Please help-- 3 early losses -- 1 IVF/2FETs

ssoss · #1 (**permalink**) 06-04-2008, 08:28 PM

Hello!

I'm in desperate need of advice. I'm 30 years old w/ PCOS. I don't ovulate on my own. My FSH levels & follicle count is great-- I respond very well to meds-- we had 21 eggs-- 15 fertilized & we had 6 great blastocysts. My RE didn't put me on metaforim. My estrogen levels were over 6,000 before my trigger shot in November -- retrieval (fresh cycle). I was concerned, but the RE was not worried. Could this interfere with overall embryo quality? Also, I am homozygous MTHFR...I was on lovenox...which seemed to help a bit. I also have a high NK assay (but not sure if that really means anything).

My RE told me that because all of my betas (3 cycles-- fresh & 2 FET) started out low & dropped, she felt as if all of the embryos were abnormal (all 6 of our blastocysts). She said that if she were to do another IVF cycle, she would do PGD & also transferr 3-4 embryos at a time (given my history). I'm not sure of PGD-- another RE I spoke with last Friday said that it can potentially hurt the embryo...and that the overall live birth rates of PGD embryos are lower than others-- also that the test can sometimes consider normal embryos "abnormal". I'm not sure what to do...hmm...

I'm trying to decide between a few clinics. I have appointments with all of them (have all of my records copied now so I can take them with me to the appointments). Tomorrow I'm going to Gurnee to the Advanced Fertility Center of Chicago-- for a HSG (that is the doctor I spoke with last Friday). As I said before, he feels as if there were issues with my stimulation protocal before, as well as my lack of that med Metaforim. He's the one that thinks PGD isn't very beneficial. I'm not sure what to think.

I have an appointment June 14th with Dr. Charles Miller. My RE suggested him because he works with women who have endometriosis and other immune issues. His office also does PGD. Not sure what to think on this either. I have to decide between doing another fresh cycle with either Dr. Miller or Dr. Sherhban from Advanced Fertility Clinic.

'm going to see a reoccuring miscarriage specialist at the University of Chicago. My RE gave me her name. Hopefully, she can give me some insight too. It was weird hearing "gestational carrier' from my RE...but she also said that it's premature to go that route right now because we've only done one fresh cycle. Who knows.

Any input at all would be WONDERFUL

...

Lisa94 · #2 (**permalink**) 06-04-2008, 10:16 PM

Hi,
I had 2 miscarriages before being diagnosed with MTHFR and PCOS. I took high levels of folic acid for the MTHFR because my homocysteine was elevated and I also took baby aspirin. I didn't do heparin or lovenox. As for the PCOS, I tried metformin but it was horrible for me, so eventually I took avandia. I, too, had lots of eggs and great looking blasts that would implant and then I would miscarry. For my last and successful IVF, I decided to do PGD. I am so glad that I did because in that cycle we had 12 embryos and as it turns out only 1 was genetically normal. My daughter is asleep in the next room from that cycle!

I just wanted to wish you luck and give you hope. With all the experts you are consulting, I hope that you get a great plan that you feel comfortable with. I am a big believer in getting all the facts and opinions and then trusting in your gut. It may not be clear yet, but it will be and you'll know exactly what you need to do.

ewipp · #3 (**permalink**) 06-05-2008, 06:04 AM

Hi ssoss!!! So glad to see your post here!

Okay ladies, this is a very good dear friend of mine (in real life) so give her all the advice you've got!

I've already emailed you my thoughts on all your questions, I hope you get more here though!

Good luck, girl!! Keeping you in my thoughts!!

BellyBellyBelly · #4 (**permalink**) 06-05-2008, 07:54 AM

I am 30 and I was told that I had bad embryos too. On my third IVFcycle, I traveled to Colorado (from Chicago) to take part in a study that was using a new form of PGD called CGH. SART no longer recomends traditional PGD, although obviously it has worked for some ladies on this board. Even though two REs, including the top in the country had told me I had bad embryos, after getting the results from the CGH testing, 3 out of 5 were normal and 2 had no results because they didn't get a good biopsy. Those are great results, so it wasn't my embryos. I didn't have a transfer on that cycle (long story) and went ahead with a 4th IVF cycle (RE in Colorado again) using immune treatment and no CGH (immune Dr. in Chicago). My gut told me I had immune problems and my high NK cells had to be treated with IVIG. I got pregnant with twins that cycle. So, your story sounds similar to mine in that you are young, make blasts, and are told you have bad embryos. Although, I do not have PCOS, so that could definitely make a difference. So, this probably confused you more but I wanted to let you know my story since it sounds similar to yours.

Not to throw another name in the mix but I had immune treatment on my successful cycle with Dr. Kwak-Kim 847-247-6900. People also have success with immune treatment with Dr. Coulam. I went to see that Dr. at U of C I think you are referring to and while I really liked her personality, she doesn't believe in IVIG. I believed in my gut that I needed IVIG. Her philosphy is kind just try try again. Why don't you go to the CDC website and look who has better stats Adv. Fertility or Dr. Miller. You can go to one of them as your RE and work with an immunologist in conjunction with your RE. Also, immune treatment is incredibly expensive. However, I got my IVIG through Columbia Pharmacy and they made me pay up front and then they submitted it to my insurance. I think they know how to "creatively submit" it to insurance because my insurance wound up paying for a lot of it even though they initially turned me down when I asked for pre-approval.

About high estrogen levels. Mine were really high each time, including the successful cycle. I worried like you that it was interferring and the RE told me that it wasn't. I guess the RE was right.

One more thing...although traditional PGD doesn't necessarily up your odds of getting pregnant according to the statistics, it will give you answers. I really wanted answers because if all of my embryos were bad, I didn't want to keep going through IVF with my eggs and no hope of success. Okay, I probably just confused you more....

aquarianangel · #5 (**permalink**) 06-05-2008, 08:08 AM

Hello there!

So nice to see another chicago IVFer post here.
I could you have written your post myself. I have done two fresh cycles and one FET with FCI. I had two miscarriages from that. I also had a m/c from natural pregnancy two years ago.

I am also weighing my options. I am VERY interested in knowing how your appointments with these other clinics went and how your appointment with the doctor from University of chicago goes.

Like you I have PCOS (but my RE put me on metformin) and also stage IV ENDO. We get lenty of eggs and apparently they look very good. But from my last cycle we retrived 21 eggs out of which only 3 made it. We have one on ice. So I think that we might have an egg quality issue. But all my tests are normal and the last time my RE did not recommend PGD. However she might change that recommendation after my last cycle. since all my tests are normal we do not know what caused my miscarriages.

One not so encouraging note: My friend did 3 fresh cycles with PGD and still miscarried on all three. She has now decided to adopt.

I am on a break right now and doing acupuncture.
Please do let us know how all your appointments go.

ssoss · #6 (**permalink**) 06-05-2008, 02:41 PM

Hey all!

Thanks for your messages! (Elise, you are the best!!) Well, Dr. Sherbhan put me on metaforin today & we start birth control pills tomorrow. Again, I have no idea which doctor I'm actually going to do the IVF with, but I figure I'll start some of the meds they'd all give me anyway. I couldn't get in to see Dr. Miller until July 1st (something about him going out of town & also losing another RE on his staff-- not sure if that is a good thing). I realize that my other doc, Dr. Klipstein, didn't really take my PCOS into account. Today, when they did the ultrasound, they found 20 follicles on the left ovary and 45 on my right. They said I might need to be on metaforim for a few months to calm down the PCOS. As much as I liked my RE, I realize now that there were some things like my PCOS & my really high estrogen levels that should have been watched more carefully.

AJ-- The CGH interested me when I was investigating. It is very INTERESTING that they kept telling you that you had bad embryos. It's so frustrating when you have sooooo many great looking blasts & they say that!! I went to Dr. Kwak! She is soooo nice-- and probably the smartest women I've ever met!! Seriously! I really do believe what she says, it's just hard to afford the IVIG. We did one infusion of IVIG-- it was about $2,000. My NK % assay went from 23% to 35% AFTER the IVIG. She wanted me to do a double dose-- $4,000. My husband & I are high school teachers, we could go to Europe on that money, or use it for adoption. I have BCBS of IL. So far, they have not paid a dime of it. It's SOOOO frustrating!!! What RE did you go though? I read somewhere that Mary Stevenson is doing a study on the effectiveness of IVIG-- a double blind experiment-- which is GREAT because it could possibly prove its effectiveness (and maybe then insurance would cover it).

Aquarianangel-- How was your experience with metaforim? I just started today. My friend Elise told me that it does a number on your stomach. OH BOY! Isn't it soooo frustrating when everything looks normal and you get miscarriages / chemicals? AHHH! I promise you that I will tell you what all of these doctors suggest.

I'll keep you all updated. If you hear of anything-- let me know too! It is actually SOOOO NICE to hear of others in the same situation! Honestly. My husband & I are completely open to adoption. It's such a tough decision, but we thought it through, and it is the family part of the process that is most important to us. I'd rather raise a child or two than none at all. The heartbreaking part is knowing that I may never be pregnant for more than 5-6 weeks, or see a product of my husband & I. Seriously, some of the worst stuff always happen to the best people -- but it makes us all stronger.

BellyBellyBelly · #7 (**permalink**) 06-05-2008, 06:41 PM

Dr. Coulam was doing a study using intralipid instead of IVIG and it was only $500 a dose. I am not sure if that's still going on. I went to see her about a year ago. Maybe that's an option for you.

I used Dr. Kaplan at FCI for my first two failed cycles and went to Dr. Schoolcraft in Colorado for number 3 and 4. When I saw Stephenson she gave me a copy of an IVIG study that she conducted. It didn't show that IVIG helped but the study didn't select women who had elevated NK cells just random women. So, I'd be happy to hear if she was conducted a newer better designed study.

I hear ya on the adoption thing. At a certain point you just want to raise a family and the genetic connections just seems less and less important as you get deeper into this nightmare.

Keep us posted!