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Saturday, March 13, 2010

CD8: Damn the FSH! We've Got Follicles!

My site was down for a few days, but I'm finally back online.

So where are we?

Yesterday:
Intralipids
Baseline U/S and bloodwork
Day 5 of Femara

Today:
Stim day 4 (450 Gonal-F/night)

We did our first monitoring U/S yesterday and despite my FSH being in the stratosphere, I have follicles.

6 or 7 of them!

Dr. Italian said this could wind up being my best cycle yet (with him, that is, not with previous docs). He doesn't understand why my bloodwork showed my FSH as being so high but my follicles indicate that the value is either incorrect or meaningless.

The biggest follicle is about 10mm and the others are all smaller but they are grouped together. This is good if the cohort stays and grows together. We also saw follicles on my previously dead right ovary. Could my screwed-up right ovary be back in the saddle at last? There's still a 1.5cm endometrioma on the right side, which would explain some of the pain that I have, but otherwise it all looks good.

What is also weird is that on CD3, my lining was at 9mm. NINE? Yesterday, on CD7, my lining was at 12mm. WTF? My CD3 lining, without stims, is already thick enough to cycle with? This is weird. Just weird. And after two days of Gonal-F my lining is thick enough to transfer with? What the hell is it going to be after 9 days of stims? 17mm? I am starting to wonder if there is something WRONG with my uterine lining. I have never had a lining this thick in my entire life. I have to assume that he is measuring lining in a way that is different than my previous REs because I know of no functional reason for it to be this thick.

But anyways, I am stunned that this cycle might actually work. Stunned doesn't actually convey what I am feeling. When I heard my FSH value I was in shock. I was on the verge of thinking all was done for. A few people said to wait and not cycle, a few encouraged me to press on. So press on it what I'm going to do since I have follicles. I simply do not have the luxury of time anymore.

My next monitoring U/S is 5:15PM on Monday. I started my new job last Monday and I am so petrified to take any time off for this at all. How to get to appointments without it being noticed or frowned upon? I do NOT want to confide in my manager about this as I don't want to set off any alarms. I don't want him rethinking his decision to hire me that I am trying to get pregnant and then run off on family leave. (I wouldn't even QUALIFY for family leave being that a baby born in this cycle would be born within my first year of work.)

Do any of you ladies have any recommendations or advice about how to get to IVF appointments without using a medical reason? I would hate for my new manager to think that I'm a medical nutcase that is always going to be taking time off, but there's no way to reschedule an ER or ET. Ya know?

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Comments on "CD8: Damn the FSH! We've Got Follicles!"

 

Anonymous Anonymous said ... (2:15 PM) : 

I understand age affects number of eggs and FSH affects their quality. At 46, my follicle count on cycle day 7 was 16 last month. My FSH is 83. The chances the eggs in those follicles would turn into a human, just over zero percent, but not quite reaching 1%. I hope you win the lottery odds.

 

Blogger linda said ... (2:33 PM) : 

Yes, indeed. It is nothing short of amazing that you are producing 16 follicles at the age of 46. I would love to hear if you are cycling! Is your FSH consistently at 83? Mine was 9.something in December and this is just a complete anomaly for me.

One other reason I want to cycle is that I've heard that when you do "back to back" cycles, there's a bit of the magic left from the previous cycle...that the new antrals have been somewhat exposed to gonadotropins so they might mature differently.

May we both win this IF lottery! :-)

 

Blogger Mad Hatter said ... (4:18 PM) : 

That stuff Anonymous said about FSH as an indicator of egg quality is absolutely NOT TRUE (no offense, Anon, you're just really misinformed). High FSH, as I mentioned in my last comment, Linda, is a wild horse and no one really knows what it indicates, but it does not mean what they used to think. And I don't believe in statistics - all you need to understand is that women well into their forties with an FSH of 100 CAN and DO conceive. And so can you.

Congrats on your follicles - my doctor was just telling me that doing back to back cycles can really help, so I'm so glad you went ahead with it because it looks like that's what's happening in your case.

As far as work goes, can you go in early on the days you need to leave early, therefore putting in your full day of work? Do you have any flexibility in hours that way? One reason to give may be that you will be having renovations done this month (not entirely untrue) and need to move your hours around a bit to accommodate the comings and goings of the workers...put in long days on the days you can and get all your hours in.

I wish you all the best with this cycle. And it is not a lottery at all - it's science.

Love,
Maddy

 

Anonymous Anonymous said ... (12:15 PM) : 

I once read a study about how each ovary takes its turn to be the dominant every other cycle therefore the results are better when cycled back-to-back. It's not good to put one ovary on the leading gear all the time. Yet the study was about IUI afair.

 

Blogger Julize said ... (12:26 PM) : 

Yay--that's awesome news, Linda. Six or seven eggs would be fantastic wouldn't it? I'd be super happy with that myself.

I didn't realize you did intralipids last cycle. That's really disheartening that it didn't work (or wasn't sufficient). Do your NKs tend to be super high? When I first started working with AEB, my 50:1 killing power was 30+ (per RFU) It took 2 rounds of LIT and one of IVIG to bring it down under 15. Did you have your levels tested before and after intralipids? If it was me, I'd probably do a freeze
all cycle to make sure you have time for the LIT and so you
can test your levels before transfer. With vitrification, you
shouldn't have to worry about losing anything to the thaw.

I didn't realize AEB thinks there are age related differences
in the response to intralipids--that's interesting. I've always
done IVIG up to this point because my insurance covered it
but I had to change insurance companies on the first of
the year and it looks like that lucky streak is coming to an
end. I can't afford to self-pay for IVIG either, so I guess I'll
be testing out the intralipids approach myself in the near
future. Am tentatively planning to cycle in April, if not
sooner.

It sounds like I'll just miss seeing you at Dr. Italian's office.
I have an appt on Monday too (follow-up for my
sclerotherapy) but earlier in the day. I swear, all these NYC trips are starting to wear on me.

Take care,
Julie

 

Blogger linda said ... (2:24 PM) : 

Julie,

Darn! I AM just missing you! What time are you there?

If you still have the old insurance company for a little bit, stock up on IgG so that you can keep doing IVIg. Dr. Italian will infuse IVIg I think.

I don't bother testing my NKs anymore. I just assume they are always high and always treat for them. I know that intralipids bring mine down as Coulam proved it...and I know that LIT does it, too. So I just do everything (shot gun approach) all the time and assume I have mopped it all up with the lovenox/intralipids/LIT. LIT usually takes a double dose for me to get above 50. Another double dose puts me above 99. So I'll do two doses in rapid succession to get my numbers where they need to be.

I am on the fence with freezing. I might do that this cycle. I will have to see how things feel to me as I get closer.

 

Anonymous Anonymous said ... (3:47 PM) : 

Mad Hatter, I'm sorry but what you've said about FSH is contrary to what the foremost RE's claim. If you have scientifc data that disputes their understanding, maybe you should educate them. Better yet, please produce evidence of these women in their 40's with FSH over 100 who have given birth. Please do that!

FSH does correspond with egg quality, which is why anything over 15 in a woman is over 40 predicts a VERY low chance of success. And a woman age 45 faces a probability of success close to zero. I am sure you have an aunt whose neighbor's cousin's daughter gave birth at 46, so what? I know a woman who was born with 3 ovaries, but I would not suggest women hold out that hope for themselves because it is still rare.

Linda, my FSH was consistently under 10, though I've had one very high reading (83) and a reading of 22 - each one time. I'm back to 8.2 last month but I've been told - without exception - that your highest FSH is the one used for prognosis. It IS an indicator of egg quality as a whole. My doctor was Rosenwaks at Cornell and I have seen Licciardi at NYU and most recently Schoolcraft in Colorado. The experts give the same version of the FSH story as I have reported.

DH and I have decided to use donor embryos so we're staying close to NYC for the next cycle.

 

Anonymous Mad Hatter said ... (1:16 AM) : 

List of women over 40 conceiving with high FSH:

http://singledigitpercent.blogspot.com/2009/05/over-40-high-fsh-success-stories.html

Info on AMH vs FSH as indicator of low ovarian reserve:

http://www.centerforhumanreprod.com/about_chrupdate_1209.html

Research showing that FSH is not an indicator of egg quality:

http://www.ncbi.nlm.nih.gov/pubmed/15016786?dopt=AbstractPlus

I'm not saying it's easy - I'm just saying it's possible. And that new research is suggesting that FSH is affected by many factors, so AMH is now said to be a better indicator of ovarian reserve. The study I have cited above debunks the egg quality theory.

Frankly, I just don't find it helpful to throw you-have-next-to-nil-chance statistics at a woman who is in the middle of a cycle. Linda is clearly a very well-researched and educated woman and has made an informed decision to try to conceive with her own eggs despite the challenges. She needs our support, not negativity, at this time. So yes, I'd rather be on the "holding out hope" side for her right now.

 

Blogger Mad Hatter said ... (10:37 AM) : 

P.S. Here's one more GREAT site:

http://pregnancyover44y.blogspot.com/2009/03/time-to-update-our-over-4o-birth.html

It includes the following:

"In 2007, there were more than 105,000 births in the United States to women ages 40 through 44, and over 7,349 to women 45 to 54. In 2007, there were 2,274 live births to women over 42, using donor eggs."

Linda, I totally agree with your theory on my blog about how stats are pretty skewed to begin with - fertility clinic stats do not include the entire population and moreover, only include the women stubborn enough to keep going when they're told to give up - they do not and cannot include those women who do not.

Let's all try to respect and be supportive of everyone's choices here - we are all struggling with this and it does no one any good to spout off dire statements and generate hopelessness.

Hugs to you, Linda - I'm with you all the way.

Love,
Maddy

 

Blogger Julize said ... (2:45 PM) : 

Hi Linda,

I'm actually sitting in the waiting room right now, hoping against hope that the endometrioma on my right ovary isn't back already. It's been twinging all week.

Hope your appt goes well this afternoon. For what it's worth, I totally agree about your mom sharing your saga with other people. Wth? I'd have been seriously pissed. Luckily we haven't had many adoption comments, mainly because there are very few people who know we've been trying.

Take care,
Julie

 

Blogger linda said ... (10:48 PM) : 

Julie,

My right ovary twinged for a good month and a half after my sclerotherapy. Hmm...same symptoms! How is the ovary behaving? Is it producing follicles? My right ovary went dormant after the sclero but it now has two follicles...but there is still an endometrioma on the ovary. So it didn't go away like we'd hoped.

So it looks like I have 6 follicles...I could swear I saw more but then he turned the U/S to another angle and showed me it was 4 on the left, 2 on the right.

I'll be back in on Wednesday for an appointment. I'm going to try for an evening appointment. If you're in on that day, try for a later appointment and then let's meet for coffee (decaf, of course!).

 

Anonymous Anonymous said ... (8:22 PM) : 

Linda, first of all, I apologize if my comments have made you feel badly in any way. I usually just lay out the facts and what I've learned from the experts and let the chips fall where they may and I have a nagging urge never to encourage someone down a path the evidence predicts is futile.

Mad Hatter: I know you mean well but if "evidence" in your book constitutes anecdotal stories of a couple of women (and I do mean a couple) who have succeeded in their mid 40's with skyrocketing FSH levels, then how can I argue against that. Evidence, in my book, comes by way of clinical, scientific, documented research. The only one you provided actually support what I've said, ironically.

Linda, again, I'm sorry if I hurt you. I'm not going to comment anymore. I wish you the best and I do hope you are one of those miracles. Why wouldn't I? Your failure would not make me happy one bit and your success, unfortunately, wouldn't change the stats for 99% of women in their 40s with very high FSH levels either.

Best wishes Linda.
-Margaret

 

Blogger linda said ... (8:48 PM) : 

Margaret,

Don't go away. I am not at all offended. Seriously. I'm a scientist at heart but I'm ever hopeful that if I'm persistent enough that I'll push the stats and I'll get what I want out of it.

I know that at my age maybe 1 in 10 eggs is normal. If that. I also know that the miscarriage rate is 50% at my age. I also know that the stats aren't done quite right. Of that 50% who are miscarrying, if you take out those that are doing heavy duty immune meds to push the envelope, I have to wonder what their success rates are like.

You know what they say: Lies, damned lies, and statistics.

One of the problems is that they don't take into consideration 40-something year old nut cases like me that put in 6 embryos at a time without a thought to it. But there aren't many people at my age getting that many eggs. And if you're under 40 they often tell you to put in just 2 or 3 at a time.

So what do the stats for the over 40 crowd really mean when they're reported to SART? One thing that I do know is that it often means very few embryos transferred. So to find that 1 normal egg in 10, a typical 40+ woman might need to do 5 IVF cycles. A woman who puts in 6 at a time has a chance of finding that normal embryos in two tries. Going back to the former example of the women doing FIVE IVF cycles...how many women even GET to 5? I think the data I've seen says that most women quit after 3.

Simply put, I don't trust the way they do their data. I want to see their data set. I want to see how many eggs a woman made in a cycle. What her doctor advised her for transferring. We don't have insight into the most important details of a cycle; only raw data which leaves more questions than it actually answers.

But again Margaret, please don't go. I like readers to support me but I also like them to challenge me.

Warmly,
Linda

 

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