AMH Results / FSH, E2, LH Results / Phone Regroup with Dr. Schoolcraft / IVF Protocol

And now I’d like to fill you in on what has happened since the ODWU.

AMH

My IVF nurse, H, called with my AMH results. I had been eagerly awaiting these results, as my previous two AMH tests had turned back wildly different numbers.

Columbia: November 2011:
AMH 0.44

Cornell: July 2012:
AMH 1.1

My AFC has also been all over the map, ranging from an AFC of 2 to an AFC of 12. Dr. Schoolcraft had said that the higher AFC count goes with the higher (Cornell) AMH number, whereas the lower AFC count goes with the lower (Columbia) number. Since my AFC  during my ODWU was 11, I’d been expecting an AMH of 1 or 0.8 or something like that…

That didn’t happen.

“Your AMH is 0.2,” Nurse H said during our call, and my heart sank.

This means that the Columbia number of 0.44 was right all along. AMH declines at a rate of about 0.2 per year. Mine declined at a rate a little higher than that, this past year.

Nurse H said it has nothing to do with quality, just quantity.

She said that if the FSH is normal, then this is a really good sign. The higher the FSH, she said, the lower the quality of eggs—higher FSH indicates that the body is working really hard to find/recruit eggs. This does not seem to be the case with me.

She said that 0.2 AMH is typical of their population. But my AFC of 11 is atypical in a positive way, as is the fact that I have been pregnant a lot. 

The lower the AMH, she said, the less they have to work with, but FSH and AFC are also big players.

She assured me that they’ve had people cycle who have a .01 AMH, or whose AMH does not even register.

When I voiced concern over my AFC being all over the map, and worried that I might have an AFC count of 2 or 3 come January—just randomly, and then perhaps the next month the AFC would be 11 again—she said not to worry; the AFC is not the big player when it comes to starting a cycle. FSH, however, is the big player, and so they check it to be sure it is within normal range.

She said that with an AMH of 0.2, DHEA would probably be recommended. [But it wasn’t, as I’ll explain later, because of my Factor V Leiden heterozygous.]

Vitamin Cocktail

I was then given my own “Poor Responder Supplement for Women” list, which was almost identical to the list I’d already been following. The Folplex I’m taking because of my MTHFR heterozygous— “MTHFR might indicate that you can’t absorb folic acid adequately, so we put you on a ton of folic acid,” Nurse H explained.

Morning

3 Myo-inositol capsules, 750 mg each. (I take Jarrow brand. I switched to capsules based on Nurse H’s recommendation and because the powder was a bit of a pain to take.)

500 mg Vit C

500 mg Omega 3s

200 mg COQ10

1000 mg L arginine. (Don’t pay extra for the branded “free form” kind–it is all free form.)

1 Baby aspirin

1 Folplex. (1 folplex = 2.2 mg folic acid, 25 mg B6, 1 mg B12.)

1 Prenate. (I take a raw food prenatal, 3x per day. Capsules with powder inside. I figure with all the other supplements I’m taking in the morning, there is no way my body could manage to break down and absorb a hard horse pill of a prenate, too.)

Noon

100 mg Pycongenol

200 IU Vit E

200 mg COQ10

1000 IU Vit D3. (My vitamin D level is 35, and 30 is normal, but because winter is upon us and Vitamin D is good for depression, I took it upon myself to add this to my cocktail. It’s important to choose Vitamin D3, cholecalciferol.)

1 Prenate

Evening

1000 mg L’ arginine

200 mg COQ10

2 Myo-inositol capsules, 750 mg each.

1 Folplex

1 Prenate

Mammogram & PAP

My Family Health Plus insurance has been approved at this point, but at the time I needed to get a baseline mammogram and yearly PAP for CCRM, it had not been. So I did a lot of research to find a “Scan Van” that would be in Jamaica Queens for a day, and where I could get a free baseline mammogram in extraordinarily tiny rooms inside a bus. (Finding a free mammogram at age 38, by the way, is not easy! Most funds are for women 40 and over.) I could not believe how painful the mammogram was—it seemed outrageous painful, as if the machine would rip off my breasts! Then I went to Planned Parenthood for my PAP, where I was surrounded by teenagers in the waiting room. I am happy to say that the mammogram came back normal, as did the PAP.

Day 3 Bloodwork

Very, very long story short, I managed to find a place to draw my Day 3 bloods (FSH, E2, and LH) and send them to CCRM. This was a pain in the arse, too annoying (and expensive) to explain in detail, compounded by the complications caused by Superstorm Sandy. Also, CCRM sent an additional bloodwork kit to me by mistake, which happened to arrive the morning after I’d had the hospital send my blood serum to CCRM—which made it seem as though the hospital had mistakenly sent my blood serum to me. But luckily, no, it was a mistake. CCRM and Fertility Labs of Colorado are mystified by this extra kit that was sent to me, have no record of sending it, and cannot account for the mistake. After all I went through to do my Day 3s, that last bit of panic caused by the Mystery Kit was certainly unwelcome, and it also made me feel some doubt about CCRMs/FLCs fastidiousness. But of course when you are paying 30K for a service, any small mistake seems huge. I have to remind myself that mistakes can happen all along the way, no matter how excellent they are at what they do.

But my test results, I have to say, came back with lightening speed, and with the wonderful words from Nurse H: “Your hormone results came back, and they look great.”

Now: November 2012

E2 = 40

FSH = 6.8

LH = 2.8

Wow. My hormones are actually slightly better than they were 1 year ago!

1 year ago: November 2011

E2 = 42.9

FSH = 7.34

LH = 4.38

Also good: My FSH is exactly 3x higher than my LH, which is what they want to see in order to rule out PCOS.

Nurse H warned me that just because my numbers look better now than they did 1 year ago doesn’t mean I am more fertile than I was a year ago. But the fact that they haven’t gotten worse is a good sign.

She said that my body is fertile, and I am able to ovulate normally, but perhaps I have a higher than average percentage of abnormal eggs–which of course we already pretty much knew.

Still, this is good news because it means that I will most likely respond well to the stimulation.

DHEA

An IVF nurse called to tell me that Dr. Schoolcraft does NOT want me to take DHEA. I was flummoxed, as I had been looking forward to taking it—-there’s so much anecdotal evidence to support its positive effect on egg quantity and quality. When I asked why, the nurse briskly instructed me to ask Dr. Schoolcraft during our regroup.

Pre-Regroup Talk with Nurse H About Estrogen Priming 

It’s important to note that before this regroup, although I had not received anything officially, Nurse H told me over the phone what my IVF protocol would be: a straight antagonist protocol with no estrogen priming. When I asked why no estrogen priming I was told that Dr. Schoolcraft would not give additional estrogen to a woman with Factor V Leiden—no matter that it is heterozygous (not homozygous, which is far more concerning), and no matter that neither I nor anyone in my family has ever had a blood clot. Basically it is just this stupid single allele of a gene I picked up from my mother or father that is doing nothing in my body—but it prevents Dr. Schoolcraft from giving me estrogen priming. And estrogen priming prevents a woman from having a dominant follicle, and a dominant follicle will lead to the cycle being cancelled that month. Awesome. “Having a dominant follicle on Day 2 of your cycle is pretty rare, though,” said Nurse H. But, also, some say estrogen priming makes the body more responsive to FSH and can cause more oocytes to react to stimulation. So I had some questions about that. “He’s not going to put you on estrogen,” Nurse H warned me. “No matter what.”

Phone Regroup with Dr. Schoolcraft

Because of Superstorm Sandy, neither Planned Parenthood nor the Scan Van Project sent CCRM my test results, as promised. So I had to call and ask again. Once Nurse H had received all of my normal results, we could go ahead with my IVF Calendar, and I could schedule a $108 phone call with Dr. Schoolcraft, if I wanted to. I did.

I prepared a few questions for our call, most of which I asked and got answers to. He was a bit late in calling because he was tied up in surgery. His voice was quite calm and soft, which was somewhat soothing.

Q: What is the overall percentage of chance of success for me?

A: Well, it all depends on how many normal embryos we get. If there are zero normal embryos, obviously, there is zero percent chance of success.

Q: How many eggs do you predict I will produce? 

A: Eleven. [This is based on my AFC of 11 during my ODWU.]

Q: Of those eleven, how many do you predict will produce normal embryos?

A: Based on your five pregnancy losses and your AMH, I predict about 1 or 2 normal embryos. I expect 1 normal. There’s a good chance of 1 normal. But there’s maybe only a 30 % chance of 2 normals.

Q: What are the chances of success if we transfer 1 normal embryo?

A: 45%

Q: What are the chances of success if we transfer 2 normal embryos?

A: 65%

Q: What grade of embryo is “normal”?

A: 6AA is the best, but an embryo can have a grade of much less than that and still be normal. Basically any embryo that makes it to the 60-cell blast stage is considered normal.

Q: What are the chances of my having zero normal embryos?

A: Well, it’s possible. But I expect 1.

Q: What is your opinion of my AMH of 0.2?

A: It’s low.

Q: How many eggs/how much time do I have left before I run out of eggs?

A: It’s hard to say. It could be one year. But it could be 2 or 3 years. There’s no way to know for certain.

Q: What are your thoughts on my low AMH and my normal AFC, FSH, E2, and LH? 

A: It’s a little odd.

Q: Why the discrepancy?

A: It’s hard to say. But perhaps it means that the low AMH is not such a big player.

Q: Is it possible that although I have an AFC of 11, only a few of those 11 oocytes are “active”? Does it work like that?

A: No.

Q: If my hormones are normal, why am I having such severe night sweats in the days leading up to my period? I mean so severe that I have to get up and change my pajamas in the middle of the night.

A: I don’t know. That sounds like an FSH of 40, not 6.8.

Q: If I did not have Factor V Leiden heterozygous, would you do estrogen priming with me?

A: [Pause.] Perhaps.

Q: What do I lose out on by not having estrogen priming?

A: The only thing you will lose out on is the suppression of the dominant follicle.

Q: What about the growth rate of the eggs—will it cause the eggs to grow at quite different rates, moreso than if I’d had estrogen priming?

A: No–the growth rate of the eggs is always different, regardless of estrogen priming.

Q: Why are you saying that I should not take DHEA?

A: I’m not singling you out, I say no to everybody. The data we have so far does not suggest that it is helpful. Also, it increases clots, so to take it with the Factor V Leiden would be kind of crazy. Of course, half of our patients are already on DHEA by the time they get to us. DHEA, chinese herbs, you name it.

Q: I read a 2012 study in Human Reproduction, “Negative association of L’arginine methylation products with oocyte numbers.” L’Arginine is in the vitamin cocktail, but this study reports that it is actually NOT good to take during IVF. Do you know about this study? What is your opinion?

A: I know we can’t prove that L’Arginine is helpful. There just isn’t the data to support it. But we don’t think it can hurt. [It seemed to me that he had not read this study and didn’t know about it. ]

Q: What do the supplements in the vitamin cocktail do?

A: It’s all voodoo. There’s no data to support that any of it works, and there have been no human trials.

Q: Wow, really. Even COQ10?

A: Well, we know that COQ10 is good for the reproductive systems of mice. So if  you’re a mouse [he chuckled] it’s great.

Q: What days of the week do you do retrievals?

A: Every week it’s different.

Q: So I might get you and I might not.

A: That’s right.

Q: But I can schedule my transfer with you?

A: Yes, it usually works out that we can do that.

Q: Anything you suggest I do at this point to increase my chance of success?

A: No. But I’m looking forward to seeing how you respond to stimulation [said cheerfully and genuinely–I appreciated his enthusiasm, but could not come up with anything to say in response, having not had a chance to absorb everything we’d discussed].

My Reaction: No Room for Error or Bad Luck

I didn’t expect a better prognosis, but it is still difficult to swallow that so much is hinging on one good egg. I know it takes only one egg, but still…there’s no room for error or bad luck.

It is difficult for me to accept that IVF is perhaps the only way for me to have a biological child. To get pregnant naturally would be easy, but to get pregnant naturally with a healthy egg…the chances of that are so slim, so very slim.

On the other hand, I have a lot going for me: good hormones, good parts, good lining, active ovaries, and the best IF care in the country. And the best IF doctor telling me that he expects 1 good egg. And if I go with that expectation, I am looking at a 45% chance of success—a much higher percentage than I would get at other clinics in the country.

IVF Protocol

Then came my official IVF protocol, via email from Nurse H.

It is a straight antagonist protocol requiring 4 medications (plus Lovenox and Dex): Menopur, Follistim, Cetrotide, and HCG.

CD 1: Menses

CD2: Go to local clinic (I found one here in Long Island that will do it for $450) for a suppression check. They will check to see if I have a dominant follicle and will make sure my hormones are within normal range.

CD3 – CD7: Begin Stim Meds

Menopur/Repronex: 2 vials in the AM

Gonal-F/Follistim/Bravelle: 300 units in the PM

Lovenox (due to Factor V Leiden): 40 mg daily

CD8 – CD12: Cetrotide/Ganirelix. First dose in the evening, then before 8 a.m. daily throughout stimulation. (I don’t know dosages yet.)

CD 13: I believe this is when I will get my HCG trigger.

CD 14: Tentative Retrieval Date

I am responsible for scheduling: IVF Physical; Back-up Freeze; IVF U.S.; Genetic Counseling (for CCS)

I will travel to Denver:

Two options:

*Arrive in Denver on CD 5. First appointment at CCRM on CD 7.

*Local ultrasound and lab appointment on CD 7. Arrive in Denver on CD 8. First appointment at CCRM on CD9.

Closing Thoughts

Here we go…

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2 Comments

  1. Thanks for sharing your story! We have relatively similar numbers (although mine are worse than yours) and I have my first phone consult with CCRM on Dec. 12 (Although not with Dr. Sch – it was 7 months to see him). I want to take notes from your blog so I’ll know what questions to ask! Best of luck and let us know how everything goes!

    Reply
    • Oh, the best of luck on the 12th, and thereafter! I’m very glad to hear this blog can be of help to you—I try to keep it as detailed as possible because I know how helpful informative blogs have been for me. Keep me posted on your journey, as well!

      Reply

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