Wednesday, December 7, 2011

Not looking so good


We have a few more of my sister's lab results back:

FSH: 9.78

Estradiol: 38.7
LH: 8.18


Apparently, the lab messed up the sample for the AMH test, so she will have to have this redrawn (Aargh! Bang head on desk)


The Denver clinic has a cut-off for FSH for donors at 10, which is awfully close to what my sister has.


For comparison, at age 38 (seven years older than her, and after cancer), my
Day 3 FSH was 5.5, my Estradiol was 33.2, and my AMH was 1.4.

I'm starting to feel like the infertility grim reaper, spreading terrible news about others fertility status far and wide. We haven't talked to my sister about what any of these numbers mean and won't until we speak with Dr. Schl. But it seems not so long ago, that our genetic inquiries wreaked havoc on the anonymous egg donor's happy thoughts of future reproduction with the news that she had a rare abnormality. Ugh.


Once we get the AMH results back, we will schedule a regroup with Dr. Schl. to discuss, but I'm thinking this isn't looking like a very good idea. Seems like if this was my body, I'd of course proceed with IVF, but don't know that it makes sense to try to use my sister as a donor when her fertility doesn't seem so promising. 


If we hadn't had such a long road already, maybe we'd want to gamble on it and hope that we'd be lucky (ha! Us lucky?!), but geez, folks, what we really want is to get out the other side with a child in our arms, and I'm not sure that this is looking like a smart way to get there anytime soon. But maybe I'm misinterpreting things?


Any thoughts? Am I reading this right? What would you do in a situation like this?


Hard to believe we may be back to square one 
again.

Mo



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39 comments:

Jen said...

Oh boy Mo...you really deserve a break. I don't know what to say but I sure hope this works out. Interested to hear what Dr. S has to say.

Anonymous said...

I'm sorry Mo. I also hope your sister is OK. Will she receive any counselling WRT what this might mean for her fertility?

Anonymous said...

I still think age is the most important factor. Her FSH is close to borderline, but I wouldn't be to concerned about it. My first IVF cycle I was 32 with an FSH of 12.7. I had 20 eggs retrieved, and wound up with 9 blasts. Unfortunately I lost the pregnancy due to a genetic condition. So then I went to CCRM for CCS testing. That cycle (at age 33) I had 16 eggs and 11 fertilized. I wound up with three CCS normal blasts- all great quality (and we have severe male factor). My FET is in January. All the RE's I've seen have told me that age is more important than FSH and 9.something is not that bad.

Laura said...

Ok. I just have to say, WTF universe? These are good people deserving of a baby! Why do you keep crapping on them? Thinking of you and hoping this works out for you soon. Because you deserve it.

michelle said...

Doesn't FSH fluctuate so you could have caught her on a bad day? That said I could totally see not wanting to roll the dice at this point. Tough decision. Of course, I used an anonymous donor and got prego with twins at CCRM so I'm pretty happy with that route. I was also happy to not pass on my breast cancer predisposition (esp since one of my twins is a girl) to them so I feel less tied to having a genetic connection. Good luck!

cgd said...

ugh this is so hard. Honestly, you are being at treated at CCRM, they are the experts, I would go with what they suggest.
As always, sending you lots of love and wishing this road was way less difficult

newbie said...

Man oh man. This sucks. I would definitely wait for the results of the AMH - it could be better than her FSH suggests. AMH seems to be the better, more consistent indicator as opposed to FSH.

I'm hoping with that result it will become clear what to do. And I really hope it comes back as good as yours was so you can proceed. Wish they hadn't messed up the test so you could get some answers sooner...

TurtleMama said...

My FSH was 10.8 at age 34 and my AMH was 1.4 and they were able to stimulate my ovaries pretty good. I think CCRM's lab measures FSH on the high side, so I wouldn't worry too much about her FSH. Hope her AMH comes in WNL. Hang in there!

Anonymous said...

So sorry you're going thru this. I do think 9ish is high for 31, and would wait on the AMH. I don't think age trumps FSH. Also re the Previous post, I know people are trying to be positive, but I think some of the "my AFC was x and they got z eggs" stories may not be about "true" AFC, I.e. tested not in an IVF cycle. I think a lot of those anecdotes where ER>>AFC were from the suppression check, after bcps/Lupron instead of a "neutral" non-cycling, non-medicated AFC. Not trying to be a downer, just trying to help. I do wonder if your sister's results perhaps point to a familial IF cause vs. your age/cancer.

I hope things start going your way, ASAP.

manapan said...

Oh crap. I'm sorry things aren't working out for you guys and I hope your sister's other lab results come back better. Maybe it was a fluke? Please, universe? (((hugs)))

gwinne said...

Damn.

Given that and her AFC, I'd be very surprised if her AMH isn't also low. Do these things fluctuate? Sure. But she certainly isn't the most "fertile" of potential donors. They look a lot like my numbers, actually, at 35-37 and, well, you know the end of my story...

I think maybe you take a step back and regroup...think about (a) why use a donor in the first place and (b) why your sister. After all, you've got your own normal embryos in cold storage in Denver. If the goal is as you say "to get out the other side with a child in our arms" then maybe, yes, using your sister as a donor isn't the most expedient method. An egg donor with a proven pregnancy record might be. But using your sister does attempt to preserve the genetic connection that's been important to you in this journey, and maybe that's too important a factor to overlook...

Gosh, Mo, I just want something to go right for you on this quest! I am cheering you on, whatever you choose to do.

birdsandsquirrels said...

Ugh. What is the deal, universe? Can't you give these guys a break? I'm sorry about this latest batch of not so good news.

Honestly Mo, I would be tempted to go ahead anyway. Like some have said, she is young, her FSH is borderline, and there is certainly a decent chance she could stimulate well and get some good embryos and ultimately you get a take home baby. At this point, what do you have to lose? It will be interesting to see what Dr. S has to say.

I wish this process was easier. Hugs.

Jem said...

I don't have any advice, just support for you.

creatingarainbow said...

What about just using a surrogate for your remaining "perfect" embies?

sprogblogger said...

Oh so very sorry. This is just simply not right, not fair, not anything good.

Advice? All advice is assvice at this point, but here's my 2 cents: I went with a pre-screened donor because I didn't think I could stand to go through what you're going through right now, which proves you're stronger than I am (but then, we knew that already.)

You know what I did in your situation. If you want to talk seriously & frankly about what it's like--good & bad, I promise I'll be honest & not blow smoke up your ass--having a child who has no genetic relationship to you (but who is your sun and moon and stars and joy nevertheless) please, you know how to reach me. I wish there were anything I could do to help make this process easier for you. Thinking of you every single day.

myfertilityjourney said...

I would wait to talk to CC.RM in this case and see what they think of your sister as a donor. If they think she'll be fine then I'll go with it, if it's iffy, I will choose another donor. Of course it is your decision and this is so personal, but that's what I would do. So hard, I know. I hope they are optimistic about her. xoxo

Anonymous said...

Hi Mo. You don't know me from a hole in the wall, but if your sis is willing to give it a go, I would let her, so long as you (and she) can deal with it emotionally if it fails. Penty of woment with those stats respond, and as the old saying goes, you only need one. Also, even though she says she doesn't want kids, perhaps she'd be interested in freezing some eggs now, in case she changes her mind down the road?

Anyway, really best of luck!

Allison said...

Why not stim her and see what happens? If its too low for your comfort, then cancel. Maybe Dr. S will be more open on numbers as she is your sister and you guys have had such a hard road to say the VERY least.

I realize this is upsetting, but I see a positive in this as perhaps a fertility saving measure for your sister. She now knows that she does not have a long time to wait if she wants kids. The least this can do is encourage her to vitrify her eggs if she wants children in the future and has the resources to do so. You saved her the pain of waiting 10 years then having a nearly impossible situation.

Anonymous said...

I've been around the infertility world awhile myself and basically had crappy eggs/diminished ovarian reserve at 31 which was subtle (FSH 7, AFC 15, only 1-3 8 cell embryos ever on day 3, donor eggs...)
I agree with anonymous at 342p. In addition, your sister should be counseled to carefully consider whether or not she really does/does not want children and if there's a remote chance she ever will, she should try to freeze eggs now and/or get a sperm donor and freeze embryos.
This indeed may be a familial issue with egg quality.
You certainly could cycle with her though, given her age. You might be surprised at the chance of success C.C.RM would give you at their clinic since her ovarian response is essentially unknown.

Her Royal Fabulousness said...

I don't know anything about the numbers but I am so sorry this isn't going smoothly. :( I am sending you big hugs, because that's all I have.

amiracle4us said...

Sometimes I just want to scream!!! How come some of us just continue to get bad news after bad news!! I am hoping though (reallllllly hoping) that the numbers aren't bad and that they say, YUP...lets go!!! hugs and well wishes.

JNS said...

May I tell you my CCRM story? I went there at age 36 and was told that I had an FSH of 20 and had to do donor eggs or forget it. I have never had an FSH above 9 any other time. I have heard from other people that they calibrate FSH higher there than a normal lab. Most places will take an FSH reading done a Labcorp or any other clinic but CCRM insists on their own labs. I think this gives credence to this theory.

Once I had the 20 I was basically told donor eggs or forget it. I moved on from there and after a few false starts at age 39 I did go through IVF at a different clinic that wasn't that excited about my FSH and the fact that I had 9 antral follicles. I became pregnant and gave birth to a healthy girl two months short of turning 40, and I have two frozen blastocyst embryos.

I guess in short what I'm trying to say is . . . most labs may not find your sister's FSH that high. I continue to think that because of her age that she is a promising egg donor, and 7-8 antrals in someone that age is fine. In fact, I think that all of her labs are perfectly fine, including her FSH. If CCRM balks I would consult elsewhere.

Mo and Will said...

JNS - thanks for your thoughts.

one clarification - this fsh value is not from CCRM - it is from labcorp. my sis has not gone for their testing yet - I don't want to shell out thousands more dollars if we are not going to use her...

Jay said...

Oh, Mo, I'm so sorry you hit yet another roadblock. Don't look at yourself as the grim reaper in all of this, because of you, both your sister and your egg donor candidate have found out some really important information about themselves. If either of them ever wants to have children, finding out what they have gives them a much better fighting chance.

What I'd do in your situation- use a CCRM pre-screened donor. I know you've said you do not feel right with any of them, and god knows I was in that situation myself. I rejected literally the entire catalog of Fairfax, Cali Cryobank and Cryogenic labs, before finding the donor I felt just right about, at Cryogenic labs. Ironically, since then, I've met/seen photos and videos of babies of a couple of the guys I rejected---I remember them vividly because I spent hours agonizing over each choice. The babies are cute, sunny, winning personalities. The little things that made you reject the donors (one of them purportedly looked like Pauly Shore in high school) become laughable when you look at the amazing end product. I'd pick either of those donors in a heartbeat today. What somebody is like on paper has very little with the child they end up producing, I'm coming to find. Sometimes, all it takes is a leap of faith- no matter what, you are guaranteed to think your baby is the most amazing being on this earth.

Danielle said...

Damn. Just damn. I am sorry.

I don't know what I would do, but I know what I would ask myself:

How important is a chance at genetic relatedness?

How important is going into a cycle knowing that as many unknowns as possible have been eliminated by the rigors of the CCRM screening process?

How important are finances?

What is your current perception of how many cycles you have left in you? Would you be willing to trade off doing one more cycle, with all that that entails physically, financially, and emotionally, for the chance of using genetically-related eggs, knowing that you might very well have to cycle again with an unrelated donor? Or do you feel like you would trade the relatedness piece for odds of having to do fewer cycles to reach a successful place sooner?

There is an answer somewhere in here, Mo. Maybe not THE answer, because I don't think it works that way. But an answer for sure.

What are your thoughts on how it would impact your sister to go through a cycle where you have been told the odds are not in your favor? (if, in fact, you have been told this-I'm not clear from reading this whether that's a fact or an understandable worry.)

Elizabeth said...

Wow. I'm ready to bang my head against a wall for you. It's time for Mo and Will to catch a break!

Trisha said...
This comment has been removed by the author.
theelusivesecondline said...

I'm so sorry that the results are not coming back as you had hoped. You guys deserve to catch a break so much. Is there any chance it could still work with your sister?

Anonymous said...

Hi Mo and Will

Anonymous doc from Canada here...Wait and see what Dr. S says. The FSH is borderline for sure, but CCRM may feel it is still reasonable to try. She may still stim reasonably well. Hang tight, hang tough, and wait and see. This may still get off the ground.

Dreams and False Alarms said...

Ugh. I don't know! The appeal of sharing a genetic connection is so strong, but also, after you've gone through this much, a safe bet, like low low FSH and high antral count matter. Emotinally.
And meant to be:
Our donor was not my first choice AT ALL. But these boys, now that they are here, and we are attached, and I am mama (A calls me Mama!) we are meant to be. Meant to be is always retrospective, not prospective.
(((((HUGS)))))

Sarah said...

I am so wishing the best for you. I don't think you have to worry too much about your sister's FSH. FSH can vary dramatically from one month to the next. It's effected by a variety of variables, from diet to stress. I recently turned forty, and in one year, my FSH fluctuated from 4.2 to 10.1 to 3.2. For the lower numbers, I credit my acupuncturist and wheatgrass juice and a lowered stress level. Good luck to you and your sister!

Alexicographer said...

Sigh.

What would I do?

Hmmm. See prior comments re: FSH not predicting much (really). If you want to cycle with your sister, I'd contact the "real" clinic and find out (if you don't already know) whether they enforce the same standards with identified versus not donors. If they do, I'd go to another clinic. If they don't, I'd go ahead and get her tested there, come up with the best protocol (assuming she remains game in light of new info., etc. etc.), and go for it. FSH doesn't predict m/c, or aneuploidy, so I think you are OK there ... worst case, nothing to transfer, but if there is, odds the same as anyone else's.

If you're less committed to your sister being the donor versus maximizing your prospects of a take-home baby, use a donor from the clinic pool, assuming you can find one you're happy with.

That's what I'd do.

I hope (as ever) you two can find the right choice for you, and that it will be a workable one.

Stacie said...

Ah, the bitch known as fsh strikes again. Blah. I am so sorry that this isn't going to be an easy decision. You are so deserving of a time when the stars aligning and everything falls quickly into place.

For what it is worth, my fsh was 13 at age 34. I was told age trumped fsh, and went into cycling with that belief. The lowest # of eggs retrieved was 6 (100% fert) and up to 14 (85% fert). 3 m/cs before we found that I needed to add lovenox. I now have 3 kids, the last of which came this year at age 39. Her numbers are not necessarily doom and gloom.

If you like the idea of using your sister, I'd go for it. You can test the blasts if you want to double check for normals and save the heartache of a possible abnormal pregnancy. I also say if CCRM isn't willing to let you use her as your donor and you want to, go somewhere else.

Many hugs to you all. I am shaking my fist at the universe and demanding that it gives you a break.

It Is What It Is said...

Gosh, so much to consider. Before completely ruling her out, you need to see her AMH which, as you know, is a more reliable predictor. That said, given her AFC, it is likely to be low, too.

Of course you need to discuss it all with Dr. Schoolcraft and take it under advisement.

I feel for you in so many ways, being between this rock and hard place for so long. I want you to have a clear(er) path with the greatest likelihood of success. If that is not your sister, so be it, and move on. No harm, no foul (well, except for the news of her own possible infertility). You just can't afford to gamble and let it ride.

I wish you didn't keep coming up to these road block but I do hope they are steering you away from danger and toward a successful outcome.

Kate said...

I'd tend to go with what Stacie says - age trumps FSH. If your sis otherwise checks out ok, and you've really been struggling to find the right donor, I'd be very tempted to proceed.
Hope the AMH comes back with a good number!

Alexicographer said...

Two quick further thoughts -- I think "they" used to think high FSH "just was," but that there may now be some work looking at what may cause or contribute to it, and that some of those things may have further implications and/or be treatable. Two that spring to mind are autoimmune thyroid problems and clotting disorders. I'm not a medical professional, but it may be worthwhile for your sister to look into these (and/or other) issues by talking with someone who is, to see if testing and/or treatment (on behalf of her own well-being and/or fertility) would be warranted.

Rebecca said...

Like a lot of others have said, see what Dr. Sch says about it. I don't think all hope is lost, but I totally get that this was definitely not the kind of news you were hoping for (or expected).

FWIW, one of my friends' FSH level was 9.something when she contacted him about cycling, and he wasn't overly concerned about that level. She was in her late 30s at the time, and this was several years ago, I think before they were doing the AMH test. She had a successful cycle.

Chris and Joy said...

You are dealing with so many unknowns. I think looking again at what your priorities are would help with a direction. For me genetics was very important and I never felt comfortable with using a donor. As crazy as it sounds it felt too intimate to me to "make" a baby with a stranger. I think in your shoes I would exhaust all possibility of using your embryos in your body first. I would also have a conversation with your sister about possible consequences of IVF on her fertility and let her decide. I would desperately want to hang onto my sister as an option. It would be the only way I could reconcile myself with using a donor. These are such personal decisions only you will know what is right for your family.

Juliana said...

Mo, I've typed and deleted what I'm about to say nearly two dozen times, worried you'd think I'm a crazy person. I'm not crazy (I promise), but a longtime reader who wishes this could be easier for you. I somehow stumbled upon your blog several years ago when I was a single, 21 year old grad student with no interest in fertility issues until my brother and his wife asked me to donate eggs to them. I did- they have the most adorable three year old twin boys now- and since then I've had a special compassion for couples struggling to have families. I don't know how else to say this so, here goes: I would love to be your donor. I know it's a crazy proposition. But I think I might be the type of person you're looking for. Twenty-five with proven donor experience. Very healthy lifestyle and generally healthy family tree (3 grandparents are still alive and well in their late 80s). 5'6", 114, blue eyes, ash blond hair. Ivy league undergraduate degree, and a professional degree. ENFJ. Socially liberal and not religious. Great support network. Live just across the river from you. Not interested in benefitting financially from this. I wont be at all offended if you're not interested in exploring this, but I couldn't just forget about it because I worried about how it might sound. You can reach me at Juliana.C.Aitken@gmail.com. Best wishes to you, always.

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