Not Sure Where I Belong?

KaciRoo84 · January 2014

I used to say, "I don't have any KNOWN fertility problems." However, I'm not sure anymore? My husband has a balanced 21/22 translocation- which means that some of his chromosomes are "rearranged." This does not affect him and he's "clinically normal." It can affect his offspring. We found this out when it was determined through Karyotype that our son (born February 2010) has a RARE form of Down syndrome- known as Translocation Trisomy 21.

My husband's balanced translocation also comes with a 75% miscarriage rate and a higher chance of having a child with a chromosomal disorder. Having another child with Down syndrome doesn't scare me. The health problems associated with Down syndrome scare me. The fact that we were able to have our son is a miracle in itself. Obviously, we didn't know prior to our son's birth that my husband is a balanced carrier.

We decided that IVF with PGD would be our best option for having a healthy child. I think I went into the IVF process with an overly optimistic outlook. I'm 29 years old young with no known fertility issues. I assumed my body would simply respond to the IVF meds and some how we'd end up with a baby on the first try. I was WRONG.

My RE started me off on the usual dose of stimming meds that he gives to women in their 20's- mostly egg donors. On day 5, I had blood work and another sonogram. They called the next day (day 6) with news that my estrogen was insanely low- 27! Nurse said to increase dose and she'd see me in the morning for my next sonogram. Well, after that sonogram (day 7)- RE said we were too far behind from where we should be. My follicles weren't showing enough growth. He said it would be best to cancel this cycle and start a new one in a few months with much higher doses of stimming meds now that we know my ovaries are lazy. I was producing eggs- but not near enough for PGD testing. 75% of our embryos will be unbalanced to begin with due to my husband's balanced translocation. Therefore, it's immensely important that I produce A LOT of eggs for retrieval.

I kept asking WHY my estrogen is so low, but RE couldn't give me any answers? I don't have any signs of early menopause. In fact, my period has always been like clock work- with and without being on birth control. No cysts. No PCOS. Nothing.

RE said that with my next cycle he will start me off on the same dose he gives to his 40 year old patients. I felt like he should be more concerned with my estrogen level, but he seemed to shrug it off?

Have any of you been in a situation like this or similar? I'm just hoping to get some insight...maybe a better understanding? I feel so defeated!

Any advice or expertise would be greatly appreciated. Thank you.

Milagros315 · January 2014

Hi Kaci! I don't have any advice because I'm new to all of this, but I wanted to say that I'm sorry for all that you've been through. I hope that you get some answers soon so that you feel comfortable moving forward!

STBMrsMiller · January 2014

Hello Kaci! I'm 28 and have 40 year old ovaries (diminished ovarian reserve). Before we started IVF, my RE tested my AMH level (anytime) and my FSH and antral follicle count (both cycle day 3) to determine this diagnosis. Did you have any of those tests done? Together they're indicative of the number of eggs you have left. I'm not sure about those all being normal and just having a low response, but I have seen that different protocols can really change results.

KaciRoo84 · January 2014

I did not have any of those tests. The only "testing" they did was where they run some type of dye through your Fallopian tubes...I was told everything looked "good." I'm going to ask my RE about the tests you mentioned. Thank you so much!!!

Twinkie0612 · January 2014

@KaciRoo84 you should have had your FSH, AMH, and antral follicle count done on CD 3. I don't know why your doc would skip those tests, they are like a guide to how well you will respond to stims (or at least a good indicator).

I will tell you that I have normal FSH and AMH levels for my age (31) and I still don't respond well to stims. For IVF #1 I was on a lower dose of stims and only got 6 eggs, 5 mature, 3 fertilized with ICSI. All three of our embryos were really poor quality and arrested before transfer. For IVF #2 we switch protocols and upped my stims. This time I got 8 eggs, 7 mature, 5 fertilized normally with ICSI. Our embryos were better quality and one made it to early blast for transfer on day 5. That cycle ended in a chemical pregnancy. We are on our third attempt at IVF and I am on the max dose of stims. I'll find out next monday at my first monitoring u/s how if the increase of stims has made a difference in the number of eggs we will get.

Good luck, I hope you get the response you are looking for from your next IVF!

LeggyJeggy · January 2014

I'm sorry you're going through this. We did IVF for MFI and there was no indication that I wouldn't respond, but I didn't. I just did a clomid challenge test last cycle where they measure your FSH pre/post 5 days of clomid. Mine was high after the clomid but I've always had a normal day 3 FSH. It at least is an explanation for my poor response to stims. They usually only do it as normal testing for older women. Good luck!

healz413 · January 2014

I'm relatively new to IVF myself, but I think that one of the things about the estrogen levels is that it tells you how your body is responding in terms of producing eggs (the growing eggs produce the estrogen). If I am correct with my understanding of this, then your RE may not be talking about what do about your estrogen levels because he assumes that if he increases your stim levels, then your number of growing eggs with increase and so will your estrogen levels.

Also I had a cancelled IVF cycle in December due to poor response. It really sucks. We will be trying again in February .
Were you by chance on the birth control pill before your IVF cycle? If so you might have been oversuppressed, which could explain your low response even if your AMH and FSH levels are fine. This is what my RE believes happened with me.

STBMrsMiller · January 2014

LeggyJeggy said:
I'm sorry you're going through this. We did IVF for MFI and there was no indication that I wouldn't respond, but I didn't. I just did a clomid challenge test last cycle where they measure your FSH pre/post 5 days of clomid. Mine was high after the clomid but I've always had a normal day 3 FSH. It at least is an explanation for my poor response to stims. They usually only do it as normal testing for older women. Good luck!

I forgot that we did this as well, and we actually turned it into our first IUI cycle. Compared to every other cycle, this one was the cheapest! And bonus for giving the doctor good information prior to starting IVF for stim dosing.

Our original plan was, as someone mentioned above, doing two back to back cycles in order to bank embryos. It wasn't successful for us, but it's a great plan if you're thinking of having more children but are concerned about response in the future to stims.

thebeefamily · January 2014

Your RE needs to order Cycle Day 3 blood work which can tell you why you didn't respond to the medications appropriately. It tests your FSH, AMH, Estradiol levels on the third day of your cycle. I'm surprised your doctor didn't order blood work on you even though your main issue is MFI.

Rinn1983 · January 2014

If you feel that your RE isn't doing what he needs to be doing and just shrugs you off, you need to find a different one. I had an RE that I spent a lot of money with only for him to never diagnosed me with PCOS. I went to a different doctor and he knew what was wrong with me with the first appointment. Good luck!!

kz's_girlygirl · January 2014

Hi there- I'm sorry you find yourself dealing with these issues! I have a chromosomal issue as well. Not the same one, but a paracentric inversion. It basically allows fertilization to occur, but cleavage won't happen if the egg is affected by the inversion. Pretty much the same odds- and that is exactly what played out in our first IVF. We had 4 mature eggs, only one fertilized normally.

I also don't respond well to stims. We did a few inject cycles prior to IVF using the same meds and same doses. The most I ever got was 7 retrieved and 4 mature (for our IVF, and I was on 400IU gonal, 300 menopur the entire time.) PGD isn't something we need to do because any carriers of my inversion will weed themselves out immediately after fertilization so I definitely know the panic of not having enough eggs.

Like others have mentioned, get those tests done! It may or may not make a huge difference in your treatment, but at least you will have the information and can potentially make meds changes based on some solid info.

I hope you get some answers soon, and get a plan in place that will help!! Good luck

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