Saturday, May 4, 2013

Is Your Body Baby Friendly?

A few months ago (Nov. 2012) when I found out pregnancy #2 was not going to be viable, I requested an RPL (repeated pregnancy loss) panel of bloodwork. It's very common for doctor's to omit telling women about this testing until at least 3+ pregnancy losses. In some cases, there are women who have had 5, 10 or more miscarriages, and have NEVER had this testing done. This just baffles me that we have doctors out there who don't even consider this testing at all and instead just keep telling women, "Just try again. It was bad luck. It was a just a bad embryo."

The reality is that there ARE other factors that could exist causing problems other than just "old eggs" or "bad embryos."
Luckily my RE is receptive to any requests I make and allows me to visit things I have questions about, but he isn't the one who even brought up having this testing done. It was me and my own research that led me to want to investigate blood clotting factors as a possible cause for my pregnancy losses and issues becoming pregnant in the first place. So, I consulted with one of the most knowledgeable resources I know of (my online infertility support group) and compiled a comprehensive list of things which are commonly tested for in an RPL. I printed the list out, took it to a hematologist, and had a full workup done. In case you have ever wondered what is typically tested for in an RPL, this is the list I took to the hematologist...

Prothrombin Time (PT)

Protein S-Functional

Protein C-Functional

MTHFR

Lupus Anticoagulant Panel

Homocyst(e)ine, Plasma

Fibrinogen Antigen

Factor V Leiden Mutation

Factor II, DNA Analysis

Chromosome, Blood, Routine

Beta-2 Glycoprotein l Ab,G,A,M

Anticardiolip Ab, IgA/G/M, Qn

Antibody Screen

ANA w/Reflex if Positive

Activated Protein C Resistance

Prolactin

15 vials of blood later, I was glad I had the testing done, because it turns out I have 4 significant blood clotting factors...

Antinuclear Antibody
Anticardiolipin Antibody
Protein S deficiency
MTHFR


The hematologist tells me that these things are associated with miscarriage (especially when there are multiple factors) as well as autoimmune issues (especially lupus-based on the combination of the first two antibodies listed) and Rx's me daily Lovenox injections and baby aspirin for my next pregnancy as soon as a pregnancy is confirmed. He tells me, "I'm not going to tell you that you have lupus at this time. What you do have is some sort of autoimmune issue going on and your blood vessels are basically attacking themselves."  He tells me this stuff is typically hereditary as well and to do some digging and see if anyone else in my family has had similar issues.

Come to find out my sister was hospitalized for a DVT (deep vein thrombosis) is Rh- (autoimmune related blood disorder) and my mom's first cousin was diagnosed with lupus in her childbearing years and struggles pretty badly with it currently. Additionally, my sister and I are almost positive my mom had an undiagnosed autoimmune/neurological issue. She had very strange uncontrollable twitching in her hands for as long as I can remember, very similar to what you'd see in someone with MS or Parkinson's. I used to tell my mom to see a dr. all the time for it, and it definitely wasn't normal. Because my mom was adopted and is now passed away, this is the extent of my family history on that topic, but who knows if there is more autoimmune stuff I just don't know about? For me, the things I have found so far are enough to warrant more investigation.

I am no doctor obviously, but the inquisitive nerd with a laser sharp intuition that lives inside of me is. haha! Seriously though, ever since I received the news of having 4 blood clotting disorders and an "autoimmune issue" whatever that might be, I have had these voices in my head telling me there might be something there more strongly related to our inability to conceive, our pregnancy losses, and now our failed IVF (despite the fact that we transferred two perfect looking embryos and all other conditions were perfect).

I am also realistic and am not expecting some silver bullet answer to WHY this keeps happening to us. Most RE's and people out there know that miscarriage does just happen sometimes and that IVF is not always successful on the first try. We've all heard stories of people who tried 4+ IVF cycles before magically being successful. But what about those women who try and try and try and it never happens? They either never get pregnant or if they do, they just miscarry. There has to be some other answer besides, "The embryos just weren't as good as we thought they were."

I, for one, am not going to ignore the voices inside my head that are pleading with me to investigate more before I go throwing our 5 remaining frozen embryos into my body haphazardly.
These are our babies, and I am going to protect them the best way I know how, even if they are only microscopic. Our frozen embryos are the only chance for a family we have left at this point. So, I've been researching my brains out, asking other women about their stories, and came upon a recommendation for the book Is Your Body Baby Friendly? by Dr. Alan Beer. As soon as I opened this book I could not put it down!



FASCINATING read if you have experienced...
-pregnancy loss
-unexplained infertility
-IVF failure
-blood clotting disorders
-endometrial lining issues (including endometriosis or thin lining)
-autoimmune issues or family history of them


Reproductive Immunology is still a fairly new field of science and the practice of using in-depth testing and protocols aimed to help those with immunological problems affecting their ability to become mothers is still quite limited. There are very few doctors who specialize in this field, and none that I have found yet in Austin, where I live. Additionally, some of the protocols they practice are controversial and not widely accepted in the medical community. However, I've got to say that after reading this book, I feel like there could be something going on with my body that has just been missed along the way.

Dr. Beer (who passed away in 2006) did not believe that "miscarriages or infertility just happen." He believed the body was designed to become pregnant and carry to term against all odds and in any circumstances, and if it isn't able to do that there is some issue preventing it from doing so. There is a REASON that some women have umpteen miscarriages or IVF failures and it's not just due to "bad eggs" in all cases.  Furthermore, for women who have multiple failed IVF's and turn to using donor eggs as their last hope, they may only experience more heartache if there is an untreated immunity issue present that is actually the underlying cause of their troubles.

According to Dr. Beer's findings, in some cases ectopic pregnancies can even occur due to factors completely unrelated to the integrity of the fallopian tube itself, but can instead be caused simply by high amounts of autoimmune activity occurring in the uterus, like high levels of natural killer cells which are produced by women with autoimmune issues (basically these cells think the embryo is foreign and attack it or cause it to "run away" to a safe place to implant....possibly a fallopian tube).

One of the biggest takeaways I learned in this book that I can apply easily, is that for women like me with blood clotting disorders, Lovenox is needed much earlier than the time of a confirmed pregnancy for successful implantation to even occur. He recommends beginning it on CD6 of the cycle of conception, along with baby aspirin daily from CD1. Many times taking a steroid like dexamethasone or prednisone can also work jointly with the Lovenox to reduce inflammation and improve receptivitiy of the uterus in women like myself, who may have autoimmune activity present. The book gets even more in-depth with various protocols used for specific issues (like Ivig therapy), but I'm not delving too deeply into those very complex and expensive protocols quite yet. I'm taking baby steps to learning more, and I'm not ready to go there at this point.

The early administration of Lovenox and dexamethasone are two things alone that are low risk which could benefit someone in my situation.
I was on dexamethasone during my IVF protocol, but it was discontinued before my egg retrieval. Why?? To me, this makes no sense and I will be asking to continue it post-transfer with our FET (frozen embryo transfer). Many times stopping or starting meds like steroids and even baby aspirin can cause an inflammatory response in the body of people who are hypersensitive, and that is something that should be minimized when transferring an embryo. Makes sense!

During our recent phone convo, my RE has already agreed that it's ok to start Lovenox earlier with our FET to help with blood flow and implantation.
Because there is no egg retrieval (needles going into the ovaries) taking place, there is no risk for bleeding and blood thinners can be started earlier with FET's. There are zero risks to using Lovenox earlier on, so why wouldn't I want to do that to help? I will also be able to continue baby aspirin without starting and stopping this time around.

Given the fact that I have not 1, not 2, but 4 blood clotting factors in addition to some family history of autoimmune issues, I really feel it's worth investigating more. I am not looking to add another "problem" to my laundry list of issues already, but I think it would be totally irresponsible of me to ignore these red flags and keep throwing perfectly healthy embryos in my uterus to no avail, and then be forced to ask myself these hard questions anyways. I am all about being proactive. After all, if I hadn't basically demanded the RPL testing before, I still wouldn't even know I had those, and that is a majorly important piece of info!

Although there are no reproductive immunologists in my area, I have an apt. with a highly recommended rheumatologist on 5/22. This is the closest thing I could find to get more answers and at least he will be able to answer my questions about lupus or anything else that is strongly correlated with these pesky blood clotting factors. Perhaps he can offer insight into safety and efficacy of using low dose steroids to improve pregnancy rates and/or reduce miscarriage in those who experience repeated losses. Either way, I'm glad that I read this book. It basically confirmed the possibility of what my intuition has already been telling me, and I am now armed with a body of evidence to discuss with my doctors and ask the questions I need to have answered.

53 comments:

  1. I'm on dexamethasone right up until I start the minocin/medrol protocol. I'm also on my enbrel (for my RA) which is part of an autoimmune protocol. The only part of the protocol we aren't doing is the IVIG. My last cycle I did not take enbrel throughout the entire cycle and I was a hurting girl by the end of it. Some of my joints were really really swollen and painful.

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    1. Yeah, there must be something I'm not getting in regards to the starting/stopping/switching of steroids during IVF as has been Rx'ed to me up until this point. I had a similar protocol...dexamethasone up until time of retrieval and then I also started medrol, but also discontinued that once we found out it was not going to be a 3dt. They use medrol as part of an assisted hatching protocol for all 3dt's, but that still makes no sense to me. The IVIG is the part that is most controversial and EXPENSIVE. Holy hallelujah it's pricy!

      I am so sorry you are having to deal with RA. I know it affects every aspect of your life when you have it. That is what is so confusing about my own circumstances. I don't have some full blown conditions with oodles of symptoms, but it's like my inner voice is telling me that something is off, even if it's to a lesser extent. A real head scratcher!

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    2. Meh, everyone has their battles that they fight, mine just comes back every morning with swollen hands and feet. Currently I can't get my engagement ring on so that is making me upset. I love my set and I love wearing it...but alas just my wedding band :(

      I also thought the medrol/minocin was for assisted hatched and it didn't make sense that I was doing it for an FET so I asked. They want it to help with the implantation. I hope it works for us :) Otherwise I'm thinking of going down to Denver (the place with the Rancic's went). One of my reps used to be an embryologist down there so she was looking up the SART data with the clinic I'm going to. She said she was very impressed with his results for as few IVF procedures that he does. My RE is super conservative and I feel like if this doesn't work that I need someone who will be a little more aggressive with me and maybe someone who knows more about RA and IVF.

      IVIG also has a lifetime limit, but I've seen it work miracles in patient's that it was the only thing left to try.

      My gut feeling is that my body was so overstimulated from all the eggs and then the retrieval that it was too much to ask it to implant as well. I'm hopeful (kinda) that this FET will work and if it doesn't well I'm getting to the point where I'm almost ok with it.

      Follow your gut, you know your body better than any doctor every will. If you think something is wrong it probably is.

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    3. My hubby and I have talked about the same thing Elizabeth....that maybe everything else my body went through during my fresh IVF cycle was just too much all at once. I do know a lot of RI's recommend not even doing fresh cycles for this reason. It's so hard on the body, but especially in people who are hypersensitive to all the stimulation and inflammation that occurs during the process.

      I'm sure you already know this, but the stims themselves and all the added hormones cause a ton of inflammation. From what I understand, a lot of RI's like to just collect the eggs and then hope they make it to Day 5 to freeze. Apparently many of them believe waiting for an FET is a better recipe for success, and I know a lot of RE's are moving in the direction of doing FET's instead of fresh as well, including my own RE.

      I think there was just no reason he could find to put of doing fresh and just wait for an FET with me, so we went ahead with fresh, but I was actually surprised. I thought he was going to push to turn it into a frozen cycle. Now, I'm wondering if that might have been better in the long run? It's just so unpredictable when you don't know if anything will make it to freeze you know what I mean?? One big learning process!

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    4. I considered asking to freeze everything but the only reason I had was a gut feeling it wasn't going to work and that my body was just too sensitive. I also thought 24 eggs was a lot and that my body deserved to heal to give any embryos a chance to grow.

      I know my body pretty well and it hurt! I felt like my insides were going to fall out after my ET and for almost a month after. I had a nursing instructor who used to say, 'hindsight is 20/20'. She's right :)

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  2. Wow. Thank you for this post. I think I have some reading to catch up on! Good for you for being proactive. It takes some major guts to bring things to your doctor that you figured out through your own research, because you don't always know how welcoming of "suggestions" a provider will be. But you did it. And now you know, right?

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    1. I always go into my RE's office knowing that he is a "less is more" type of guy. I appreciate that on so many levels, because I know he only treats me for things that are absolutely necessary and isn't trying to make a bunch of money off of every little problem I bring up. However, I also know how to approach him with questions now as well. As long as I have one or two points based on peer reviewed research in a journal he respects, I feel more confident stating my case and asking solid questions.

      This book has tons of pages at the end with very condensed snippets from various studies showing correlations of all of the things mentioned in it. It makes it very easy to see the research and apply it to your situation if you have one that could be similar.

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  3. Like I said...you're my most informative IVF blogger friend. I definitely think it is good that you are being so proactive and looking into this. Good luck with your rheumatologist.

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    1. Haha! Your "most informative" nomination still makes me giggle. :) Thanks Jessah!

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  4. whoa! So many tests it's a little overwhelming. Very good to know though!

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    1. Seems like a lot of tests for the blood clotting factors I know, but you're only in the chair once and it only takes one needle while they switch out the test tubes for each one. Yes, very good info. to know for anyone experiencing losses and not understanding why!

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  5. I totally agree with Jessah, you're absolutely the most informative IVF blogger friend of mine :) My head is spinning (in a good way!) from your post. I'm totally getting this book and I can't wait to dig in! I have a consult with my doctor on Wednesday, and I'm absolutely going to talk to him about some of this auto immune stuff... it's really interesting... and it makes sense... at least enough to look further into it! xoxo

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    1. Thank you Aubrey! Yes, get the book please! Very good read. I think you will get a lot out of it!

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  6. I am in the middle of my 3rd IVF and I am on Dexamethasone daily even after the egg retrieval, I am surprised you had to stop before ER. Evidently I will continue it after a positive pregnancy test. I also had an intralipid infusion for elevated natural killer cells. This is treatment has less side effects then IVIG therapy. The first RE I went to would not test me for anything other then genetic reasoning. After our first failed cycle he told me I needed an egg donor. I choose to try one more cycle with him with my own eggs and then we moved to a new RE, she has not mentioned donor eggs. Thank you for an informative post, I will definitely be looking into more testing if this IVF is unsuccessful.

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    1. I am glad you moved on to an RE who was willing to test you for the elevated NK cells. I don't think my RE would even know the full spectrum of autoiummune based testing, and he doesn't practice it either. We've discussed only doing a single embryo transfer for our FET and adding the Lovenox and steroids for it, because I just still have so many unanswered questions. We are willing to stay with our current RE for now, because we LOVE him and trust him, but I think it will be a 3 strikes you're out rule honestly. We have talked about doing 2 more FET's, each with one embryo, and if it doesn't work, it may be time to look elsewhere with our remaining 3 embryos...for someone who can look deeper into the cause and be more aggressive. Let's hope we don't need that, but we have discussed it. Best wishes to you on your 3rd IVF. I really hope that 3rd time is the charm for you!

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  7. I've been following your blog for awhile and just wanted to give you some encouragement now that you know what you are dealing with as far as the blood clotting issues go. I have several factors that contributed to my infertility, including AntiNuclear Antibodies. I actually went to an RE before I married my husband because I had had so many period related issues and wanted to get checked out (as well as discuss BC options... we decided to go with a diaphragm since I didn't want to mess with my already crazy hormones). As part of his new patient protocol he does lots of blood work, and although some of his patients think it is too much, I learned before even being married that I had the ANA blood clotting issue. We ended up using protection on our honeymoon only and after ten months NTNP we got pregnant with our miracle baby boy. I was able to carry my now 5 1/2 year old son to term no problem using a Heparin/Aspirin regime. Flash forward through many years of trying for a second and two miscarriages later. I was so confused as to why I couldn't get pregnant or stay pregnant, even with IUIs and starting blood thinners and aspirin from the moment of ovulation. After more and more testing, I was diagnosed with hypothyrodism and Hashimoto's. That pushed me over the edge and made me realize it wasn't just medication that was going to help me, but something more including nutrition (I was a healthy eater, but learned that with Hashimoto's even the healthiest foods (nightshades such as tomatoes, bell peppers, etc.) can be a deterrent to your health). Our miracle month came with the combination of a Hashimoto-specific Paleo diet, PreSeed from 5 days prior to suspected ovulation on, Evening Primrose Oil capsules, Accupuncture, Herbs, Heparin/Aspirin from the day of a positive OPK, and Prednisone from positive HPT to 20 weeks. My prayer is that this little one hangs on for 13 more weeks and we can deliver another healthy baby. My prayer and hope for you is that you can take your knowledge not just of your blood clotting disorders, but also your body as a whole, and find the best possible combination for YOU to become pregnant and carry to term. I know it is so hard hearing stories of successes when you've tried everything those women have... and then some! But when it comes down to it, each of our bodies are made in such a UNIQUE and precious way. There is no one set of answers that works for everyone. It sounds encouraging that your RE was willing to run such in-depth tests, and it sounds like you are remaining positive in not being satisfied with just hearing that losses are normal. Keep investigating. Keep reading. And keep holding onto the faith that there can be an answer, even if it may be unconventional or unlike the answer anyone else has found to be successful. I look forward to continuing to follow your journey and hope that soon we will all be reading about a precious little life growing inside of you!

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    1. THANK YOU for your comment! I commend you for advocating for yourself and finding the real root cause of your issues and doing something about it. I also commend your RE for testing you and finding the ANA early on. I feel like more doctors should be running at least some of the more major tests for clotting factors for any woman TTC. Having ANA is so strongly correlated with other things, that it's pretty damn important to know! I am also a firm believer in the power of nutrition, and it sounds like changing your eating could have had a huge influence in helping you with your second little one. Wow, it's just amazing what some of us have to go through to become mothers. Your story is so inspiring!

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  8. How 15 vials that is a lot! I don't think they could even get that much blood out of my crappy veins lol. This book sounds very interesting, I may have to put it on my reading list before we attempt embryo donation. I do have endometriosis and I've had one loss, but it was so early and that's so common. I will definitely be looking up if lovenox might be helpful for me. We might only have one shot at this so I want to make sure we do everything possible to make it successful.

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    1. Lovenox is probably only helpful for you if you have blood clotting factors, and the only way you'd know that is to get tested for them. I am still kind of shocked I have 4 of them. Def worth a read if you like reading. :)

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  9. I LOVE how you advocate for yourself. I LOVE how informed you are. I hope your doctor embraces that about you. During our last consult with DR. E the RE he looked at me and said -wow you sure know a lot. I wanted to say - its because of my bloggy friends. :)

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    1. I don't know if embrace is the right word. haha! Luckily my RE doesn't run the other way when he sees me or anything. I do think he appreciates my hunger for knowledge and the fact that I do my own research. He's told me before that I ask questions no one else does and that they are good questions. I just hope that learning enough and advocating enough for myself will actually be enough to get me on the road to motherhood at some point!

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  10. Wow... I'm glad they found something! Excellent book recommendation... I think I will add that to my list.

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    1. Enjoy it Jess! Let me know what you think!

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  11. I think it's awesome how you jump in there to find out everything you can so you can fix it even though it all just seems overwhelming. Also, that book looks really awesome! I have a few people I need to recommend it for and to be honest I may read it for myself, good info never hurt anyone. I am praying hard with all my heart that your FET cycle works out. *hugs*

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    1. Thanks Amber! Sometimes it feels like I'm jumping from one idea to the next, hypothesizing what the missing piece of this puzzle could possibly be. Honestly though, I don't know how to be any other way. I trust doctors, but only to an extent. We know our bodies better than anyone else!

      Look at you...basically telling the RE what days you need an u/s, what day you will O, even though it's way outside the norm. Your whole cycle was successful because you led the way. They followed your lead and respected the fact that you know your body, and now you are pregnant!

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  12. Hey Em! Great post. I've read that book- it's fascinating. I read it a long time ago and your post makes me want to reread it since I now have failed IVF under my belt. I'm hoping and praying your tenacity gets you the answers you need.

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    1. Some very interesting stuff in there mentioned on chronic migraines, endo, etc. that you might relate to more after having the failed IVF. I seriously loved it and feel like much of the info. is ahead of it's time. Just because most RE's don't practice according to this more specialized approach, I feel like it's still valid and it all makes sense. Besides, look at cancer treatment; So many patients are treated under "clinical trials" for drugs that haven't received FDA approval yet have been proven to work in a clinical setting. Stuff just takes time to be studied, reviewed, and approved.

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    2. Thanks Em! You've totally inspired me to read it again... you got me with the chronic migraines and endo!

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  13. It is a great book, I read it a year or two ago, but in my case the blood work did not reveal any abnormalities, I'm still pretty sure that my problem is an underlying immune issue since I have autoimmune run in my family. You are very lucky (even if you don't think so) to have something show up on blood work that you could get medication for.

    Good luck with your rheumatologist appointment!

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    1. Thanks for pointing that out! In a way I am thankful they found something, but in my case, it still hasn't resulted in the RE doing much differently for my protocol and that is the main thing I think needs to change NOW. It's like, OK great I have all these blood clotting disorders, but if we aren't doing anything to take these finding into consideration and applying that info earlier in the cycle, how will it ever even happen in the first place? If Lovenox will keep me from losing a pregnancy by increasing blood flow to the uterus and to the endometrial lining, surely the same mechanism would benefit me actually becoming pregnant. That is all I kept reading over and over in that book. Well, I'm not wasting time. I started Lovenox injections today on our "break cycle" before our FET.

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    2. Maybe the rheumatologist can give you the prescription regardless of your RE's thoughts. CCRM for example would not give me or support anything regarding autoimmune, and there are many like them. You can also call the Los Gatos clinic and have them treat you before and during transfer.

      I came back to add that Gluten is a big no-no for immune issues. Don't touch that stuff at all, and consider going dairy free too to help with inflammation. Have you read Mo's blog loveandlifeinthepetridish ? After a million miscarriages, going gluten free and doing IVIG, she was able to have her beautiful daughter.

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    3. Just shows you how many RE's really do not agree with the autoimmune protocols, if the much coveted CCRM doesn't even visit that either. We've decided if we don't have success with our FET's then we will go to Los Gatos. (We used to live down the road from them before we ever started TTC...figures. ha!)

      Ditto on the gluten! Funny thing is last time I got pregnant, I was actually gluten and dairy free that cycle. I have always tried to limit it and use gluten-free alternatives when possible. However, I've even been cutting out the random slice of bread here or there and being more proactive about it now. I do believe nutrition makes a big difference, and I do find it funny that pretty much the only other cycle I was super strict with it, I did get pregnant. hmmmm I will have to check out that blog. Thank you!

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    4. That is very interesting that you were gluten free for both your pregnancies... Anyway, before moving on to your next FET, you could have Los Gatos look at your blood work and prescribe you what you need while you stay with your current clinic. I'm thinking they might be even better than what the rheumatoid dr. can give you. It would be a good idea to keep your app. with him anyway, for general health reasons, but I would go to Los Gatos to see what they think in relationship to your FET.

      I believe you are in the right path and soon will be pregnant, hang in there!

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    5. I've definitely considered it! I think the pricing is scaring me a little, and since we have 5 frozen embabies, we'd at least like to try an FET or two with my current RE and just the addition of Lovenox and steroids. I think my RE will do both of those without any big issue and who knows...could be the trick?

      It appears that Beer's clinic requires you to submit your records for review before you get a consult, but that they also want more in-depth testing on both partners before prescribing a protocol and the pricing for the protocol is the real scary part. If they say I need IVIG treatment for instance (which is quite probable) with Lovenox, I am not sure I'm ready to hop right into that based on how much it costs for the actual treatment...all on top of the $2200+ I'm already paying my RE for the actual FET. Plus the flights, hotel, etc. it takes to get to Silicon Valley and stay there. I believe their immune testing can only be done at their testing center as well, so there's that. It adds up pretty quickly! Darn crappy insurance that won't cover anything. Blah!

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    6. This was the price sheet I found for them. This is why I'm holding off for now and just praying Lovenox may be all I need...

      http://www.repro-med.net/repro-med-site2/index.php?option=com_content&view=article&id=3:prices-for-tests&catid=2:pages-ett&Itemid=23

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    7. Well, I am just so paranoid since I've lost so many embryos transferring to my body that I would hate to see it happening to you. Maybe my advice to you would be to put only one at a time maybe? Just in case...

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    8. I appreciate that advice for sure. Hubby and I have discussed doing a single embryo transfer for that reason. As much as it is hard to risk it not working with one, it's even harder mentally when it doesn't work out with two. Plus, if we transfer a Day 6 BB blast that looks great, in most cases that should be good enough to produce a pregnancy. So, unless the RE can convince us otherwise with some strong argument for two, we're only planning on putting one in for the FET. Thanks for commenting...it gives me the reassurance to know we are doing the right thing coming from someone with more experience at this.

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  14. This totally makes sense! I'm sure it's frustrating not having an RE that specializes in autoimmune disorders nearby, but from what I've seen in the blogging world, Lovenox is SO OFTEN the answer for women who've had repeated failures with IVF -- not because of their embryos or eggs, just something not working after it's inserted. It's crazy how often that drug seems to solve this, and I would definitely support you in taking it. Apparently it hurts and leaves a bit of bruising, but nothing you can't handle. And baby Aspirin is recommended for nearly everyone, too, so that's an easy one. I'm really feeling good about this next attempt now!!

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    1. OMG does it ever hurt! I started it already on this "break cycle" yesterday actually. I should be O'ing this week, so later than I'd prefer, but many RE's even Rx it for time of transfer or time of O, so better late than never. We figure if it could work for FET, why not try it on our own. The book talks about many people who start Lovenox and become pregnant on their break before FET. Worth a try, but seriously it HURTS SO BAD! It's like menopur times ten!

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  15. Great post, great information. So glad you're getting some answers!

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    1. I have gotten a few answers along the way that is for sure. Still not pregnant though, so hopefully this info. will lead to something good for once! ;)

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  16. I'm so far behind on my blogging. Maybe I'm taking my "break cycle" a little to seriously. Amazing amount of information as always. I'm going to pick up this book for sure! I want this for both of us so bad and I'm so sorry that you continue to struggle with all of this. I often wonder about autoimmune issues but so far I haven't really been tested for anything. They consider my ectopic a fluke because I was on an IUD at the time. It's certainly something I'm going to keep fresh in my mind if this IVF doesn't work. (that is, if I ever get to my IVF!) Big hugs, lady!

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    1. Big hugs right back at you! You are being so patient on your break cycle. I was doing well taking a "break" until I read this book. Now I'm all engulfed into thinking about it 24/7 again. Maybe I should just go to Cancun every weekend, because this stuff just takes up so much retail space in my brain, but I can't help it.

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  17. Great informaion Emily. I also suffer from an auto immune disease. Endometriosis. Although most physicians would not agree that it is. It is! Although I have learned that I sometimes know more about ENDO than most physicians. But like you, I like to use knowledge to empower myself. I am going to read this book just because. Does it address that ENDO is an autoimmune disease? or does it just recognize it as a symptom of one?! Anyways thanks for sharing. Also I had no idea that being RH- was considered an autoimmune blood disorder. I am also RH-...

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    1. I am not sure if the authors classified it as a full blown autoimmune disease. Need to go back and read, but they talked about the correlations with other autoimmune diseases, antiphospholipid syndromes, infertility, and the fact it creates an autoimmune environment constantly making pregnancy difficult...that is what stuck out in my mind. My understanding with Rh- is that it is correlated with autoimmune conditions. Again I don't know much about being Rh-. I do think it's safe to say anytime you experience a condition where your body is producing antibodies that attack your own cells, it's probably autoimmune in nature.

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  18. Hi Emily:
    I have learned on Feb 2014 that I am in the same boat having a Hyper Thyroid and Hashimoto's - I have read all the posts and wondering how you went.
    Please let me know if you were successful or if you are currently treated at Los Gatos.
    We had a miscarriage on Oct 1013 and we are considering seriously to go to US for the treatment but same as you, we are just hanging there at the moment since the prices scare the hell of us-
    Since Feb I am with a Nature path doctor who also ordered all the tests and discovered my issue - Being also gluten and dairy free since then but still no signs of baby yet. I really hope you already have your baby by now :-)

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