In my never ending quest to figure out why we haven't been able to get pregnant easily, nor keep a pregnancy once it happens, I've done some personal research on RI (reproductive immunology) here and there. RI is a somewhat limited scope of practice within reproductive endocrinology, and to say that it's controversial would be an understatement. There are very few physicians who focus on treating the immune system as a cause of infertility. The ones who do believe strongly in it's importance and are quick to defend the protocols they prescribe to their patients, many of them claiming to help the women no one else can help.
Most RE's who DO NOT look at immunology on an in-depth level as part of the infertility patient's treatment plan are likely to point out that "there's not enough large scale double blind peer reviewed research." I get this. Even as a lay person, I am extremely selective with which studies I think are worthwhile, and it's not hard to recognize which studies simply show correlation vs. true causation. The infertility field is FILLED with studies showing causal relationships between various lifestyle factors and IVF success/failure rates. For instance, as you probably know, just because someone drinks less than 3 glasses of red wine per week, it doesn't mean that is THE THING that caused them to become pregnant through IVF. It just so happens people who drink less than 3 glasses of wine might also tend to eat healthier, sleep more, and engage in a host of other healthier lifestyle practices, which could ultimately affect IVF outcomes...You see my point.
Still, I do think there is something to be said about treatment options that might not have the huge body of double blind research backing it up quite yet. It's very commonplace to treat cancer patients with drugs that "show promise" through clinical trials. Some of the most effective cancer treatments available today were once only available through clinical trials and that is HOW they were discovered to be so effective in the first place. That is how I kind of view the field of RI right now.
There may not be a sufficient amount of well-designed RI studies that would garner complete acceptance for many of our RE's at this point in time. However, even my RE admits,
"We think there's something to it (autoimmunity as a factor in infertility & pregnancy loss)." He is also quick to follow that up with,
"We just don't agree with many of the treatments being used on patients, not until there is more research showing sufficient proof."
So, here I am as a patient who has now transferred 5 seemingly normal blastocysts with no success beyond a chemical pregnancy. Was my lining just not optimal? Were our blasts genetically or chromosomally abnormal is some way? Was it just a bad batch of eggs altogether? OR is there some sort of autoimmune issue causing my body to see each embryo as a "foreign invader" and attack it?
There are quite a few doctors who believe some women have heightened levels of activated natural killer cells in their uterus, which basically attack embryos looking to implant. It's even theorized that because activated natural killer cells only live in the uterus and not the fallopian tubes, ectopic pregnancies occur in some cases. I have personally had 3 early losses now, one of which being a suspected ectopic. So yeah, it does interest me and make me scratch my head a little, wondering if there's any chance this could be part of our issue? I also have a family member with lupus and have tested positive for APA's (blood antibodies) myself. Both factors are autoimmune in nature and could be seen as "smoke" which might lead to fire in my case.
I already blogged about the book Is Your Body Baby Friendly before, but if you haven't read it and want a Cliff's Notes version of the principles I'm talking about, feel free to check out these videos...
Failed IVF, Chemical Pregnancy, or Miscarriage
Implantation Dysfunction
...More Videos on
Infertility, IVF & Pregnancy Loss
There are definitely two sides to the story for women who do seek immunological treatment to become pregnant. There are those who experience years of infertility, including multiple pregnancy losses, failed IVF attempts, and even donor eggs before seeking treatment for the "underlying immunological cause" which seemingly was the answer the whole time. They found THE THING that worked for them, and with some very individualized tweaks to basically "turn off" their overactive immune system, went on to have their own biological children.
Then, there are other women who regret opening the giant can of worms that is RI; Expensive tests done by very few labs in the country, somewhat untested treatment plans (by the larger medical field's standards), some traveling to Mexico for non-FDA approved treatments, and thousands upon thousands of dollars spent and more time wasted, only to end up with no baby. Some of these same women have even gone back to their original RE after no success with RI, and THEN became pregnant without any immune protocol whatsoever. So obviously, even if specific immune testing revealed abnormalities in these women, they didn't have success with immune treatment but ultimately DID without this special treatment? How do the RI's explain these cases then?
My own RE still contends that our losses and failed IVF's have most likely been due to genetic abnormalities in the embryos (and more specifically those coming from the egg). There is a plethora of research out there to back up his viewpoint that this is the most feasible argument. However, what if I am yet again one of the very few % of women who doesn't just have "flawed eggs" and it's something else?
I have been extremely hesitant to even toy with the idea that there could be something autoimmune related going on with us, because of the mixed outcomes I've seen out there. So far, I've been continuing to put my trust into my own RE's extensive
expertise of more than 30 years, while also reading about all the other
cutting edge stuff going on and bombarding him and any other
doctors who will listen to & answer my questions. Ha!
Hubby and I have been discussing seeking a 2nd opinion for a while now. I guess a forced break following surgery and knowing we only have two embryos left in the freezer lit the fire under my ass. We had a Skype consult with Dr. Geoffrey Sher (in the videos above...one of the more well-known RE's who practices RI) on Monday morning. I read his book
IVF: The ART of Making Babies before we ever did IVF, and I am familiar with how he practices from watching his videos. There are other popular physicians like Braverman (NYC), Kwak-Kim (Chicago) and Beer's Clinic (CA) who delve pretty deeply into the autoimmune stuff. To be clear, I'm not jumping ship on my current RE at this point in time. I've asked Dr. V first how he felt about us seeking outside opinions out of respect, and he is all for it. Dr. Sher gives FREE consults to anyone who wants one so why not, right?
Just as I suspected, Dr. Sher would like me to do a blood test for activated natural killer cells; Specifically the K562 Target Cell Test. I have been curious this whole time if I have activated natural killer cells, so I am fine with doing it. I appreciate Dr. Sher ordering the test for me pro bono. I have not paid him a dime. The test is done through
Reprosource in Boston, as they are one of the few labs in the country who run this test. They will refer me somewhere to have my blood drawn here, and I will just Fed Ex my sample to them. If it's found to be negative, nothing further will be needed as far as immune testing. If it is positive, then further testing can be performed.
I am doing this K562 test with extremely OPEN eyes; Knowing that while Dr. Sher might truly believe in the importance of it and I'm more than curious to find out the result myself, a good deal of his business is built upon finding a "reason" the patient would need to seek help from him...because most RE's out there do not specifically treat for these underlying immune issues. He has gone so far as to give me his cell phone number, send a follow-up email, the works. I am ultra sensitive to feeling like I'm being sold something, and I really have zero buy-in to that approach. I kind of feel like a guy just sent me a drink from across the bar, and now I'm half obligated to talk to him or something. I would like to think he really cares that much to help someone for nothing, but I know better.
Plus, I was already annoyed that he was 15 minutes late to our Skype call, even if he was doing it pro bono (It was so early, I had to be his first patient of the day, so no excuse really). He also got a couple of the facts wrong concerning our previous timeline of treatment in his follow-up summary email. Most troubling is that he does not report his success rates through SART because he's a staunch opponent to the entire reporting system. He's created a reputation for himself by being somewhat "rogue" or what he'd probably call a "pioneer", but personally I feel like the non-reporting of success rates through SART is a total cop-out. I see no evidence of his own success reports in a format of his own choosing either on his own website.
I don't care how much you don't agree with the establishment. If your success rates are that great (80% as dictated by his nurse), you will find a way to shout them from the rooftops to every other doctor, government agency, and prospective patient out there! This is a major red flag to me. I have extremely high expectations with the medical care I choose, and so far he's falling short in the "this feels like a fit" department.
So, I will let him do this test because I'm curious and it's supposedly covered by my insurance anyways, but my bullshit detector is on standby, and it will go off loudly at a moment's notice!
I know there are quite a few women out there who have looked into RI, or those who've at least done research on it and are curious. What did you learn? What are your hesitations? Any feedback on Dr. Sher or other RI's specifically? Would love to hear your thoughts!
