Where do I go from here? - Update

MrsRedVelvet · September 2014

Hi ladies, this is a post from a former poster, current lurker. My siggy is a bit incomplete so here’s the history in a nutshell:

Me: 33, DH: 33 Unexplained IF, Hashimoto's Thyroid, Hetero MTHFR. DH normal

TTC #1 since Jul2011

RE#1: (Mar2012-Nov2013)

IUI#1-#3 = BFN
IUI#3.1 = Converted to IVF#1 = BFN (Aug2012)
IVF#1.2 = Cancelled due to low E2 (Oct2012)

RE#2 (Cornell, Dec2012-Dec2013)

IVF#2 Mar2013 = 3dt of 2 embryos, 1 blast frozen, BFP but ectopic hell 3 mos, D&C, methotrexate
FET#1 Sep2013 = BFP but c/p
IVF#3 Dec2013 = BFFN

RE#3 (C.CRM, Jan2014-Present)

Phone Consult w Dr. Sch in Jan2014/ODWU Feb2014
IVF#4 May/June 2014 freeze-all w CCS testing, 6 blasts with 3 normals (4AA, 5BB and 5BA) and 1 indeterminate (2/3 embryo)
FET#2 July 31, 2014 of 4AA and 5BB. Beta #1 9dp5dt = 256, #2 11dp5dt = 326, 13dp5dt: 398, 15dp5dt: 604, 18dp5dt: 1920. 7w u/s: empty sac

I’m thinking of going to see an RI (either Dr. Kwak Kim or Braverman as I am in NY) to do further immune testing and more RPL testing (this was done after loss #2 but the only thing that came out of it was my Hashi’s and a “don’t worry about you genetic mutation of 1 copy” MTHFR). I also am kicking myself for not having the beta-3 integrin done at C.CRM as was told my problem was egg quality but after CCS testing, I am capable of producing genetically normal, great quality eggs.

Any other advice? I feel a compulsion to not give up and already thinking about next steps when I haven’t even had a D&C yet for loss #3. I think this is how I cope but this is all exhausting. I will eventually need a break.

Appreciate anything you girls got. I’m just so completely heartbroken after investing the time into this 8 month journey with Colorado, the finances and logistics. I thought this would work for sure this time

Wishing you all well on this difficult journey

UPDATE: My weird world continues to get weirder. At 7w6d today I had my follow up u/s and was ready to schedule my d&c. Instead my doctor found a yolk sac and fetal pole with a hb of 90bpm and measuring 6w1d. Now, I'm still almost 2 weeks behind with a slow hb so the prognosis is not good. I'm continuing to pray and hope it catches up but I am also trying to be realistic. It's just so strange that at 7 weeks it was completely empty and now there's fetal heart activity. I return next week to repeat the u/s. Sigh. This roller coaster sucks. Thanks again ladies, I posted additional replied below.

CallaLily30 · September 2014

Since you are in NY, have you thought about a consult with RMA NJ? I'm a patient there. We also make genetically normal blasts but have had quite a few losses (only one was from IVF and tested as genetically normal). RMA NJ hasn't given up on me yet and they have had success in similar cases so I'm still hopeful.

They have suggested a gestational surrogate but we aren't quite there yet.

mm29 · September 2014

I think a RI is a good idea. I have heard good things about Dr. KK and mixed things about Dr. B. I have heard Dr. B is great clinically, but doesn't have the best bedside manner. Good Luck!!

Sunny B · September 2014

You've been through it, girl. I'm sorry for your loss and how difficult your journey has been.

I would probably choose to see a RI. I don't see how it could hurt and maybe they will be able to give you some insight.

Sigh202 · September 2014

Hugs.

MrsRedVelvet · September 2014

Thank you all for your kind words and thoughts.

CallaLily - I've heard good things about RMANJ but not sure of their school of thought for immunology issues. My issue has been making blasts in the past and C.CRMs labs got me there with normal embryos too. I have heard their labs are excellent too but am a bit hesitant to give up my "proven" lab given my history. I will check them out further though!

IFinTN - My 5BA is at C.CRM but this is a Day 7 embryo (I call it my "slow grower," but hey, wound up being genetically normal though the implantation rate isn't as high with a Day 7). I was considering going through the depot treatment (with the nast side effects) for peace of mind. I will also ask about Lovenox - no WTF yet with them but I have a strange update above...

Thanks all, hugs to you

Sigh202 · September 2014

FX!

Sunny B · September 2014

MrsRedVelvet said:

Thank you all for your kind words and thoughts.

CallaLily - I've heard good things about RMANJ but not sure of their school of thought for immunology issues. My issue has been making blasts in the past and C.CRMs labs got me there with normal embryos too. I have heard their labs are excellent too but am a bit hesitant to give up my "proven" lab given my history. I will check them out further though!

IFinTN - My 5BA is at C.CRM but this is a Day 7 embryo (I call it my "slow grower," but hey, wound up being genetically normal though the implantation rate isn't as high with a Day 7). I was considering going through the depot treatment (with the nast side effects) for peace of mind. I will also ask about Lovenox - no WTF yet with them but I have a strange update above...

Thanks all, hugs to you

That's interesting that Day 7 have lower implantation rates. Can the same be said for Day 6?

MrsRedVelvet · September 2014

Sunny B said:

MrsRedVelvet said:

Thank you all for your kind words and thoughts.

CallaLily - I've heard good things about RMANJ but not sure of their school of thought for immunology issues. My issue has been making blasts in the past and C.CRMs labs got me there with normal embryos too. I have heard their labs are excellent too but am a bit hesitant to give up my "proven" lab given my history. I will check them out further though!

IFinTN - My 5BA is at C.CRM but this is a Day 7 embryo (I call it my "slow grower," but hey, wound up being genetically normal though the implantation rate isn't as high with a Day 7). I was considering going through the depot treatment (with the nast side effects) for peace of mind. I will also ask about Lovenox - no WTF yet with them but I have a strange update above...

Thanks all, hugs to you

That's interesting that Day 7 have lower implantation rates. Can the same be said for Day 6?

Honestly, I am not sure about Day 6 although I have heard they are on par with Day 5, however Day 7 was noted in a study of having lower rates:

https://www.ncbi.nlm.nih.gov/pubmed/23876530

Sunny B · September 2014

MrsRedVelvet said:

Sunny B said:

MrsRedVelvet said:

Thank you all for your kind words and thoughts.

CallaLily - I've heard good things about RMANJ but not sure of their school of thought for immunology issues. My issue has been making blasts in the past and C.CRMs labs got me there with normal embryos too. I have heard their labs are excellent too but am a bit hesitant to give up my "proven" lab given my history. I will check them out further though!

IFinTN - My 5BA is at C.CRM but this is a Day 7 embryo (I call it my "slow grower," but hey, wound up being genetically normal though the implantation rate isn't as high with a Day 7). I was considering going through the depot treatment (with the nast side effects) for peace of mind. I will also ask about Lovenox - no WTF yet with them but I have a strange update above...

Thanks all, hugs to you

That's interesting that Day 7 have lower implantation rates. Can the same be said for Day 6?

Honestly, I am not sure about Day 6 although I have heard they are on par with Day 5, however Day 7 was noted in a study of having lower rates:

https://www.ncbi.nlm.nih.gov/pubmed/23876530

Thanks for sharing.

Sunny B · September 2014

If I'm reading it correctly, it seems like implantation rates are equally low with day 6 and 7 blasts.

Twinkie0612 · September 2014

I think looking into RI issues is a good next move, since you have had multiple m/c and at least one was a genetically normal embryo.

I just finished my testing with Dr. KK and she identified a few more issues that were not caught by my RE. My RE is very immune friendly and had identified issues with NK cells, but with Dr. KK's testing I found out that I have moderately high NK cell cytotoxicity (ie killing power), high TNFa (inflammatory cytokine), am heterozygous mutated for Factor XIII (clotting issue), and have + APA.

A few notes about Dr. KK. It takes a few months to get an appointment with her, so if you think you might want to go that route, I recommend filling out the new patient paperwork and getting your medical records to her ASAP. I sent in my info in May and just had my follow up with her to review testing and get her assessment yesterday. Also she is pretty restricted on the treatments that she will recommend (usually uses prednisone and IVIG for NK cell and cytokine issues, lovenox and baby aspirin for clotting or blood flow issues). A few of the other RIs have more options as far as treatments go. One thing I do like about her is that she will monitor you through out pregnancy, where some RIs stop after 1st tri.

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