion for Mo's sister to make assumptions based on regularity and tracking - I can count on one hand the number of periods I've missed and yet, surprise, it took 8 years, moving countries, lots of money, and IVF to have my son. I totally agree that for most people TCOYF is brilliant, but I wouldn't want anyone to stick their head in the sand because of what it says what is most likely happen.

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  51. @orodemniades OK, but you have PCOS, or do I misremember? And out of curiosity, were you ovulating? Because regular periods is one thing but -- well, isn't that the point of TCOYF?

    And don't get me wrong, I think the book is far from perfect and wouldn't actually recommend it in general to the infertile (which group, again, Mo's sister hasn't joined...) because of its rather annoying "You can do this!" tone which, you know, I can't (and I know you couldn't either, and yes, it sucks...).

    But all that said, a big issue with conceiving given a possible DOR/POF dx is whether one is or isn't ovulating ... if not, there's arguably not much ART can do, or at least, we (I am DOR, though now at 43 I'm more just old) aren't good candidates for ART, and conversely, if we are, well, again, there may not be much ART can do (nor should we need it).

    Of course none of that is perfect (I myself started down the IF path due to MF; absent that my DOR might not have been a problem at all, though of course I'll never know) and the real issue is what Mo's sister does want and will want (and face, see above re: MF) in terms of having children -- a huge unknown I think (based on what Mo has said) even for her. But I'm really not convinced that an RE will have much to offer, and (if she wants to pursue it) I'll stand by the idea that using at-home techniques to get more information about her cycles could be useful.

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  52. I am so sorry... That's all I am going to say...

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  53. So, so, so, so sorry...
    How incredibly frustrating...
    Sending you hugs...

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  54. Oh Mo, I'm so sorry about this news. I was hoping that your sister would be the "answer" for you and Will. I can't imagine how you and Will are feeling right now. It's just not fair.
    Thinking of you guys,
    Caroline

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  55. I remember my numbers were really low, but I cannot remember what now with all the history since then, but I do know that I researched and found that it can really go up and down for some folks. I was much older than your sister, of course.

    I am so sorry. For her, for you (FOR YOU) and just cannot stand how hard this stuff is.

    Stand up 9 I guess.
    What the hell.
    With love
    Kate

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  56. So sorry to read this latest news. Not the time or place for debate, but really.... Um, those numbers by definition indicate suboptimal fertility... I really don't think there are a bunch of fertile women out there with those kind of numbers... How do you think docs came up with the ranges? Yes, a few people are the lucky exceptions and are able to have a baby. That doesn't mean people with those numbers are fertile.

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  57. Hi

    I hope you don't mind me jumping in here particularly so long after the original post. I am hoping (not having read all your posts) that your sister is in an ok place after receiving this news..I'm in a similar boat to you, with low chances of conceiving naturally due to what is looking like premature menopause on the horizon but two sisters willing to be donors. I thank my lucky stars for them.

    However, I am also a tad skeptical about reproductive medicine and thought you might be interested in this site...not sure if you have come across it (apologies if you have and I'm telling you to suck eggs!) but thought it might put some perspective on the whole AHM level thing. So, for what it's worth....http://thefertilesoul.com/chinese_medicine/?tag=amh

    All the best...I really hope you succeed in your quest for children (and your sister too, if she decides she wants them!)

    Megan

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  58. I don't know why people keep posting the scale of below 2.2ng/ML = low fertility! Not True! 2.2 is smack dab in the middle of perfectly normal range.

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