I love the Internet. I mean, the Internet provided my first job (building web sites), my husband (worked with me) and many of my bestest friends (also at that job) and let’s not forget about all the porn (kidding). I cannot even begin to imagine what this experience would have been like without the Internet. I wouldn’t have found out that Astroglide kills sperm.* I wouldn’t have anywhere near the level of understanding that I do about ANA and MTHFR. Most importantly, I wouldn’t have this unbelievable community. Every day my blog roll grows as I get hooked on the soap opera of someone else’s journey, and every day I get more visitors interested in mine, for which I am so grateful.
*I want to write this as many times as possible so that other searchers can find it. I can’t believe this isn’t a basic piece of info for people trying to conceive.
Today, someone found their way here through a search on ANA. Jen posted a couple of comments and then we exchanged a bunch of emails. The gist of it is this: based on her experience and extensive research in dealing with immune problems herself, she believes that I should have more testing to evaluate my immune system and any potential impact on my ability to have a healthy pregnancy. Before I go on, let me just say that I am grateful to Jen for taking an interest, for taking the time, for trying to help. Truly. Thank you, Jen.
But here’s the thing. There is so much information out there. So much of it conflicts. Not just online, but in the doctor’s office. I mean, Dr. Unavailable says ANA *might* cause clotting problems and offers Heparin as a treatment option, or at least baby aspirin. But Dr. Ivy League Immune Expert says these very same treatments could increase the risk of miscarriage in my situation. (How I wish I had written down his explanation of this!) According to Dr. ILIE, there is no reason to believe that the miscarriage was based on anything other than chromosomal abnormalities– basically, the reason "normal" people have miscarriages.
Now because my other immune tests for APA, anticardiolipins and lupus anticoagulants all came back negative, I made a decision to believe in Dr. ILIE, because this aligned pretty well with the research I had done and the research I made my friend, the medical resident do for me. And, while I have some lingering doubts and fears, I’ve sort of closed that chapter emotionally as I prepared to start over, as I got ready for Round 2.
This exchange with Jen has re-opened the book. (I’m really mixing metaphors here, sorry.) I’m now sitting here wondering, do I start doing more research? Do I call one of what she says are only 6 real experts on this topic (who do not seem to be in the NYC area, where I live) and ask for more blood tests? Do I wait to try to conceive again? If I don’t, and I am lucky enough to get pregnant again and then I lose my next one, will I torture myself with the knowledge that I did not do everything I could have?
For those of you who have been dealing with infertility and recurrent miscarriage, how do you handle all of the conflicting information? How do you decide who and what to believe? How do you deal with the pressure of having to make these important, these crucial decisions all by yourself? I’m in turmoil here. I just don’t know what to do.
I second-guess and my husband doesn’t like it. His philosophy is to do research, select a doctor, question that doctor, and then go with the plan. I’m trying to follow this method just because it seems fairly sane. Once I start second-guessing, I drive myself crazy.
You and I have already discussed topics on these lines. One article says baby aspirin is the best, the next says no. Taking Prometrium could harm child, then maybe not, but who the hell knows. I consider myself to be someone that has a hard time “relaxing”. So if it is of any help, I would say sometimes knowing TOO much about something . . . . just makes it more stressful. Read what you want, but at some point, “let it be”. Sounds cheesy, and it is certainly advice I myself have a hard time taking, but I am trying it for a change.
Welcome to the world of medicine. In all specialties, there are disputes and controversies over many aspects of a disease or condition, and not just in the area of treatment. Add to that a subspecialty that is as technologically fast advancing as infertility, and it’s one major experts’ disputorama.
I also had to look into the immunological thing, due to my 7 miscarriages, against the backdrop of other IFers on support boards who felt the need to choose camps and become vicious spokeswomen for each. Good grief! I’ve heard brilliant doctors called quackaroos because they dared to put forward a new idea, and on the other hand I’ve seen women try one outrageous treatment after another because they decided to put all their trust in one doctor and never question him. The balance is very difficult to find, to put it mildly.
Here is how I dealt with it–I read, and read, and read. I learned to be suspicious of RE’s who were too quick to dismiss new ideas, or who felt the need to disparage any doctor who was daring to think outside the box. On the other hand, if an RE gave me a thoughtful, reasoned explanation of why Dr. Maverick’s theories were a bit “off,” then I appreciated that, and adjusted course if necessary. This took quite a bit of energy, but I don’t regret it. I also threw into the mix some alternative medicine doctors and their theories. I gave up the notion that I was ever going to get the one right answer, BECAUSE IT DOES NOT EXIST, at least not yet. We are in an exciting time in medicine with regard to infertility, and there are new discoveries and connections being made every day. It only makes sense that one guy’s theory about immunology might be off or incomplete, but . . . his research may lead another guy to the right theory, or to the missing piece that makes it all worthwhile. Who was more important in bringing the truth to light? They both were important. So beware of petty, small, professionally jealous RE’s who feel the need to scoff at people like Dr. Beer or Dr. Sher or Dr. Check or even Dr. Toth. Every major discovery was once laughed at by those of average ability.
One thing that is helpful as you try to find the medical truth for yourself is DATA. I am still angry at Dr. Evil (you can read about the nasty bastard on my blog) for refusing to send my fourth miscarriage products of conception for genetic testing. He arrogantly dismissted the request with a wave of the hand, “Oh we know it’s chromosomal.” Do we? What if either my husband or I had a genetic problem? (He never bothered to order karyotyping on us–I had to ask for it). A genetic problem in a parent is different from a random chromosomal problem in an embryo. I was left to wonder at that point whether it was truly an egg issue or an immunological issue or a genetic issue and while all can co-exist simultaneously, it would have made a huge difference in how I proceeded if the embie had come back normal vs. abnormal. See? But I was denied that data. So try to get data whenever and wherever you can.
Here is another example for whatever it is worth: Dr. Beer (reproductive immunologist, not an RE) has amassed an impressive amount of research and information on the topic. Drs. Sher, Zouves and Check all utilize his work to some extent in their own practice. He is into very heavy drug treatment to suppress NK cells (one cause of miscarriage) and doesn’t believe that natural alternatives can help. But, in Germany, studies have shown that certain enzymes can help keep NK cells in check, and also that fish oil can do the same, and that is has an impact on pregnancy outcome. To take it further, I had a cyberbuddy point out that her naturopath asked, “why are we treating NK cells at all? Why are we not asking why they are overactivated to begin with?” She put her on an anti-allergy, anti-inflammatory diet, and within 2 months, her NK cells had returned completely to normal after having been elevated a long time.
So I think that ALL these doctors are onto something, but a lot more has yet to be discovered. Unfortunately, you are in a position of needing the information at a time when it is not yet available.
Another thing you could do–when you become pregnant again, you could have the ANA and other clotting tests repeated at that time. Some women test normal when they are not pregnant, but convert to abnormal when they are. You might also find a perinatologist and get dialed in with him immediately. I actually did that with my last pregnancy and was sooooo glad I did. I’m sorry, but I just don’t actually have as much faith in RE’s to manage all aspects of early pregnancy. Perinatologists are aware of all the evil hobgoblins of pregnancy that are out there and they also have the best information, based on experience, of what is dangerous and what is safe. I had a pre-conception consultation with a peri and was glad I did.
Sorry this got to be so long.
One more thing, I see that you did genetic testing and it came back normal female, which is confounding for the obvious reasons. Now, what many people do not realize is that whenever you have a D&C, the products of conception are sent to pathology. You will have to find out if they sent any of your POC to pathology or if they sent it all to genetics. When I had my last two miscarriages/D&C’s, I requested that pathology prepare the sample with both tests in mind, and send a bit over to genetics. I believe this is standard practice, but you will need to call and find out.
Pathology prepares something called paraffin wax specimens of all POC’s they receive. A pathologist can look at the embryonic tissue suspended in the wax slides and detect histological signs of clotting or tissue death due to clotting. They can also, in some cases, see evidence of NK cell attack. They can tell if there was vasoconstriction in the maternal fetal vasculature. They can tell if the embryonic tissue has features that are consistent with aneuploidy, though of course, they cannot confirm that, since they aren’t doing genetic testing per se. There is so much that can be learned from the tissue, even in a tiny embryo of an early pregnancy.
Dr. Beer will charge an exorbitant amount to examine a single slide, which is when my love affair with Dr. Beer went sour. I still maintain that he is a brilliant man with good ideas, but wrote him off after that in terms of treatment. Instead, I sent my slides (4 pregnancies with multiple slides each at that time) to Dr. Carolyn Salafia, and she reviewed ALL of them for something ridiculous like $200, which included a telephone consultation and a written report. I think she is simply outstanding. Even though I had not been able to test my earlier miscarriages for genetic problems, she was able to tell me that the tissue appearance was consistent with the tissue appearance of aneuploidic embryos, so I could make an educated guess that they were chromosomally abnormal. She was also able to tell me that my earlier pregnancies showed good blood flow to the embryo, while my later pregnancies showed constriction. On that “tip” I asked for a doppler blood flow study (something Dr. Evil and others didn’t think I needed) and lo and behold, the radiologist found that I did have poor blood flow, probably attributable to advancing maternal age, and something that acupuncture for two months fixed lickity split, as evidenced by a repeat doppler study flow and a radiologist who marvelled “I don’t know why it (acupuncture) works; I only know that it does.”
So Jen is right, don’t wait until you lose another pregnancy to investigate further. Doctors are fond of looking self-assured and in control (especially the ivy leaguers), like they are the master of the situation who aren’t going to get startled by every rustle in the bushes. But you don’t want to put yourself through this again, so just go get some more data. Good luck and I hope I haven’t confused you.
I agree with Suz. Do your homework, ask questions, go with your intuition. Eventually, you have to take a leap of faith.